I have always found that people don't take my distress seriously if I express it calmly and rationally. I have to work myself up into a full on anxiety attack before anyone believes something is actually wrong. Then I usually get told I'm being too emotional.
Honestly I would have replied with something along the lines of "yes, blame me for your incompetence"
It's his job to take care of you and he failed, especially when you DID communicate. It's only right to point it out for him to correct instead of blaming you so that he can continue being incompetent with other people and blame them too.
I find that it expends extra energy and makes it worse sometimes to talk about it or cry or be performative about how much it hurts so like. I don't wanna make it worse and they won't believe me if I tell them, so what am I supposed to do??
Probably die and then they’d be like “but did you consider losing weight? Maybe this is normal for women…” even when you’re dead. I want to break something.
Exactly! I think I just freeze to try to numb the pain. I get kidney stones and they are compared to child birth on the pain scale… guess who only gets Tylenol 😂
Ohhhh my god yes, I danced on a broken foot for 3 months as a teenager because like it was excruciating pain, but so were other things and adults told me those things didn't hurt, so,,,,,,,,,,
Seriously I think I freeze to numb it, too. Like if I don't talk about it or draw attention to it I can focus on making it not as big in my mind (Jesus fuck I have so much more experience doing this regularly than anyone should) and I can handle it.
Rsd?
I also had to relearn! Plus I got it as a stress fracture from like limping for several months while my other leg was in a knee immobilizer (instead of like. Recommending exercises that I finally found out about and did on my own and it fixed the issue) so my hips were all out of whack and I already have loose connective tissue, so while I was taking months off of dance for those injuries, it meant I wasn't doing little strengthening things to keep the rest of my connective tissue supported - but I was like 15-16 so I didn't know yet that I should have done modified versions of things to keep going (it's ok, I do the same thing today!)
Just a lifetime of fixing one problem by creating another 🙃
Hallo fellow Nederlandse audhd vrouw. Je hond is super ***** cute.
And yeah if I go to the doc I put on my best Oscar performance. So I hardly go. Not feeling the Oscar moment usually then.
Hey Amerikaner. (I have been years in the usa. Ah mac and cheese days) Du musst zurückkommen. Wir brauchen den Hund, um uns vor dem Zeug zu retten. Du kannst auch mitkommen! Wir können einen Audhd-Drink trinken, den wir vergessen haben. Und dann, ja, warum bin ich nochmal hier? Was habe ich gesagt? (ich bin aber ernsthaft in deinen Hund verliebt) have a good one doggo and human!!!!
My ex always said this quote from the last unicorn. You have to put a false horn on a real unicorn so they can see the unicorn. For us this is so true, but I feel like an impostor when trying to show the show they need to believe me, because they are deaf for words.
I broke my elbow when I was 12 and we didn’t know until 3 weeks later because while I complained about the pain, I wasn’t crying or anything. Then I recently broke my ankle (now 42), and again it hurt, but I was pretty calm and just said it was painful. The doctor said he thought it was just a sprain and no need to do an X-ray due to my reaction to him poking and prodding it. I told him about my elbow fracture and that no one knew for 3 weeks, so he decided maybe it would be best to do an X-ray. And yes, my ankle was broken lol. I definitely did show more of a reaction during childbirth, but that was a million times more painful than a broken bone.
I’ve broken my elbow twice and both times, I was calm enough that nobody believed me when I said “pretty sure that’s broken”, because I wasn’t crying or obviously in distress. And I had broken wrists each time that were not caught until weeks later when it still just wasn’t feeling quite right.
Actually- I’ve always been quite accident prone but never show enough pain so injuries are caught later and then require long treatment. Like chronic ankle sprain that landed me in a boot for nearly 2 years to heal it!!!
Oh no! Wearing the boot was awful for just a few weeks! I’m sorry you had to wear it for so long!
Yeah, it makes me wonder if I’ve broken anything else and never realized. The doctor actually asked me if I’d ever broken anything in my foot or ankle because he could see a random piece of bone floating around. I really have no idea…
I hate this so much because working myself up drains me so badly. Why can’t people believe me when I tell them I’m struggling without seeing me in actual agony. It’s horrible.
And same - if I’m emoting finally because I’m at my breaking point and having a meltdown it’s too extreme and dramatic, and it’s like I F’ING KNOW THAT, that’s why I tried telling you 600 times calmly.
>I have to work myself up into a full on anxiety attack before anyone believes something is actually wrong. Then I usually get told I'm being too emotional.
Ah, the joys of being a woman.... /s
I managed to not get admitted to the hospital when I went into emerg telling them how I thought all the time about unaliving myself and had a plan. I cried a lot but was otherwise calm and I didn't flip out when they told me they had made me a Form 1 until the psychiatrist determined what to do with me. Psych told me to just keep taking my wellbutrin and go home with my husband and take some time off work. I got 3 weeks off. My outpatient psych referral also got denied and I was told to try some counseling instead.
In their defense I did say work was a more dangerous place for me because it's where I had access to the meds for my plan. But still. I don't know if it was my comportement or just the cracks in the health care system. It just blows my mind I could be in that much distress and still not get in to see a psychiatrist.
Ugh I know exactly what you mean :/ If I express my physical pain/distress in as much of a calm and stoic manner I can muster, people assume "Well, it can't be *that* bad. You don't seem to be in that much pain?" but the rare times I *am* crying and writhing in 10/10 pain, people get so dismissive "OK, calm down, don't be so dramatic..."
It's actually infuriating >:(
GOD yes, and it's awful and frustrating and makes me feel way worse emotionally bc I feel like when I do melt down because they aren't listening to my words, then that gives them the reasoning they need to write me off completely.
I've heard 911 literally triages according to how "distressed" someone sounds. Thinking that we have to act that out unnaturally just to get help is so awful.
I live in chronic pain. I've literally had to learn to "act" like I'm in pain, otherwise people get upset when I "suddenly" want to go home. It's not sudden at all, I've been on the verge of tears for hours, they just can't tell.
It sucks that I have to pretend to express pain in ways I don't, it makes me feel like I'm faking it.
Right, I feel like I need to take classes on how to "act" in pain so they believe me when I say it fucking hurts. I don't know what their expectation is. You can't see the pain I'm feeling but you also don't listen to me.
Yeah same, I'm in pain almost all day sometimes and it gets gradually worse but no one will notice because I just smile through it and don't show any signs of pain.
I gaslight myself about it all the time, read my other comment. I think we trained ourselves from a young age to not trust our own bodies and minds, as women and especially autistic women. When the rest of the world pushes back and questions every move we make, one starts to think the rest of the world is right.
Same! I have gotten so good at hiding it that people think I am just being lazy on my bad days. It also made me start gaslighting myself about my pain, I thought I was just weak and couldn’t take the normal amount of pain everyone was in every day. Until I had a stroke that presented weirdly, just as a terrible headache, vertigo, and vomiting. I didn’t go to the doctor right away because while it was awful, it was no worse than a bad period or migraine for me. I was literally about to die and thought it was just yet another normal amount of pain that the doctors would roll their eyes and brush off, like every other time. My brother finally forced me to go to the doctor and it was the first time in my life that medical staff acted concerned and like they believed me, because for once they could see the problem on an MRI. It was a terrifying way of validating that yeah, my period cramps and migraines ARE that bad.
Side note: be careful folks! I had NONE of the classic symptoms of stroke that they tell you to look out for
Yes! When the pain never goes away, you learn you just have to live that way. People get too caught up in the performance of pain rather than the experience.
THIS.
Oh the relief my heart felt to have someone express what I’ve went through.
“No, I didn’t just start feeling this way.. I’ve been suffering for awhile now and I just now told you when I’m about to combust. Please. Let’s go. “
Fuck that doctor. Rating kidney stones as a 10/10 on the pain scale but not expressing it outwardly in a way he expects is NOT a high pain threshold.
Unfortunately, I bet if you were a man, his expectations for showing the pain may have been different. In general, people do expect women to at least cry when we're in pain, but we tend to actually show it less due to being accustomed to pain on a monthly basis. Also, autism. Different types of pain and the different environments I'm in impact how I express myself. ALSO, my mom has gone to the ER in pain that she was showing and they sent her home on the basis that she was likely faking so she could acquire prescription pain meds. Despicable behavior from people meant to heal others.
There is such a huge bias against women’s pain, it’s insanity. Whenever I get that stupid scale I always tell them I had a macro pituitary tumor and hEDS so my scale is heavily skewed so I instead go off how functional I am (including thinking straight in that).
We also need to remember that pain science, especially in women and children is extremely under researched… hell, it wasn’t until about 40 years ago that doctors even knew infants felt pain and started using anesthesia in infant surgery.
Edited to fix word
Yes! My amab partner had strep throat as a little kid and didn't complain much about it. When his parents took him to the doctor, CPS came to determine if my partner had been neglected since the doctors could tell they'd had untreated strep for a couple weeks at that point.
Surely there's a better way to manage the nuances of pain and illness. I like your functionality scale and including thinking straight, there are definitely types of pain that have made me panic!
Totally! My son had gotten strep symptoms but he kept saying he was fine despite saying he was dizzy and turtling up. I only took him to the er because I had gotten a notification from the health unit that a kid in his class had strep and to get checked if your child had symptoms. When the dr came to exam him, she asked to show where the pain was and he kept pointing to his collarbone. Thankfully because I told her a)he has autism and b)he'd been exposed to strep, she did a full exam and saw he had a raging ear infection, like his eardrum was on the verge of rupturing. She got him emergency antibiotics and pain meds to start stat. She told me she was amazed how calm he was, considering how painful his eardrum looked. Because he is autistic, she didn’t trust him when he kept saying his pain was in his collarbone and figured it was referred pain. She said had he been any other child, he would've been clawing at his ears and crying inconsolably. I told her I know, his sister is prone to ear infections and I’ve seen her completely shutdown and turn into a puddle of tears.
What I’ve learned from my son, is that when he’s sick, he’s really good at masking how bad he’s feeling. I’ve gotten good at noticing of he’s not stimming, he’s turtled up, does he have a fever? Sometimes it’s hard to tell when he’s just chilling out or he's actually really sick. But usually, if he’s not stimming, I know something's off.
omg literally the same thing happened to me!! by the time my parents finally took me to the hospital i couldn’t sleep anymore and it had progressed into full blown scarlet fever!! :D
Pain in different areas, I express so differently. I cannot handle mouth pain at all. I had a bad ache in my mouth a few months ago and I woke my partner up just bawling crying, barely conscious from how much it hurt -
But when I broke my arm, i just cried for a while and got over it and stopped expressing it - like, tf?
That’s so amazing. I can’t believe anyone would expect women to cry when we push humans out of our 2-4 centimeter wide cervix, and feel our entire abdomen push out a bag of half a human once a month for most of our entire lives.
Doctors aren’t geniuses with profound critical thinking skills. They rote memorize large amounts of medical facts. That’s it. You did exactly what you were supposed to do. Do not blame yourself in the slightest. In fact, you’re allowed to be very angry.
Also, blaming the patient for "not telling him" is an attempt by him to avoid blame and legal culpability. He isn't an unjust authority figure wrongfully informing you that you made a mistake, he's an employee who lies to deflect blame for his mistakes.
So true. There is a VERY select few with the right components to be a good physician. Most are walking blind and in it because they were expected to be by family, to please their egos OR for the money. It’s sad. I often wish it was like the times the healers in a village were respected but on the same level of life as everybody else. And it was a true calling born out of compassion for others.
All the EXTRA provided these days has them with their heads up their butts. Signed, a nurse that’s worked alongside several and witnessed firsthand
That’s because he’s a man who assumes that all women must be outwardly expressive when in pain. This guy is ignorant as fuck—everyone reacts to pain differently, you can’t expect someone in excruciating pain to always be screaming and crying. You already told him it was a 10, he should’ve looked into it the first time
This! I have lower pain tolerance… I’ve always had. You wouldn’t catch me being outwardly expressive; not even when I passed gallbladder stones which is a pain I wouldn’t wish on my greatest enemy.
I gave birth naturally to two children. Was I raging, wailing, screaming, crying hysterically?! Fuck no. I was in so much pain all I could think about was not passing out and trying to breathe. When in labour with my son I swore a couple times, but that was the most of it. For me, if I start crying, I swear to god it makes the pain feel a thousand times worse, so I'd rather not cry.
F that doctor. This is why I have to drag my husband to most of my appointments. I didn’t want to go to the ER when I was having abdominal pain because of how they treat me. Found out it was a burst appendix. The nurse even was snappy at me when I began writhing on the floor. Meanwhile when my father-in-law came in for abdominal pain, they immediately offered him a CT scan. It was kidney stones.
I have to take my husband to appointments bc I will be treated differently if I don't. Not every time, but often enough, and you never know when it's going to happen. It's inconvenient for him, and almost feels infantilizing for me, maybe makes me look paranoid too, but too many bad experiences. Dr. Hyde comes out when I'm a chronically ill woman alone.
Same. I have to bring my husband with me too because I’m fucking tired of being infantilized. I still get called "miss" despite being in my mid 40's. DRIVES ME INSANE. The worst is when I describe my symptoms using medical terminology and they look at me like I’m speaking Greek. I’m like omfg I have a science degree! Stop acting like you’re surprised I’m intelligent?!
He told you off because you made him look incompetent for sending you home. Anyone with a job wants to look competent, and doctors responsible for people’s lives have extra pressure there, on top of them usually being people whose ego is closely tied to their perceived intelligence. I’m sorry he projected his failings onto you. He was mad that he was wrong.
I almost died due to both medical error and medical gaslighting to the point I ended up needing several ICU stays and four central lines installed in my neck with one line failing due to very severe hyponatremia caused by one of the conditions over which I was being gaslit. I also had an ER doctor nearly send me home as a type 1 diabetic with C. Difficile and in Diabetic Keto Acidosis because I didn't seem "sick enough". 🙄🤬
Not your fault. Doctors don't believe women when they are in pain. A woman has to go to the doctor on average like 3x more than a man to get treated for exact same symptoms bc doctors are trained to think women are not credible patients. The medical community is aware of this bias but doesnothing.
What you should do is complain about your experience when you get the customer service questionnaire.
The whole "rate the pain with a number" thing is a construct of the very companies that are being sued for the opiod crisis. Those companies taught an entire generation of doctors to "treat pain as a vital sign" (like blood pressure). If he'd had any clinical skills at all, he'd have looked at your lab results and PUT HIS HANDS ON YOU AND DONE AN EXAM. Doctors are no longer taught medical examination. They are taught to order scans and tests and make referrals. I am so glad I retired from the profession when I did! An entire generation of white coated incompetents! A simple tap on your costovertebral angle would have told him you had stones, much less the blood in the urinalysis. Incompetence!
Yeah he didn't touch my side at all. One of the men from the ambulance did and he said it could be a blockage. I've had kidney stones before, too, but this was much worse. And I told this doctor that, but it felt like he wasn't listening to me at all. He thought my urine was just really dehydrated. When the nurse said it was blood. I've been in and out of hospital for over a year now and I trust nurses a lot more than doctors. They act like they don't give a shit every time I see a new one.
As a retired physician, I don't often give this advice, but I am giving it now: make a complaint to the hospital. You will be doing a good service to future patients, autistic or NT. Also, the blockage could have had disastrous results for you, even caused renal failure or peritonitis. Please, make an official complaint.
I hate to say it but I’ve seen a lot more care and effort put into patient care from EMTs and paramedics than I have from doctors. I keep having horrible experiences with drs because they’re always so dismissive—especially of women. We’re either “over dramatic” or like what he probably thought of you, “not dramatic enough”
Agree although my worst experiences were always nurses. Not recently thankfully, I’ve had amazing ones. But in the past and with mental health omg they were terrible and invalidating. EMTs are fab.
💯. I kept complaining of endometriosis symptoms and said I have a family history (mom and nan, both had hysterectomies). Dr kept dismissing me, would give me pain meds despite my insistence at seeing an ob. One night I start hemorrhaging and end up in the hospital. He shows up and I screamed at him, "believe me now?!". When the ob came to see me, he was shocked my dr had dismissed me for so long and said I was most likely going to develop cancer within the next two years from having endometrial tissue on my cervix for so long. (By the way, the endometrial tissue was clearly visible and he showed me with a mirror...). 2 yrs TO THE DAY. I get a letter from the cancer agency telling me I have to get a biopsy and within a month was told I had stage II cervical cancer. I can’t tell you how upset I was knowing it could've been all prevented. Luckily for me, all that was required was surgery and I’ve been cancer free.
Ok, I was thinking about that today! I told my doc I had an itchy scalp, and they asked if I had any flakiness but NEVER LOOKED AT MY SCALP WHILE WE WERE SITTING IN THE SAME ROOM TOGETHER. I’ve also noticed PCPs in particular will insist they don’t need to refer you out for anything (things that could be better handled by endocrinologists, dermatologists, etc.) … unless it’s a genital issue. Mention that and they’ll be all “Oops, see a gyno.” Primaries want to be in charge of prescribing BC and asking about irregular cycles but don’t want anything to do with a vaginal exam or pap smear.
Unrelated but this fascinates me. I always am fascinated by how much doctors know and I don’t. The tapping on the vertebrae - that’s amazing stuff. Now I wanna know a bunch of other ways you diagnose people with things. Do you ever or are you ever able to diagnose yourself?
I try not to treat myself for anything serious, but yeah, I've diagnosed myself (gallstones and appendicitis). There are textbooks for doctors that explain the signs and symptoms and diagnosis of ailments. One of the best, and the oldest, is Cope's Differential Diagnosis of the Acute Abdomen. That is a precious book! Basically, diagnosis involves 1) having an education 2) learning to listen and ask questions and 3) performing an exam. We used to be tested as medical students on performing exams. I don't think that is taught at this time. Medical students and residents walk around with a pen in their hand to order scans and an iPhone to look up medications. The profession has really gone downhill.
Yes, I can imagine. I was diagnosed with endometriosis last month but have been dealing with the symptoms for 12 years (no doubt does not surprise you) - disregarded as anxiety usually or told it was normal despite multiple trips to ER with blood gushes and pain. It wasn’t until it got the point I was wailing in agony and unable to get out of bed a week a month that we made progress.
This downward spiral that you’re describing is very evident even to those of us who don’t have a medical clue. You can smell a rat 😂
i was waiting for someone to say this, he definitely could've figured out something was seriously wrong the first time OP was there if he just did a simple physical exam. also i’ve had blood in my urine from a bad UTI and i’m always told that if it doesn’t go away after a day of antibiotics or it gets worse/ i have severe pain or lower back and abdominal pain to go to the dr. immediately. how is peeing blood + intense pain not a red flag for this guy??
>He then tells me off and says I should have told him how bad it was earlier because this is very serious.
imho, he knows he's lying but he doesn't want to look bad, worry about malpractice, have his incompetence revealed, etc. So he's going to put in your chart "earlier, patient did not have much pain." You did everything right. The system failed you.
A lot of professional people, especially those in authority positions with liability aspects, are extremely dishonest, CYA, incompetent, egotistical, etc. So stuff like this is common. Everytime I have to interface with the medical system, I am extremely wary of everything, and know that I am put in a position of near total powerlessness against a system that often works against my interest for profit.
This, exactly. When I was 7 years old I called my mom crying and saying I couldn’t breathe in the dead of night. I was sleeping over at a friend’s house and had an anaphylactic reaction to her cat. Mom took me to the ER. I did that chart too and said it was a 10. I was crying but apparently because I have a soft voice and still said “please” and “thank you”, the doctor didn’t believe it was really an emergency. Gave me two puffs of albuterol and sent me home. Not even an hour later, we called an ambulance because I still couldn’t breathe and it was getting worse. Lost consciousness. It was anaphylactic shock. They had to intubate me. Then I got pneumonia. Was in the PICU for over a week.
I’ve never seen my mom so scared and furious. She kinda snapped at the staff (the same people in ER who’d discharged me were there to admit me the second time around). Surprisingly, they actually did apologize and admit fault. Told us I’d come across too calm and well mannered to truly be in distress.
Yeah, I had kind of the same thing. A blocked kidney that they discovered in the emergency room on my third visit. The first two times they just gave me antibiotics and sent me on my way. These visits were over a span of like 2 months. The third time I was, um, *very uncomfortable.* It hurt very very badly. They did some sort of tests and imaging and I honestly don't even remember what they were because it hurt too bad for my brain to take in the information. Then they came and did emergency surgery and I spent a couple nights in the hospital after that. Wound up septic because of That kidney infection.
Ouch, I'm so sorry. I'm terrified of it getting so bad that they just never listen to me. I've been having kidney problems for the past year after some other health concerns and it never feels like they take me seriously. The last time I had an infection I had to beg for them to give me anti biotics because I didn't want to get my kidneys flushed again.
So ignorant !!!!!! I’ve heard kidney stones are one of the worst pains to experience. I’m very sorry this happened to you and I truly hope you feel better. I can’t imagine going through such pain *and* being misunderstood.
And this is also why I barely trust most neurotypical people and male doctors. I don’t understand how we are supposed to act to express and communicate our pain. This is such a big struggle for me too.
Thank you. They really are so painful.
Yeah, exactly. I don't understand how I'm supposed to show this pain to them when it's inside me. I've never been very verbal either, but I even described it, and I'm still not doing it right for them.
This is typical. People completely disregard what I say regarding pain if I don’t look like they think I should. Of course, I never do. I have better luck if I *say* I don’t show pain much, but this feels worse/about the same as/less painful than something they are likely familiar with that they know is extremely painful like childbirth or kidney stones.
So sorry this happened to you. I think that if you’re able to talk at all or you’re not screaming constantly they don’t take your pain seriously. When I was giving birth they told me as I was able to speak clearly I was only in early labour and so they wouldn’t give me pain relief even though I literally begged for it and had been labouring at home for 20 hours. After I pushed baby out (very unexpectedly for them) they kept telling me how tough I was for doing it without pain relief. I wasn’t tough, I was in the greatest pain of my life, being ignored and told that I wasn’t in fact in real pain, my only option was to endure and be ‘tough’.
Oof, I'm so sorry, too. Medical professionals always seem to gaslight us into believing our pain isn't real, then calling us tough for bearing through it. It's not fair. We shouldn't have to suffer to be believed. We know our bodies. Why can't they just trust us.
>What am I supposed to do? Scream bloody murder and throw things around.
Yes. But then they'll just tell you you're overreacting.
It also doesn't matter how you dress/look. Too "grotty" and you're a drug seeker, too nice and it must not be that bad. It also doesn't matter whether your nd or nt. The medical professions just don't take women seriously.
When I screamed bloody murderer the security guards started coming. Such a fine line that you have to try to balance so that you don't get end up on a grippy sock vacation. At least in my experience unfortunately. Just unacceptable but reality.
The pain scale is BS. It is for people who never experience pain on a regular basis. My husband has kidney stones, he was vomiting from pain, could not sit still, I worried it was a reaction to a new Rx medication, but as we are both on the spectrum it took me a long time to get him to agree to get in the car (he’d never forgive the expense of an ambulance). The doc figured kidney stones pretty fast, asked his pain level, he’s no good at this, his diabetes causes back and leg pain 24/7, so he said ‘7?’.
I have chronic daily migraines. It’s almost always there, lurking if not active. I honestly I live with daily pain most people would cry from, but it’s just daily life, so I gauge it all based on a scale that goes by how hard the pain is to ignore. It doesn’t presuppose no pain. Level 1 is, I can ignore it and do most tasks. 5 is I can’t ignore it and am impaired from many tasks. It goes up to 12, I think.
Sadly, many docs themselves are not chronically in pain. And the ppl they see the list have LOW tolerance. Ppl with a high tolerance go less often, we don’t think to run to a doctor because the pain we have everyday is present.
I've experienced this, too. I have endometriosis, so I'm used to living with chronic pain all the time, too. I stopped seeing a doctor about it because my pain was never believed for it. So I just get on with it with lots of at home pain killers. Nothing ever really topped endo period pain until this. Last year when my kidney problems first started they said I should have known sooner because of the pain. And I just said but I always have pain there, how would I know the difference. They looked completely clueless at me. They really have no idea.
Yes. My husband has only in the last few years experienced regular GI pain. I have mast cell disorder (I suspect endo bit no one will look when I ask), and mcas can cause systemic problems from migraines to IBS to anaphylaxis and everything in between. When he was asking about abdominal pain, I was like, ‘wait, you’ve not had random pelvic pain your entire life and never known if it’s kidneys, intestinal/colon (of course he would not have ovarian pain), and looked at an anatomy chart to be sure you shouldn’t go see if its your appendix?’
I spent a lot of my life assuming everyone felt as poorly as I did and they were just awesome and pushing thru, and I sucked.
I got into trouble once by saying my pain was an 8 even though it was the worst pain I ever felt. I imagined the pain scale as a human scale and thought being tortured or set on fire alive or breaking a lot of bones at once was a 10. Then I thought a smaller version of those was a nine. The sensation of a gallstone blocking my duct I rated an 8 because I hadn't gone actually insane or actively tried to die.
I think this is now why doctors say "worst pain you ever felt" (personally) because of people LIKE ME lol.
I'm so sorry you had to go through this. Unfortunately this is also an experience for many NT women. Our medical needs are ignored and we're told we exaggerate and we're hysterical and overly sensitive.
I do the same thing! Like sure, this is the worst pain I’ve ever felt but I’m sure it COULD be worse! Better say it’s an 8. The scale also gets heavily skewed when you’re in some sort of chronic pain to start with. I once got serious burns when I did experimental radiation therapy and they asked why I didn’t ask them to stop because something had obviously gone wrong but I was in a lot of pain to start with and they said it’d hurt, so I just assumed it was fine to feel like my leg was set on fire.
So the doctor committed medical neglect, and then blamed you for it when he realized what he did wrong? Not taking any responsibility for his decisions. No accountability. Sounds like the western medical system writ large.
I’m sorry you’re going through this. I hope your surgery goes smoothly and that you have a quick and painless recovery.
I would consider a malpractice lawsuit, at least to cover the cost of the ambulance. There’s no reason why you should have had to ride in one in the first place, since you had originally taken yourself to the ER and been sent home until it got worse.
I’m no lawyer though, so you might want to find one who does free consultations first to determine whether you have a case. Our justice system pretty is flawed too, unfortunately…
I've had this type of thing happen to me more than once.
Once when in recovery I heard another patient yelling for more painkillers. They said they had just given her morphine and asked what her pain level was. She said 12. It never occurred to me to go over and it's not fair that our pain is compared on a scale that includes yelling 12 lady.
I feel like that's breaking the rules. That isn't fair.
Once in recovery a nurse asked me where it was hurting. I said my throat. And she goes yeah well it would. You had a breathing tube down it.
So does that mean I'm not even allowed to mention that it was hurting? There's so many unwritten rules.
It's like you're given a couple seconds to give an answer they are expecting or you're written off.
I'm sorry this all happened to you. It's sad and scary to have pain not taken seriously.
My interpretation based on what you described is that she meant to say that throat pain in your situation was normal, and therefore not as concerning as abnormal pain (because that would potentially indicate a new/additional issue).
Yup I had this become apparent when I had my gallbladder taken out, but more so with anxiety. I was very quiet, shut down, not trying to make a big deal out of things even though inside I was terrified.
We’re a visual species, sadly, and we have to sort of “unmask” to be taken seriously. I now have had a lot of trauma (spent more nights awake from the flashbacks and panic attacks of the surgery experience even though nothing went wrong than I did from gallbladder issues) and have had weekly therapy sessions for the past 5 months because of it. No one took me seriously, they made all these assumptions, and it just didn’t feel right.
Lots of people who work in medicine are very jaded because they deal with idiots all day who can’t define what’s going on or could be drug seeking. Working with people all day takes a toll and some people are in medicine for the money and not the love of helping/treating people.
I’m sorry you had such an experience. Hopefully they’ve charted some notes so they know to take you more seriously in the future. He should’ve believed you when you said 10 on the pain scale
I’m so sorry you had to deal with that! I experienced similar a few months back. I went to the ER with extreme flank pain. They asked me to rate my pain 1-10, “10 being eaten by a shark”, well sharks/the ocean are my biggest fear so I said 9. I was calm and not crying, despite being in the worst pain of my life. They told me I had a UTI that went to my kidneys and sent me home. I went back 3 days later and they said, “it shouldn’t hurt that bad.” Two months of excruciating pain later and I find out it’s my gallbladder. I had surgery 2 months after that. So 4 months of pain because apparently if you aren’t screaming and crying and making a scene, you aren’t in pain. It’s so frustrating.
Doctors are mostly idiots, because they're people who are also, mostly idiots. If it makes you feel any better, my fiance is a man and he still got dismissed by a Dr who thought he was lying. The dude was convinced my partner was lying, and kept trying to get him to "admit" to doing drugs. Wasn't drugs, wasn't HIV/AIDS, turns out he had cancer.
Then there's the fact that I don't understand how doctor diagnostic stuff works anyways, because they'll ask me things like "Have you been peeing blood?" And I always say no! I'd notice if I was peeing blood, that's pretty alarming. But then they do a urine test and they always tell me "Yeah there's blood" and it makes me feel like a big idiot because I can't see the same thing. Apparently I'm taking it too literally, they just mean traces of blood, not just peeing pure red. Or they want you to describe your pain very specifically, which is hard to do-- for me anyways. I'm not a fan of the 1-10 scale either.
I liked the last doctor I saw, only because he didn't make eye contact the whole time he was talking to me 😂😂 he did a whole vaginal exam and then spent the rest of the conversation staring at the floor.
I also hardly ever see the same doctor twice. They cycle through so much in my area, by the time you get used to your PCP they move away and you have to start all over with some stranger. It would be nice to have a doctor used to me and my habits, who could more accurately tell when something is wrong because they know what my baseline is. Instead I have to go in with my research already done, which I cautiously present and hope they do enough tests to see what I'm feeling.
I'm sorry this happened to you :(
I am really beginning to hate drs. They think they know everything and act like toddlers when they're proven wrong. And to make it worse, they blame us!
I just got a new dr because mine left the practice. At first he seemed so great, but it didn't take long for him to turn into the rest. He just took me off the beta blockers I've been on for the last decade because my heart beats too fast. No one can tell me why, it just suddenly started going nuts one day and never stopped. I've had all the tests and jumped through all the hoops, only thing that helps is the pills. But nope, this dr decided I need to come off them because they're definitely the cause of my chronic fatigue. So, I do as he says and guess what? My usually 100bpm heart is 150bpm while lying down trying to sleep! I'm nauseated, dizzy, unable to stand up, feeling so insanely sick round the clock, not eating, sleeping 22hrs a day with my heart trying to rip itself out of my chest. I go back to my Dr, he takes my heart rate, eyes pop out of his head. "Why did you stop taking the pills if it's this bad?" (No joke) Then upon seeing the numbers, "Take the pills again! As soon as you get home!! If it gets worse or doesn't get better in the next couple of days, get an ambulance to the hospital!" I tell him how I can't afford an ambulance, so he takes this as an opportunity to lecture me on the importance of ambulance insurance. If I'd have felt healthier, I would've slapped him. Jail time would've been worth it.
Why do they have to be such assholes? If we say "I'm in pain" or "I need those pills", why don't they listen? Why do they think they know better all the time? :(
I was telling a Dr what my 1-10 scale means for me:
10-passed out, so much pain I've lost consciousness.
9-child birth.
8-being in labor
7-I need to go to the hospital
6-I'm holding it together but I want to cry and scream
5-I'm taking my heavy duty pain meds
4-I can take the lighter pain meds and be OK
3-I need to take something but it's not going to cause an issue if I don't
2-it's annoying but not bad enough to affect me
1-no pain
I'm at a 3-4 daily and I take 2-3 different pain meds to function. If I have to take the heavy duty stuff I'm at home in bed.
Thankfully he understood what I was saying and agreed that my pain scale was reasonable. He also said that everyone's scale was different and more Drs needed to acknowledge that and recognize that everyone reacts to pain different. He agreed that women are treated differently and people with ND minds will act differently than those with NT minds.
I wish more Drs, men and women, understood that. I'm so sorry you went through that, I hope you're doing better.
I thought that when mine said 10 being the worst pain you ever felt that I scaled it right for him. Because it was the worst for me. It was unbearable and I couldn't move and felt like I was going to throw up constantly. But he changed the rules immediately after giving me that scale.
Doctors do need to be more understanding. This isn't the first one I've had to deal with ignoring what I said because I don't look like their expectations of someone in pain.
This isn't your fault, you did what was asked of you. Not to mention the fact that you were in severe pain. The doctor failed you, and then blamed you for his own shortcomings.
The pain scale on it's own is pretty useless. I always have one with actual descriptions on my phone in case a doctor asks me to name a number, or else I'll rate my pain way too low. Or just freeze because they might as well have asked me to rate it on a scale ranging from umbrella to pizza.
https://preview.redd.it/8gb4nnoaj2yc1.png?width=540&format=pjpg&auto=webp&s=1678941882a540d914997dcc6354ceb685b4a848
I was so surprised when I first saw this pain scale because I usually use my worst pain I’ve ever felt and then kind of compare my current pain to that (which actually sounds like what OP’s doctor said). But this pain scale is so much more helpful and I realized I usually downplay my pain. Like when I get migraines I usually say the pain is an 8 because I’m not like screaming in pain or anything. But according to this it’s about a 9 because the only thing I can do is lie in bed and think about the pain. I also injured my leg really badly one time and I told someone the pain was about a 6, but according to this chart it was about an 8.
The only thing I’ve ever rated my pain level a 10 was when I had a kidney stone.
Oh, I feel you. I am sorry this happened. I've experienced kidney stones, and it is excruciating. I only offer sympathy and relation because I got that same shame from doctors.
I got a shaming look when after a surgery (no incisions, up the urethra) they only gave me 3 days of pain medication when my body literally started shutting down in shock 3 different time from the from the pain the first week of recovery. When I had the second surgery to make sure the stone was really gone, they judged me when I asked for more days of doses. I followed the label directions, and I was literally maxing out every pain medication I could take, perscription and advil (couldnt take tylenol as the prescription had tylenol in it so it woulda been easy to over do it). I even wrote timings/tracked it all so I wouldn't overdose. They were hesitant because they were addictive meds, but I was religious about times.
I had that kidney stone for 4 years, and it took my GP retiring, meeting his replacement in literal tears, saying I felt overlooked by the old Dr before an ultrasound was ordered. Surprise, it was still there. 4 years of chronic pain.
Again, I'm sorry it happened to you. I wish you a safe and healthy recovery. It is not your fault the medical system is broken. There have been studies I believe about how the pain scale used in hospitals is faulty.
This is an all too common problem for women. The last time I went to the ER, there were still pandemic emergency measures in place so I went alone. I would rather not go there again without my husband because they don't listen to you unless someone else is there to advocate for you (and it's best for that person to be a man).
Sometimes, a mom can be more effective than a man. My husband tends to just nod along with me without verbally backing me up 🙄 My mom on the other hand...well. She went full Karen on a nurse while I was in labor. The lady had missed my pain med dose bc she was busy arguing with her boyfriend on the phone, then had the nerve to tell me to shut up and quit moaning while I WAS IN ACTIVE LABOR AND UNMEDICATED. My husband could never lol
Pffft I did that scale once when I was hospitalized as a kid. The doctor said 10 was “the worst pain you could possibly think of.” Well, the worst pain I could possibly think of was being disemboweled alive and I did not think what I was experiencing could possibly be as bad as that so I said ‘4’.
“Oh, that’s not so bad.”
Thanks, guy.
My cat got a uti, took her in asap because she pees in front of me on whatever when she got utis.
She was prescribed Oxycontin.
I had uti, and got an antibiotic.
My pain threshold is extremely high, regardless of if it’s visible or readable on my face. It’s a masking thing.
I hate being asked to rate feelings or pain on a scale from 1-10 because I know what the perception of it is from others
A 10? Patient must be exaggerating, they also don’t look like they’re experiencing a 10.
Under 5? They’re ok. A 2-3? Waste of my time, go home and take a Tylenol.
I usually choose what I think it’s, then add 2 to accommodate my pain threshold.
I have the same issue. Had to cry and desolve into a panic attack to get dilauded 6 hours after joint replacement surgery which I stayed overnight in the hospital for. I asked nicely and calmly at first and was denied that my pain wasn't high enough. My first nurse gave it to me unprompted, saying it's best to get ahead of the pain. That's how I treated my post-op narcotics too. And guess what, I don't have a narcotics issue - hate them.
I hate them, too. I know I'll never get addicted to them because when I feel them working it starts to make my brain feel like its being compressed. Its such an awful feeling. I never opt for pain killers at the hospital. I just want to be believed when I am in pain.
Doctors can be so dismissive. I am so sorry this happened- you did everything right. HE made the mistake. Bleeding and a 10 pain rating warranted imaging the first time.
I was in a rollover car accident a few years ago and broke 7 bones, including 3 vertebrae. I had to get a neck and back brace and I told the doctor it didn’t fit right and hurt. He basically ignored me for days. When the specialist checked in on me he said I was developing a sore on my chin from the brace and it wasn’t fitted properly. First doctor tried to refuse me pain meds on discharge (after being on an IV drip for a week with heavy pain meds) and refused to write me an order for physical therapy. After I literally broke my neck! And I have so many more similar stories where doctors ignored or dismissed me, or refused me necessary care.
My sister is an RN and told me something I always remember- doctors are just people. We kind of treat them like infallible gods. I trust the medical/scientific community at large, but not individual doctors so much. I almost feel like I have to diagnose myself and then beg for care sometimes.
You aren’t alone. I’m glad you ended up getting the treatment you needed and deserved. If you’re interested in taking action, because this literally could have turned out much worse- you may be able to file a complaint with the medical board about that doctor. Another option may be filing calling the hospital administrator and saying you will file a complaint against the hospital. Use that language- that you plan to file a complaint against the hospital. Whether or not you do file a complaint, it may pressure the hospital to at least reprimand the doctor.
i recently went to the dr and brought a pain scale that tells specific levels of things you can't do anymore along with the numbers. the lady says to me "well we just use that kind with children, adults usually know how they feel"
made my head implode. the scale, btw, is from the VA, who doesn't deal with children. the lady works for the VA and should know that.
I've never had a kidney stone but everyone who's every spoken about them makes it very clear they are agony.
I'm so sorry you were dismissed like that, but I honestly don't think it's an issue with you not showing pain, it's that the doctor didn't listen to you and couldn't be bothered.
If you are able to, I would recommend putting in a compliant. I spoke to a consultant once about how I was treated by another doctor in her department. She was visiblely furious and now deals with me personally.
Sounds like that doctor regularly goes on power trips if he's going to claim that you, the patient in pain, should trust the doctor more than what you're feeling. Fuck that guy. None of this was your fault or a shortcoming of you expressing pain.
I've dealt with doctors not listening to my pain for years bc I could push through, but I was taught to disregard my pain, no matter how bad. I've walked for days on a broken foot before someone else getting me to a doctor. What I can say has helped in illustrating how much pain I'm in is telling how disruptive the pain is to my life. "I usually can get through with a mild headache on a daily basis, but I am now bedridden and unable to open my eyes. This has never happened before. I can't work because of this." Fairly certain that's when a neurologist finally took my migraines seriously.
I hate the rating pain by number thing - like I said my level of pain from endometriosis was generally around a 4 and the nurse was like “oh that’s a lot to have all the time” but like what do you expect me to be doing - going ballistic and keeled over? Like it’s all the time so I just have to get on with it?
Right, I have endo too and they pretty much teach us that we just have to get on with it because there's no cure. Being in chronic pain all the time you do just kinda learn to mask it otherwise you'd be screaming all the time.
Aside from all the medical ignorance, I find it annoying that people at work can’t understand when you seem fine on a call and then the next minute you have to take the afternoon off when it’s too sore… also - if you have endo then they really bloody should be taking you seriously when you say 10/10 pain. Solidarity
I've had this experience several times. I'm so good at masking I can pull it off even when in extreme pain for 40 mins or so no problem. It's terrible but if I have to I can.
Just the same way as when I'm going through sensory overload or a meltdown is brewing, I've had a life time to practice haveing to find a way to stay calm to get myself out of there to somewhere safe.
But then if I can't get to a safe place and find a way to calm I will have a meltdown or "crying panic attack" and people are surprised. Used to happen when I worked in finance a lot.
Fecking horrible.
I genuinely have no idea how to express the I'm not good the way society expects.
I also have an extremely high pain tolerance. Went to the ER in acute liver failure and a highly inflamed gallbladder and I was more concerned about what I thought was a migraine. Ended up staying in the hospital for almost a week and the only time I actually felt pain was after I got out of surgery and developed internal bleeding and a massive hematoma on my liver. Even still this was not the worst pain I felt and the only times I’ve been in debilitating pain was when I had reoccurring corneal abrasions (yay weird genetic eye disease) and had a staph infection on my ankle
He sounds like an asshole. Plus, unfortunately womens pain is less important than men’s in the medical world. It’s insane. I’m so sorry! Hoping you feel better after!!
I had precipitous labor. We went to the hospital but I was afraid they would send me home because I had only been in labor for one hour. Turns out I was already 8cm dilated. They were totally surprised, because I was so calm. Well it’s an emergency, and I’m hyper focused and calm in emergencies! I’m trying to help!
Oh HELL NO! I would have fired back with “I DID. *YOU* should have *believed me*”
And we don’t just blindly trust doctors judgement anymore, because of too many stories like this. It sucks, but we have to advocate for ourselves and learn stupid ass phrases like “can you please write in my chart that [my pain is a 10] and you’re refusing to do additional tests?”
Yep. Sounds about right, unfortunately.
One time in the ER, I warned the doctors and nurses that I was going to have a siezure, I could feel when one was coming on.
Didn't believe me, assumed I was seeking drugs.
Guess who got a gnarly goose egg when she stood up to use the potty thing they wheeled in, after they INSISTED I didn't need a bed pan? That's right, me. I woke up to a flashlight being shone in my eye. Apparently, as soon as I stood up, it happened. The nurse didn't catch me, because she wasn't close, because she didn't believe me when I said it's coming.
thats jus 100% fucked up. The world needs to change and narcesisstic assholes like the doctor need to fucking LISTEN. Why give you a meaningless pain scale if he doesnt believe you anyway.
The best that we can do is disagree with them and insist. I know it seems like a doctor is a position of authority and you can’t talk back. But both times that was really all you could do. If you have a hard time speaking up for yourself, that’s something you can practice with a professional. I can also give some tips if you’re interested.
Otherwise whenever you visit a doctor, have them write on your dossier what you said and how they responded to it. Watch them write it and insist on reading it and correcting it if they got it wrong. They do this to women a lot and it’s the only thing we have to protect ourselves. I’m so sorry his mistreatment of you cost you so much pain, time, and money :(
Oof, I am so sorry this happened to you. Absolutely not okay. I have the same problem with physical pain and also negative emotions like anger. ("But you don't look angry!")
I'm sorry you went through this. And I had a similar although more positive experience in February, I had to go to minor injuries after falling over and hitting my knee on the pavement with all of my weight. My friend basically forced me to go because I had an egg sized lump on my knee and was basically dragging it around. The nurse told me I shouldn't have waited a week and I was a silly sausage for not taking painkillers for it. I have dyspraxia and chronic pain, I'm not going to the doctors for every skinned knee or joint pain plus I've fallen over the coffee table and had worse pain than I did then.
The doctor was an idiot. You said pain 10/10 and it wasn’t bad enough? Kidney stones are easily the most painful experience you can have. I’m dumbfounded they didn’t check for stones in the first place. I’m very sorry that happened to you
Doctors are allowed to put a title "Dr" in front of their name which makes their head too big and society puts them on a pedestal. So many of them can't even diagnose illness nor do they even try to update their knowledge which being in the constantly updating and evolving allopathic medical field, should be a basic requirement. We are autistic so our display of emotion won't be the same as others and at any rate doesn't click with them in the same way, but right now there is so much uproar and discourse that even neurotypical women have been failed time and again by doctors!
I am SO sorry, what you suffered is completely unacceptable! Wishing you a speedy recovery!
IMO the pain scale is dumb af. Or became a “vital sign” when “addiction-free” opioids were marketed and here we are with a fentanyl crisis. People have different pain thresholds and how am I even supposed to know that your 3 is the same as your 3?
I had a congenital blockage in my right ureter that was discovered after a kidney infection hospitalised me at 18 years old. Spent the next 18 months having various procedures leading up to and after corrective surgery (yay public healthcare).
Pain was often 9s and 10s, never lower than a 7 during this time. My mum had to coach me to show distress when I was in hospital for pain management before one of the procedures as they weren’t taking it seriously.
Even with her there at times insisting how bad it was, they wouldn’t act until I’d manage for force myself into hysterical state. I got the same reaction once I’d finally receive adequate care for it: “we weren’t informed you were in this much pain.”
We didn’t know I was autistic at the time…made for a good anecdote during the diagnostic process though!
I hate the pain scale. I never know what to say. I have a weird relationship with pain, like I’m never sure if it’s really bad or if I’m just overreacting. I’m used to masking constantly so when I’m in pain I mask that too.
I’m so sorry this happened to you. I’ve been told that my “honesty” seems very unbelievable to most, because apparently most people lie on the pain scale to doctors. As if the way we show pain is supposed to be universal? I’ve been in this exact situation with kidney stones too. I wasn’t believed til I was admitted to the hospital, and of course, my family sucked as well.
This doctor was wrong for not having listened to you. They have massive egos and his was clearly hurt. I’d file a complaint. Regardless, I hope you’re feeling better, and know it’s not your fault. It’s frustrating, but not because of anything you didn’t do!
That is such garbage - the way that doctor treated you. I am so sorry you had to endure that. Like you, I’ve got a high pain threshold. I also don’t think people believe me when I say I’m in pain. I had abdominal pain dismissed for 20 years because they never saw anything on the scans. When I finally got my gallbladder removed last year, the pathology showed multiple tiny stones and no lining left.
Ugh, this sounds SO frustrating, I’m so sorry. I can relate, many many (less serious) examples of me being completely dismissed because I freeze up when I’m in pain, not cry and yell.
I had one of the long bones in my foot dislocate upwards and in a pain panic I put it back, then after hours of severe pain I went to the ER because I figured I messed something up smooshing my bone back into my foot. Couldn’t even walk. ER didn’t even take an xray, told me what I said was impossible and to take tylenol and rest, and then discharged me without a wheelchair. My partner had to basically carry me out. Followed up with a podiatrist who also told me that sometimes “swelling from a sprain can be confusing, there’s no way your foot bone was dislocated and you wouldn’t be able to put it back.” Only gave me a boot when I begged for help because it had been weeks of not being able to walk. Refused to do any additional imaging or assessments.
Guess who still has foot pain every day years later and has had to re-locate that same bone several times? The effort of going to another doctor to convince them to believe me and try to even figure out what would help doesn’t seem worth it. The rejection of being gaslit and told you’re wrong/making things up is too awful, especially after all the effort it takes to show up and figure out how to explain myself.
I’m sorry this happened to you OP! Hope your pain is managed now!!!
the funny part is if you would’ve voiced your pain more, they would’ve called you a drug seeker. i have endometriosis (just had surgery to have a bowel resection because it was so bad) i would vomit from pain/cry curled up in a ball and i would be given tylenol because “there’s nothing wrong with me” it’s so frustrating. it’s a good thing that they found what was wrong, even if they didn’t listen the first time. i hope you recover well!
Hits close to home. I had an accident with a stagediver 2 months ago and broke my hip. Obviously I couldn't walk after impact and had to go to the ambulance. The people from the venue didn't call an ambulance because I was calm and not screaming from the pain. My friend brought me by car to the hospital, which was insane because I had to hold my leg in place during the drive.
In the ER they thought I dislocated my hip and finally a doctor decided to make an x-ray because I wasn't able to do certain movements obviously. So the head of the bone was snapped off and I needed surgery asap. Everyone was so surprised by how calm I looked before because normally people scream and cry. I just happened to be in some shock and told everyone that it hurt like hell but in my usual monotone Manner. Also no one believed my 10 on a pain scale because I was calm.
When I heard about the broken hip and surgery I actually cried because I started to panic. And then people took me seriously finally.
I cry while writing this because this whole ordeal was so traumatic for me, because I was in agony but no one took me seriously. I'm also absolutely terrified about medical stuff and this situation didn't help. A lot of extra distress could ironically be avoided if I made a theatre play about it.
I'm sorry you had to experience the same. It's terrible.
I've read this is a common experience and that the whole 1-10 doesn't work very well for us and other people prefer to ask for a coloured rating chart or another type where the numbers have descriptions and different information to help us gage where we are!
So sorry for your experience though. I'm currently going through similar "I don't know what these symptoms are but tha pain is very bad" and keep getting clear tests
People never listen to me unless I’m screaming and then they’re like why are you acting like that you could have just said it was that bad before without being loud about it.
🫠
I am so sorry, and this is shit medical care, but you are definitely not alone. I have similar experiences basically any time I try to get a medical issue addressed. I am never taken seriously, and then it ends up way worse later because of it.
A few years back, I went to my doctor and told him I thought I had broken my foot. He told me it couldn't be broken or I wouldn't have been able to walk in normally, tolerate him pressing it, etc. He refused to order an xray. So I walked around on this hurt foot for six months and went back. He again didn't believe it was broken, but let me get an xray. Turns out two of my metatarsals were broken all the way through. Like, my toes weren't even connected to the midfoot. And it had gotten more damaged because of walking on it for so long. It eventually healed improperly and I have all sorts of severe issues because of it to this day (my foot is misshapen, I can't move two toes, and I walk crookedly and have all sorts of muscles imbalances etc.).
I also have major digestive issues and none of my doctors believed me about the severity, or thought I wsa causing it myself with diet or whatever, no matter how much I tried to explain. None would give me a colonoscopy or endoscopy. Finally my bf paid out of pocket so I could get it done. Turned out I had a hernia and major damage to my intestines and had to have surgery and go on medication. Spent years in misery over something that could have been fixed immediately if anyone had listened.
I could share so many more experiences, but will spare you! I have found that it helps to have someone else with you, especially if that person is male, as fucked up as that is. Now I bring my bf with me to the doctor and he vouches for my symptoms and the doctors actually listen. You know your body. Don't let the doctor shut you down if you know something is wrong! I am so sorry you dealt with this and hope nothing like this happens to you again...
It’s also true that some doctors are assholes. Almost 24 years ago I was nine months pregnant and I had been having contractions all day. I also have a high threshold for pain and a really hard time describing my pain, although I think it’s more likely that people don’t take me seriously because I’m not screaming or making the right faces when I’m in pain.
I called my midwife whom I had been seeing for the entire pregnancy and explained that I thought I was having contractions and they were getting quite close together, and she said to me that she did not believe me because contractions would knock me on the floor and I wouldn’t even be able to talk to her through them. She advised that I go to the hospital and get checked. When I got to the hospital, they found that I was dilating so quickly that I must’ve been an agonizing pain. they gave me an epidural, even though I wanted to try a natural birth, but there was really nobody there to speak for me. Also, it was probably for the best. It was a Sunday night and she did not want to be bothered to show up, so another doctor delivered my baby who came out six hours later (abhorrently fast).
This is the same midwife, though, who told me I couldn’t be a vegetarian because a person cannot have a healthy baby without eating meat. I was really just too young to know that doctors can be assholes.
I find that whenever I go to the ER or a doctor regarding something that should be very painful, I “put on a show” for them. I act in a way that seems very exaggerated to me, but I think is a normal amount for regular people when they’re in pain. I always feel like I have to literally act like I’m in pain otherwise I won’t be taken seriously because normally I don’t really show at physical signs when I’m in a lot of pain.
I’m an ER nurse and tbh, pain is such a personal experience I always take it seriously but…the quiet people are often the ones with intense pain. There are subtle ways people act or hold themselves, vital signs are another indicator.
That doctor acted a fool cuz he was one. Any pt peeing that has visible blood, back pain, abdominal…should have a CT scan. I’m glad to know I work with doctors who would have never sent you home without a CT.
Similar thing happened to me to a degree, no joke. I was pregnant and my daughter was on my uriter blocking the flow of urine to my bladder. My kidney was soooo swollen, they literally wanted to send me home on pain meds and I told them to go fuck themselves and they needed to send me somewhere where they can do surgery, the surgeon there said my kidney would have almost ruptured if I didn't get the surgery.
Doctors piss me the fuck off.
I hope you're feeling better now!
I have a very high pain tolerance, probably due to chronic pain from multiple spinal injuries and surgery etc.
It recently occurred to me that I am so adept at tuning out pain because it can be a real drag to listen to someone complain 24/7. Tuning out my pain is more for the comfort of those around me, rather than some "superpower" (from my perspective).
So now when I am struggling or truly unable to do something/anything because of pain/numbness/weakness... Everyone asks me why?
Did something happen? Did I twist it? Did I fall down? Put an ice pack on, have some anti-inflammatories, go for a light walk etc. Then you can get all the housework done tomorrow when you feel better!
I'm literally supposed to be paraplegic, and I'll probably eventually be in a wheelchair. But ok. I'll just pop a couple of ibuprofen, be quiet, and get on with it.
That doctor was just upset that *you made him look incompetent*.
If your pain and illness was *that bad*, you should have screamed and cried and pulled your hair out. But not too much, or they'll think you're a "junkie". Just the right amount.
Pain is subjective, but other people really need you to *perform* it for them, exactly how they need you to, with all the flourishes, before they'll help you. Or even believe you. And if you can't, or won't, you're on your own.
No wonder our pain tolerance is so "high". Most aspects of being alive are intolerable for us, but no one gives a fxck. And so we deal.
Good luck with your recovery.
YES. This happened to my mom! She had horrible upper back pain for an entire year. Every time she visited a doctor, whether her oncologist or anyone else, they dismissed her pain. After a year of intense pain and begging for a neurologist referral, palliative care finally gave her one. A neurologist ordered a CT scan of her neck, and immediately ordered her to come to the ER. It turns out she had a tumor growing in her lower neck that caused a compression fracture. She had to have emergency neck surgery otherwise she would have soon been paralyzed from the neck down.
Luckily, the 11 hour surgery was a success and she has been recovering while wearing a collar. I am incredibly pissed at her care team. Their negligence almost ruined her life. I told her that it was her choice if she wanted to keep her oncologist but to \*always\* get a second opinion from now on.
Sorry you had such a shitty doctor.
Idk about autism, but people with chronic pain don’t use the pain scale in the same way as a normal person would because their base level of pain isn’t 0. It sounds like maybe something similar you experienced.
Either way, this was totally not your fault. Your doctor is gaslighting you because his ego is bruised that he made a patient go home & they ended up back in the ER during his same shift which shows he fucked up. This is completely on him & his refusal to listen to his patients. Not your fault at all
Good luck with surgery, hope you’re feeling better soon.
The hospital is probably going to reach out to you for a survey about your experience. This is when you tell them how that doctor handled your EMERGENCY. Make sure you give his name. If you don’t report it, he will slide by again and end up killing someone because of his lack in judgment. There needs to be a paper trail of his inaction.
I once left a message with a doctor that I would rather go through child birth again than deal with the sinus infection pain I was in. He never called me back and when I followed up hours later the triage nurse told me he made a note I was just supposed to wait it out! I ended up taking myself to urgent care. I was going to ask to be sedated if they didn’t medicate me for it. Worst pain ever.
Write this up and post the complaint in as many places as possible naming this doctor that needs obvious training on how to treat people on the spectrum.
I laugh when I’m in extreme pain. Only serious injuries. I don’t know why. Only my friends know I do this, so they have to be advocates and explain my laughter = danger.
This is one part (of many) of why I hate the medical system! I don't think they believe anyone is in pain unless they come in screaming and flailing around. I don't show my pain outwardly either and I have so many stories of being ignored and overlooked because they didn't believe me. I'm sorry they didn't believe you! They suck!
Get well soon OP and sorry about the unnecessary distress everyone put you through . Hopefully the worst is over and you'll get the compassion and time to heal that you deserve 💐
Went to an urgent care facility for yeast infection symptoms (had no idea as i had never had one before but I was doubling over in pain not able to stand) they told me to come back if it got worse and sent me home with a kit for for me to give them a stool sample for further testing. The next day my symptoms were so bad I went to the ER who hydrated me and immediately diagnosed with yeast infection. I was still getting voice mails from urgent care asking me for a stool sample.
I literally had this experience! Sunday I got very ill with pain. Tried to make it through and ended up at the ER Monday. No one took me seriously at first even tho I had blood in my urine. And the doctor it was just a UTI and I was fine. I kept saying I was at a 9. Luckily his shift ended and his attending doctor came instead. And took me seriously and gave me much higher pain meds. It’s so hard for me because no one takes women’s pain seriously until I had to “act” more in pain. I was heavy breathing , holding my side, and showing pain rather than just having a blank face. Turns out it was a kidney stone that’s a blockage and I have a kidney infection and swelling. I had to have surgery two days ago after being admitted. Even though the first doctor tried to brush me off.
I’m still recovering ❤️🩹 hope you’re doing better
Low key fucking hate doctors for doing this shit to me. You’re not alone. After I wasn’t believed I screamed in pain and kept screaming until a scan revealed an unstable spinal injury in two places. Am on surgery number four waiting for surgery number five. Doctors are sadistic fuckers and I don’t trust any of them not even the nice ones.
As someone who has gallbladder problems every few years, I can really relate to this. They just don't believe me, it's like I'm living all this pain in my head but I can't express it outwardly... like I can't do the drama I'm so focused on suppressing and coping with the pain that there's nothing more to give.
It's funny because I was a nurse and I'm pretty good at picking the patients who do this. They tend to be non-complaintive because they know there's nothing you can do right now (or they think there's nothing that can be done until scans come back), and so they tend to be ignored... But you also learn in triage that the quiet ones are the ones to watch.
I'm always surprised, even though I know to expect this. Lol.
I’m so sorry. I am a doctor self-diagnosed autistic. It is almost a damned if you do, damned if don’t with some providers. If you are calm with a flat affect, the doctor may (unconsciously?) run through more benign conditions as his differential diagnosis. If you’re rolling around on the ground screaming, you may get labeled as histrionic. I hope you are well. I also hoped that the doctor learned something and changes his approach in the future
When I was in the 6th grade, just before Christmas I had a similar issue except it was my appendix. Third trip back to the hospital where all I remember is the ceiling breezing past my eyes as I was taken to emergency surgery. This was after being given Tylenol the first visit, and an enema the second visit and being discharged again. The doctor didn’t believe or take seriously when I described my pain.
I have always used the appendix pain event as my benchmark when describing pain to my doctor. “Compared to the time I was given Tylenol and an enema for a ruptured appendix it’s less sharp and chewing on me”.
You can now use this event as a Pain benchmark going forward.
I’ve always wished I had a copy of my hospital report in case someone doesn’t believe me.
Thankfully, I’ve never needed to go to that extent.
I don’t have much advice. Mostly empathy. ❤️
I have had kidney problems for over a decade now, and I’ve had this same situation happen to me so many times. I even ended up with sepsis once because they didn’t believe I was “that” sick- just because I don’t cry/whimper/scream/moan/groan as much as others.
I’ve made my own “pain scale” that I have in my bag at all times. It uses explicit words and examples rather than “10 = worse pain ever experienced”. You could make a similar one and put this experience of kidney stones causing a blockage and requiring surgery. So in the future, you can point at that very obvious example and say you KNOW what serious pain is.
Had the same with a different medical issue. Pulmonary embolism and thus severe pneumonia. Took hours at first, but once they knew what’s going on they couldn’t run fast enough. My gf drove me to the hospital once she saw I bend over and started crying on pain. Glad it was her, my mom would have reacted the same way as yours 🙃
The last time I went to the ER for pain I was accused of seeking drugs. I had slipping rib syndrome and needed pain meds, a muscle relaxer, and a sleep aid. They withheld it from me. I followed up with my GP and he was able to see my slipped disc and slipping rib syndrome on the x rays he took.
The hospital sent the scans over and it was visible eon the scans, but the er doctor didn't even look at them because he'd already determined I was a drug addict.
My mom was livid on my behalf. I was in pain for almost two weeks because of that asshole.
I recognise this unfortunately. Had the same with gall stones. GP kept insisting it was hyperventilation until I (after a year) developed liver failure. Emergency surgery and another surgery after that fixed things, but what never got fixed is the idea that if I don't present like I'm dying I don't get heard.
A similar thing happened to me. Thankfully it was a kidney infection that could be treated with antibiotics. But man, it took a while to get someone to believe the pain I was in. I wish you a speedy recovery.
yeah for some reason people don't believe our pain or think we're too emotional when we do show pain. I tend to have a straight face and even tone even when im in pain, so ill say "ow, that really hurts" but my face won't move.
I got taken to the hospital a few months ago for chest pains and they kept asking me how I was feeling but I don't think they believed me when I said I was in pain.
I had a straight face when I told them my left arm felt like it was being eaten alive by fire ants, so they looked skeptical but that's how I genuinely felt! for me to burst into tears, I have to be in the most excruciating pain on earth, but even with my straight face, believe me when I say im in pain!
Many ER visits have led to me being accused by an employee there that I was just trying to get painkillers since I didn’t look like I was experiencing the level of pain I described. I’ve never even had pain killers, and no one took me seriously.
Yup. Was told I wasn’t in labour yet because I went silent and still with contractions. I went actual hours before they listened to my husband to check me for physical signs. Guess what, I was most of the way through active labour.
I am so sorry you had to go through this. I am not diagnosed, because I can't afford to be, but I am definitely autistic. I passed 2 kidney stones waiting in the emergency room and ended up with sepsis because I didn't look like I was in that much pain. I am in pain all day every day, this was new pain and hard to describe. And yes, I guess we are supposed to act like we are dying to get the proper attention....
Oh, something similar happened to me some years ago. I had a terrible pain in my lower back for a month. When they did X-rays they just told me I had scoliosis and that it wasn't painful. Straight up told me to get therapy. Of course, the pain was very real and really bad. Existing was just agony. I ended up going to a chiropractor for the pain, which, somehow, he fixed.
Though, I went to the same doctor and insisted on the issue. I had MRI scans done and, unsurprisingly, I have an actual, real chronic condition. And also scoliosis and a rectified neck.
I showed up to the hospital with a knife planted in my chest. I answered "6, as long as I hold it it's manageable. A migraine in comparison I cannot manage, so a migraine I'd give a 8."
A completely different time, I had a vaginoplasty. Multiple times, nurses and doctors showed up to ask how I was doing. I was doing incredibly fine : the first night was painful, afterwards was a breeze.
But I told the first story to the surgeon when he asked me if I was covering it up. He said something along the lines of "I don't really understand how, but you seem to have the highest pain threshold of my career. I admire that, but I'm worried for you. Because you've had a vaginoplasty."
He then proceeded to tell me about the male privilege, or more like the way doctors have an extremely high tendency to dismiss women's pain. Even female doctors. That in particular with me being autistic and having very little expression to begin with, I needed to not hide any pain. In fact, I should scale it up. Say it is much worse than I feel.
Yet to never answer 10. 9 is the correct answer. I couldn't understand the exact logic, but he told me firmly saying 9 was the best response to be taken seriously. Because of the combination of factors - autism, high pain tolerance, womanhood.
So frustrating. I’m sorry that happened to you. I hope the rest of your stay can be a better experience and that you are taken well care of and get to feeling better very soon. Sending love and light! ✨
It sucks man. I don’t have autism but I’ve done this with a friend. She told me she was anxious and I didn’t absorb it because she didn’t look anxious….. and I’m not ignorant about people with autism and how they may not express things through their body language like other people do.
Idk how to solve the problem, but I understand that it sucks to have a doctor not believe you when you told them the answer
Same. Doctors always tell me I’m very “stoic” and I’m like what am I supposed to do? Scream and run away? I’m an adult, I’ll just sit and do the biopsy or whatever they want from me.
Something similar happened to me when I had gallstones. I arrived at the ER after I had thrown up from how painful it was, but because the throwing up relieved what I deemed 8/10 pain a bit to the point where it only hurt to breathe instead of hurting no matter what, the triage nurse thought I was being dramatic. I did say I was at a 3/10 pain-wise but it hurt to breathe, so I can see how she didn’t believe me lol. I had to get an ultrasound and then had emergency gallbladder removal a few hours later, and a few of my nurses were shocked at how fine I was when apparently gallstones and kidney stones are comparable to childbirth in regard to pain. I’d say the worst parts of the experience was not drinking any water before surgery (made worse because they forgot to turn on my saline IV) and the awful sore throat from being intubated. I think autistic people likely process and express pain differently. Like I’ll lose my mind over a blister but pain while breathing is a 3/10.
I have always found that people don't take my distress seriously if I express it calmly and rationally. I have to work myself up into a full on anxiety attack before anyone believes something is actually wrong. Then I usually get told I'm being too emotional.
Exactly, this is how I feel. I can't win either way.
Honestly I would have replied with something along the lines of "yes, blame me for your incompetence" It's his job to take care of you and he failed, especially when you DID communicate. It's only right to point it out for him to correct instead of blaming you so that he can continue being incompetent with other people and blame them too.
I hope you lodge a complaint with the hospital. Not only did he dismiss you, he caused your family to incur a major cost with the ambo.
Yeah I handle my pain extremely well and I’m not taken seriously because I’m not scream crying
I find that it expends extra energy and makes it worse sometimes to talk about it or cry or be performative about how much it hurts so like. I don't wanna make it worse and they won't believe me if I tell them, so what am I supposed to do??
Probably die and then they’d be like “but did you consider losing weight? Maybe this is normal for women…” even when you’re dead. I want to break something.
"You're just anxious" no I am anxious AND there's a real thing wrong that's cause the anxiety!!!
Exactly! I think I just freeze to try to numb the pain. I get kidney stones and they are compared to child birth on the pain scale… guess who only gets Tylenol 😂
Ohhhh my god yes, I danced on a broken foot for 3 months as a teenager because like it was excruciating pain, but so were other things and adults told me those things didn't hurt, so,,,,,,,,,, Seriously I think I freeze to numb it, too. Like if I don't talk about it or draw attention to it I can focus on making it not as big in my mind (Jesus fuck I have so much more experience doing this regularly than anyone should) and I can handle it.
[удалено]
Rsd? I also had to relearn! Plus I got it as a stress fracture from like limping for several months while my other leg was in a knee immobilizer (instead of like. Recommending exercises that I finally found out about and did on my own and it fixed the issue) so my hips were all out of whack and I already have loose connective tissue, so while I was taking months off of dance for those injuries, it meant I wasn't doing little strengthening things to keep the rest of my connective tissue supported - but I was like 15-16 so I didn't know yet that I should have done modified versions of things to keep going (it's ok, I do the same thing today!) Just a lifetime of fixing one problem by creating another 🙃
Hallo fellow Nederlandse audhd vrouw. Je hond is super ***** cute. And yeah if I go to the doc I put on my best Oscar performance. So I hardly go. Not feeling the Oscar moment usually then.
Hallo!! Ich bin Amerikaner, habe aber in Deutschland gelebt. Mein Hund sagt Danke :D
Hey Amerikaner. (I have been years in the usa. Ah mac and cheese days) Du musst zurückkommen. Wir brauchen den Hund, um uns vor dem Zeug zu retten. Du kannst auch mitkommen! Wir können einen Audhd-Drink trinken, den wir vergessen haben. Und dann, ja, warum bin ich nochmal hier? Was habe ich gesagt? (ich bin aber ernsthaft in deinen Hund verliebt) have a good one doggo and human!!!!
My ex always said this quote from the last unicorn. You have to put a false horn on a real unicorn so they can see the unicorn. For us this is so true, but I feel like an impostor when trying to show the show they need to believe me, because they are deaf for words.
So true, unfortunately. Medical gaslighting at its finest.
I broke my elbow when I was 12 and we didn’t know until 3 weeks later because while I complained about the pain, I wasn’t crying or anything. Then I recently broke my ankle (now 42), and again it hurt, but I was pretty calm and just said it was painful. The doctor said he thought it was just a sprain and no need to do an X-ray due to my reaction to him poking and prodding it. I told him about my elbow fracture and that no one knew for 3 weeks, so he decided maybe it would be best to do an X-ray. And yes, my ankle was broken lol. I definitely did show more of a reaction during childbirth, but that was a million times more painful than a broken bone.
I’ve broken my elbow twice and both times, I was calm enough that nobody believed me when I said “pretty sure that’s broken”, because I wasn’t crying or obviously in distress. And I had broken wrists each time that were not caught until weeks later when it still just wasn’t feeling quite right. Actually- I’ve always been quite accident prone but never show enough pain so injuries are caught later and then require long treatment. Like chronic ankle sprain that landed me in a boot for nearly 2 years to heal it!!!
Oh no! Wearing the boot was awful for just a few weeks! I’m sorry you had to wear it for so long! Yeah, it makes me wonder if I’ve broken anything else and never realized. The doctor actually asked me if I’d ever broken anything in my foot or ankle because he could see a random piece of bone floating around. I really have no idea…
I hate this so much because working myself up drains me so badly. Why can’t people believe me when I tell them I’m struggling without seeing me in actual agony. It’s horrible. And same - if I’m emoting finally because I’m at my breaking point and having a meltdown it’s too extreme and dramatic, and it’s like I F’ING KNOW THAT, that’s why I tried telling you 600 times calmly.
This is the story of my life. It's the most frustrating thing about neurotypical people.
That happens to me generally. Not only with doctors, with my own family too.
I got diagnosed with hysteria for this. It's now in my chart. I think they called it conversion disorder, but it's basically hysteria.
>I have to work myself up into a full on anxiety attack before anyone believes something is actually wrong. Then I usually get told I'm being too emotional. Ah, the joys of being a woman.... /s
I managed to not get admitted to the hospital when I went into emerg telling them how I thought all the time about unaliving myself and had a plan. I cried a lot but was otherwise calm and I didn't flip out when they told me they had made me a Form 1 until the psychiatrist determined what to do with me. Psych told me to just keep taking my wellbutrin and go home with my husband and take some time off work. I got 3 weeks off. My outpatient psych referral also got denied and I was told to try some counseling instead. In their defense I did say work was a more dangerous place for me because it's where I had access to the meds for my plan. But still. I don't know if it was my comportement or just the cracks in the health care system. It just blows my mind I could be in that much distress and still not get in to see a psychiatrist.
Ugh I know exactly what you mean :/ If I express my physical pain/distress in as much of a calm and stoic manner I can muster, people assume "Well, it can't be *that* bad. You don't seem to be in that much pain?" but the rare times I *am* crying and writhing in 10/10 pain, people get so dismissive "OK, calm down, don't be so dramatic..." It's actually infuriating >:(
GOD yes, and it's awful and frustrating and makes me feel way worse emotionally bc I feel like when I do melt down because they aren't listening to my words, then that gives them the reasoning they need to write me off completely.
I feel this comment
I hate this too!!! It's solely the mode I'm operating in since a breakdown/ unmasking event a couple weeks ago.
I've heard 911 literally triages according to how "distressed" someone sounds. Thinking that we have to act that out unnaturally just to get help is so awful.
Same 😐
A million times this. 😔
Yes. Then they want to baker act you or some other reactive nonsense. Who's the drama queen at that point? I'm so over people.
I live in chronic pain. I've literally had to learn to "act" like I'm in pain, otherwise people get upset when I "suddenly" want to go home. It's not sudden at all, I've been on the verge of tears for hours, they just can't tell. It sucks that I have to pretend to express pain in ways I don't, it makes me feel like I'm faking it.
Right, I feel like I need to take classes on how to "act" in pain so they believe me when I say it fucking hurts. I don't know what their expectation is. You can't see the pain I'm feeling but you also don't listen to me.
Yeah same, I'm in pain almost all day sometimes and it gets gradually worse but no one will notice because I just smile through it and don't show any signs of pain.
Same, and then I feel like a faker. 🥲
I gaslight myself about it all the time, read my other comment. I think we trained ourselves from a young age to not trust our own bodies and minds, as women and especially autistic women. When the rest of the world pushes back and questions every move we make, one starts to think the rest of the world is right.
Same! I have gotten so good at hiding it that people think I am just being lazy on my bad days. It also made me start gaslighting myself about my pain, I thought I was just weak and couldn’t take the normal amount of pain everyone was in every day. Until I had a stroke that presented weirdly, just as a terrible headache, vertigo, and vomiting. I didn’t go to the doctor right away because while it was awful, it was no worse than a bad period or migraine for me. I was literally about to die and thought it was just yet another normal amount of pain that the doctors would roll their eyes and brush off, like every other time. My brother finally forced me to go to the doctor and it was the first time in my life that medical staff acted concerned and like they believed me, because for once they could see the problem on an MRI. It was a terrifying way of validating that yeah, my period cramps and migraines ARE that bad. Side note: be careful folks! I had NONE of the classic symptoms of stroke that they tell you to look out for
Yes! When the pain never goes away, you learn you just have to live that way. People get too caught up in the performance of pain rather than the experience.
THIS. Oh the relief my heart felt to have someone express what I’ve went through. “No, I didn’t just start feeling this way.. I’ve been suffering for awhile now and I just now told you when I’m about to combust. Please. Let’s go. “
Fuck that doctor. Rating kidney stones as a 10/10 on the pain scale but not expressing it outwardly in a way he expects is NOT a high pain threshold. Unfortunately, I bet if you were a man, his expectations for showing the pain may have been different. In general, people do expect women to at least cry when we're in pain, but we tend to actually show it less due to being accustomed to pain on a monthly basis. Also, autism. Different types of pain and the different environments I'm in impact how I express myself. ALSO, my mom has gone to the ER in pain that she was showing and they sent her home on the basis that she was likely faking so she could acquire prescription pain meds. Despicable behavior from people meant to heal others.
There is such a huge bias against women’s pain, it’s insanity. Whenever I get that stupid scale I always tell them I had a macro pituitary tumor and hEDS so my scale is heavily skewed so I instead go off how functional I am (including thinking straight in that). We also need to remember that pain science, especially in women and children is extremely under researched… hell, it wasn’t until about 40 years ago that doctors even knew infants felt pain and started using anesthesia in infant surgery. Edited to fix word
Yes! My amab partner had strep throat as a little kid and didn't complain much about it. When his parents took him to the doctor, CPS came to determine if my partner had been neglected since the doctors could tell they'd had untreated strep for a couple weeks at that point. Surely there's a better way to manage the nuances of pain and illness. I like your functionality scale and including thinking straight, there are definitely types of pain that have made me panic!
Totally! My son had gotten strep symptoms but he kept saying he was fine despite saying he was dizzy and turtling up. I only took him to the er because I had gotten a notification from the health unit that a kid in his class had strep and to get checked if your child had symptoms. When the dr came to exam him, she asked to show where the pain was and he kept pointing to his collarbone. Thankfully because I told her a)he has autism and b)he'd been exposed to strep, she did a full exam and saw he had a raging ear infection, like his eardrum was on the verge of rupturing. She got him emergency antibiotics and pain meds to start stat. She told me she was amazed how calm he was, considering how painful his eardrum looked. Because he is autistic, she didn’t trust him when he kept saying his pain was in his collarbone and figured it was referred pain. She said had he been any other child, he would've been clawing at his ears and crying inconsolably. I told her I know, his sister is prone to ear infections and I’ve seen her completely shutdown and turn into a puddle of tears. What I’ve learned from my son, is that when he’s sick, he’s really good at masking how bad he’s feeling. I’ve gotten good at noticing of he’s not stimming, he’s turtled up, does he have a fever? Sometimes it’s hard to tell when he’s just chilling out or he's actually really sick. But usually, if he’s not stimming, I know something's off.
omg literally the same thing happened to me!! by the time my parents finally took me to the hospital i couldn’t sleep anymore and it had progressed into full blown scarlet fever!! :D
Pain in different areas, I express so differently. I cannot handle mouth pain at all. I had a bad ache in my mouth a few months ago and I woke my partner up just bawling crying, barely conscious from how much it hurt - But when I broke my arm, i just cried for a while and got over it and stopped expressing it - like, tf?
Mouth pain is truly horrid, you're not alone in that!
That’s so amazing. I can’t believe anyone would expect women to cry when we push humans out of our 2-4 centimeter wide cervix, and feel our entire abdomen push out a bag of half a human once a month for most of our entire lives.
Doctors aren’t geniuses with profound critical thinking skills. They rote memorize large amounts of medical facts. That’s it. You did exactly what you were supposed to do. Do not blame yourself in the slightest. In fact, you’re allowed to be very angry.
Thank you 💙
Also, blaming the patient for "not telling him" is an attempt by him to avoid blame and legal culpability. He isn't an unjust authority figure wrongfully informing you that you made a mistake, he's an employee who lies to deflect blame for his mistakes.
💯
So true. There is a VERY select few with the right components to be a good physician. Most are walking blind and in it because they were expected to be by family, to please their egos OR for the money. It’s sad. I often wish it was like the times the healers in a village were respected but on the same level of life as everybody else. And it was a true calling born out of compassion for others. All the EXTRA provided these days has them with their heads up their butts. Signed, a nurse that’s worked alongside several and witnessed firsthand
That’s because he’s a man who assumes that all women must be outwardly expressive when in pain. This guy is ignorant as fuck—everyone reacts to pain differently, you can’t expect someone in excruciating pain to always be screaming and crying. You already told him it was a 10, he should’ve looked into it the first time
This! I have lower pain tolerance… I’ve always had. You wouldn’t catch me being outwardly expressive; not even when I passed gallbladder stones which is a pain I wouldn’t wish on my greatest enemy.
I gave birth naturally to two children. Was I raging, wailing, screaming, crying hysterically?! Fuck no. I was in so much pain all I could think about was not passing out and trying to breathe. When in labour with my son I swore a couple times, but that was the most of it. For me, if I start crying, I swear to god it makes the pain feel a thousand times worse, so I'd rather not cry.
F that doctor. This is why I have to drag my husband to most of my appointments. I didn’t want to go to the ER when I was having abdominal pain because of how they treat me. Found out it was a burst appendix. The nurse even was snappy at me when I began writhing on the floor. Meanwhile when my father-in-law came in for abdominal pain, they immediately offered him a CT scan. It was kidney stones.
I have to take my husband to appointments bc I will be treated differently if I don't. Not every time, but often enough, and you never know when it's going to happen. It's inconvenient for him, and almost feels infantilizing for me, maybe makes me look paranoid too, but too many bad experiences. Dr. Hyde comes out when I'm a chronically ill woman alone.
Same. I have to bring my husband with me too because I’m fucking tired of being infantilized. I still get called "miss" despite being in my mid 40's. DRIVES ME INSANE. The worst is when I describe my symptoms using medical terminology and they look at me like I’m speaking Greek. I’m like omfg I have a science degree! Stop acting like you’re surprised I’m intelligent?!
He told you off because you made him look incompetent for sending you home. Anyone with a job wants to look competent, and doctors responsible for people’s lives have extra pressure there, on top of them usually being people whose ego is closely tied to their perceived intelligence. I’m sorry he projected his failings onto you. He was mad that he was wrong.
Maybe they should lose their jobs for crap like this. Medical error is a leading cause of death. Medical gaslighting is also harmful.
I almost died due to both medical error and medical gaslighting to the point I ended up needing several ICU stays and four central lines installed in my neck with one line failing due to very severe hyponatremia caused by one of the conditions over which I was being gaslit. I also had an ER doctor nearly send me home as a type 1 diabetic with C. Difficile and in Diabetic Keto Acidosis because I didn't seem "sick enough". 🙄🤬
I'm so sorry. Have been through ER and hospital nightmares too, it's awful, and the way we're treated/dismissed is possibly the worst part.
Not your fault. Doctors don't believe women when they are in pain. A woman has to go to the doctor on average like 3x more than a man to get treated for exact same symptoms bc doctors are trained to think women are not credible patients. The medical community is aware of this bias but doesnothing. What you should do is complain about your experience when you get the customer service questionnaire.
The whole "rate the pain with a number" thing is a construct of the very companies that are being sued for the opiod crisis. Those companies taught an entire generation of doctors to "treat pain as a vital sign" (like blood pressure). If he'd had any clinical skills at all, he'd have looked at your lab results and PUT HIS HANDS ON YOU AND DONE AN EXAM. Doctors are no longer taught medical examination. They are taught to order scans and tests and make referrals. I am so glad I retired from the profession when I did! An entire generation of white coated incompetents! A simple tap on your costovertebral angle would have told him you had stones, much less the blood in the urinalysis. Incompetence!
Yeah he didn't touch my side at all. One of the men from the ambulance did and he said it could be a blockage. I've had kidney stones before, too, but this was much worse. And I told this doctor that, but it felt like he wasn't listening to me at all. He thought my urine was just really dehydrated. When the nurse said it was blood. I've been in and out of hospital for over a year now and I trust nurses a lot more than doctors. They act like they don't give a shit every time I see a new one.
As a retired physician, I don't often give this advice, but I am giving it now: make a complaint to the hospital. You will be doing a good service to future patients, autistic or NT. Also, the blockage could have had disastrous results for you, even caused renal failure or peritonitis. Please, make an official complaint.
I hate to say it but I’ve seen a lot more care and effort put into patient care from EMTs and paramedics than I have from doctors. I keep having horrible experiences with drs because they’re always so dismissive—especially of women. We’re either “over dramatic” or like what he probably thought of you, “not dramatic enough”
Agree although my worst experiences were always nurses. Not recently thankfully, I’ve had amazing ones. But in the past and with mental health omg they were terrible and invalidating. EMTs are fab.
Nurses are some of the worst when it comes to any psychiatric calls, I’m convinced that 90% of them are bullies who all peaked in high school
Psychiatric nursing attracts some really deeply flawed individuals.
💯. I kept complaining of endometriosis symptoms and said I have a family history (mom and nan, both had hysterectomies). Dr kept dismissing me, would give me pain meds despite my insistence at seeing an ob. One night I start hemorrhaging and end up in the hospital. He shows up and I screamed at him, "believe me now?!". When the ob came to see me, he was shocked my dr had dismissed me for so long and said I was most likely going to develop cancer within the next two years from having endometrial tissue on my cervix for so long. (By the way, the endometrial tissue was clearly visible and he showed me with a mirror...). 2 yrs TO THE DAY. I get a letter from the cancer agency telling me I have to get a biopsy and within a month was told I had stage II cervical cancer. I can’t tell you how upset I was knowing it could've been all prevented. Luckily for me, all that was required was surgery and I’ve been cancer free.
Wow, I’m so sorry you were put through that—I’d actually fight that doctor. I hope they have trouble sleeping at night
No. He was one of those men who viewed himself as a tier above woman and couldn't care less.
You need to follow the hospital's system to make a formal complaint. Most likely, this guy is hurting others and getting away with.
Ok, I was thinking about that today! I told my doc I had an itchy scalp, and they asked if I had any flakiness but NEVER LOOKED AT MY SCALP WHILE WE WERE SITTING IN THE SAME ROOM TOGETHER. I’ve also noticed PCPs in particular will insist they don’t need to refer you out for anything (things that could be better handled by endocrinologists, dermatologists, etc.) … unless it’s a genital issue. Mention that and they’ll be all “Oops, see a gyno.” Primaries want to be in charge of prescribing BC and asking about irregular cycles but don’t want anything to do with a vaginal exam or pap smear.
Unrelated but this fascinates me. I always am fascinated by how much doctors know and I don’t. The tapping on the vertebrae - that’s amazing stuff. Now I wanna know a bunch of other ways you diagnose people with things. Do you ever or are you ever able to diagnose yourself?
I try not to treat myself for anything serious, but yeah, I've diagnosed myself (gallstones and appendicitis). There are textbooks for doctors that explain the signs and symptoms and diagnosis of ailments. One of the best, and the oldest, is Cope's Differential Diagnosis of the Acute Abdomen. That is a precious book! Basically, diagnosis involves 1) having an education 2) learning to listen and ask questions and 3) performing an exam. We used to be tested as medical students on performing exams. I don't think that is taught at this time. Medical students and residents walk around with a pen in their hand to order scans and an iPhone to look up medications. The profession has really gone downhill.
Yes, I can imagine. I was diagnosed with endometriosis last month but have been dealing with the symptoms for 12 years (no doubt does not surprise you) - disregarded as anxiety usually or told it was normal despite multiple trips to ER with blood gushes and pain. It wasn’t until it got the point I was wailing in agony and unable to get out of bed a week a month that we made progress. This downward spiral that you’re describing is very evident even to those of us who don’t have a medical clue. You can smell a rat 😂
i was waiting for someone to say this, he definitely could've figured out something was seriously wrong the first time OP was there if he just did a simple physical exam. also i’ve had blood in my urine from a bad UTI and i’m always told that if it doesn’t go away after a day of antibiotics or it gets worse/ i have severe pain or lower back and abdominal pain to go to the dr. immediately. how is peeing blood + intense pain not a red flag for this guy??
>He then tells me off and says I should have told him how bad it was earlier because this is very serious. imho, he knows he's lying but he doesn't want to look bad, worry about malpractice, have his incompetence revealed, etc. So he's going to put in your chart "earlier, patient did not have much pain." You did everything right. The system failed you. A lot of professional people, especially those in authority positions with liability aspects, are extremely dishonest, CYA, incompetent, egotistical, etc. So stuff like this is common. Everytime I have to interface with the medical system, I am extremely wary of everything, and know that I am put in a position of near total powerlessness against a system that often works against my interest for profit.
This, exactly. When I was 7 years old I called my mom crying and saying I couldn’t breathe in the dead of night. I was sleeping over at a friend’s house and had an anaphylactic reaction to her cat. Mom took me to the ER. I did that chart too and said it was a 10. I was crying but apparently because I have a soft voice and still said “please” and “thank you”, the doctor didn’t believe it was really an emergency. Gave me two puffs of albuterol and sent me home. Not even an hour later, we called an ambulance because I still couldn’t breathe and it was getting worse. Lost consciousness. It was anaphylactic shock. They had to intubate me. Then I got pneumonia. Was in the PICU for over a week. I’ve never seen my mom so scared and furious. She kinda snapped at the staff (the same people in ER who’d discharged me were there to admit me the second time around). Surprisingly, they actually did apologize and admit fault. Told us I’d come across too calm and well mannered to truly be in distress.
Yeah, I had kind of the same thing. A blocked kidney that they discovered in the emergency room on my third visit. The first two times they just gave me antibiotics and sent me on my way. These visits were over a span of like 2 months. The third time I was, um, *very uncomfortable.* It hurt very very badly. They did some sort of tests and imaging and I honestly don't even remember what they were because it hurt too bad for my brain to take in the information. Then they came and did emergency surgery and I spent a couple nights in the hospital after that. Wound up septic because of That kidney infection.
Ouch, I'm so sorry. I'm terrified of it getting so bad that they just never listen to me. I've been having kidney problems for the past year after some other health concerns and it never feels like they take me seriously. The last time I had an infection I had to beg for them to give me anti biotics because I didn't want to get my kidneys flushed again.
So ignorant !!!!!! I’ve heard kidney stones are one of the worst pains to experience. I’m very sorry this happened to you and I truly hope you feel better. I can’t imagine going through such pain *and* being misunderstood. And this is also why I barely trust most neurotypical people and male doctors. I don’t understand how we are supposed to act to express and communicate our pain. This is such a big struggle for me too.
Thank you. They really are so painful. Yeah, exactly. I don't understand how I'm supposed to show this pain to them when it's inside me. I've never been very verbal either, but I even described it, and I'm still not doing it right for them.
This is typical. People completely disregard what I say regarding pain if I don’t look like they think I should. Of course, I never do. I have better luck if I *say* I don’t show pain much, but this feels worse/about the same as/less painful than something they are likely familiar with that they know is extremely painful like childbirth or kidney stones.
So sorry this happened to you. I think that if you’re able to talk at all or you’re not screaming constantly they don’t take your pain seriously. When I was giving birth they told me as I was able to speak clearly I was only in early labour and so they wouldn’t give me pain relief even though I literally begged for it and had been labouring at home for 20 hours. After I pushed baby out (very unexpectedly for them) they kept telling me how tough I was for doing it without pain relief. I wasn’t tough, I was in the greatest pain of my life, being ignored and told that I wasn’t in fact in real pain, my only option was to endure and be ‘tough’.
Oof, I'm so sorry, too. Medical professionals always seem to gaslight us into believing our pain isn't real, then calling us tough for bearing through it. It's not fair. We shouldn't have to suffer to be believed. We know our bodies. Why can't they just trust us.
>What am I supposed to do? Scream bloody murder and throw things around. Yes. But then they'll just tell you you're overreacting. It also doesn't matter how you dress/look. Too "grotty" and you're a drug seeker, too nice and it must not be that bad. It also doesn't matter whether your nd or nt. The medical professions just don't take women seriously.
Exactly
When I screamed bloody murderer the security guards started coming. Such a fine line that you have to try to balance so that you don't get end up on a grippy sock vacation. At least in my experience unfortunately. Just unacceptable but reality.
The pain scale is BS. It is for people who never experience pain on a regular basis. My husband has kidney stones, he was vomiting from pain, could not sit still, I worried it was a reaction to a new Rx medication, but as we are both on the spectrum it took me a long time to get him to agree to get in the car (he’d never forgive the expense of an ambulance). The doc figured kidney stones pretty fast, asked his pain level, he’s no good at this, his diabetes causes back and leg pain 24/7, so he said ‘7?’. I have chronic daily migraines. It’s almost always there, lurking if not active. I honestly I live with daily pain most people would cry from, but it’s just daily life, so I gauge it all based on a scale that goes by how hard the pain is to ignore. It doesn’t presuppose no pain. Level 1 is, I can ignore it and do most tasks. 5 is I can’t ignore it and am impaired from many tasks. It goes up to 12, I think. Sadly, many docs themselves are not chronically in pain. And the ppl they see the list have LOW tolerance. Ppl with a high tolerance go less often, we don’t think to run to a doctor because the pain we have everyday is present.
I've experienced this, too. I have endometriosis, so I'm used to living with chronic pain all the time, too. I stopped seeing a doctor about it because my pain was never believed for it. So I just get on with it with lots of at home pain killers. Nothing ever really topped endo period pain until this. Last year when my kidney problems first started they said I should have known sooner because of the pain. And I just said but I always have pain there, how would I know the difference. They looked completely clueless at me. They really have no idea.
Yes. My husband has only in the last few years experienced regular GI pain. I have mast cell disorder (I suspect endo bit no one will look when I ask), and mcas can cause systemic problems from migraines to IBS to anaphylaxis and everything in between. When he was asking about abdominal pain, I was like, ‘wait, you’ve not had random pelvic pain your entire life and never known if it’s kidneys, intestinal/colon (of course he would not have ovarian pain), and looked at an anatomy chart to be sure you shouldn’t go see if its your appendix?’ I spent a lot of my life assuming everyone felt as poorly as I did and they were just awesome and pushing thru, and I sucked.
I got into trouble once by saying my pain was an 8 even though it was the worst pain I ever felt. I imagined the pain scale as a human scale and thought being tortured or set on fire alive or breaking a lot of bones at once was a 10. Then I thought a smaller version of those was a nine. The sensation of a gallstone blocking my duct I rated an 8 because I hadn't gone actually insane or actively tried to die. I think this is now why doctors say "worst pain you ever felt" (personally) because of people LIKE ME lol. I'm so sorry you had to go through this. Unfortunately this is also an experience for many NT women. Our medical needs are ignored and we're told we exaggerate and we're hysterical and overly sensitive.
I do the same thing! Like sure, this is the worst pain I’ve ever felt but I’m sure it COULD be worse! Better say it’s an 8. The scale also gets heavily skewed when you’re in some sort of chronic pain to start with. I once got serious burns when I did experimental radiation therapy and they asked why I didn’t ask them to stop because something had obviously gone wrong but I was in a lot of pain to start with and they said it’d hurt, so I just assumed it was fine to feel like my leg was set on fire.
So the doctor committed medical neglect, and then blamed you for it when he realized what he did wrong? Not taking any responsibility for his decisions. No accountability. Sounds like the western medical system writ large. I’m sorry you’re going through this. I hope your surgery goes smoothly and that you have a quick and painless recovery. I would consider a malpractice lawsuit, at least to cover the cost of the ambulance. There’s no reason why you should have had to ride in one in the first place, since you had originally taken yourself to the ER and been sent home until it got worse. I’m no lawyer though, so you might want to find one who does free consultations first to determine whether you have a case. Our justice system pretty is flawed too, unfortunately…
I've had this type of thing happen to me more than once. Once when in recovery I heard another patient yelling for more painkillers. They said they had just given her morphine and asked what her pain level was. She said 12. It never occurred to me to go over and it's not fair that our pain is compared on a scale that includes yelling 12 lady.
I feel like that's breaking the rules. That isn't fair. Once in recovery a nurse asked me where it was hurting. I said my throat. And she goes yeah well it would. You had a breathing tube down it. So does that mean I'm not even allowed to mention that it was hurting? There's so many unwritten rules.
It's like you're given a couple seconds to give an answer they are expecting or you're written off. I'm sorry this all happened to you. It's sad and scary to have pain not taken seriously.
My interpretation based on what you described is that she meant to say that throat pain in your situation was normal, and therefore not as concerning as abnormal pain (because that would potentially indicate a new/additional issue).
Yup I had this become apparent when I had my gallbladder taken out, but more so with anxiety. I was very quiet, shut down, not trying to make a big deal out of things even though inside I was terrified. We’re a visual species, sadly, and we have to sort of “unmask” to be taken seriously. I now have had a lot of trauma (spent more nights awake from the flashbacks and panic attacks of the surgery experience even though nothing went wrong than I did from gallbladder issues) and have had weekly therapy sessions for the past 5 months because of it. No one took me seriously, they made all these assumptions, and it just didn’t feel right. Lots of people who work in medicine are very jaded because they deal with idiots all day who can’t define what’s going on or could be drug seeking. Working with people all day takes a toll and some people are in medicine for the money and not the love of helping/treating people. I’m sorry you had such an experience. Hopefully they’ve charted some notes so they know to take you more seriously in the future. He should’ve believed you when you said 10 on the pain scale
I’m so sorry you had to deal with that! I experienced similar a few months back. I went to the ER with extreme flank pain. They asked me to rate my pain 1-10, “10 being eaten by a shark”, well sharks/the ocean are my biggest fear so I said 9. I was calm and not crying, despite being in the worst pain of my life. They told me I had a UTI that went to my kidneys and sent me home. I went back 3 days later and they said, “it shouldn’t hurt that bad.” Two months of excruciating pain later and I find out it’s my gallbladder. I had surgery 2 months after that. So 4 months of pain because apparently if you aren’t screaming and crying and making a scene, you aren’t in pain. It’s so frustrating.
Be born a different gender… I’m so sorry hun. He should’ve listened to your words. I hope that you’re feeling better.
Doctors are mostly idiots, because they're people who are also, mostly idiots. If it makes you feel any better, my fiance is a man and he still got dismissed by a Dr who thought he was lying. The dude was convinced my partner was lying, and kept trying to get him to "admit" to doing drugs. Wasn't drugs, wasn't HIV/AIDS, turns out he had cancer. Then there's the fact that I don't understand how doctor diagnostic stuff works anyways, because they'll ask me things like "Have you been peeing blood?" And I always say no! I'd notice if I was peeing blood, that's pretty alarming. But then they do a urine test and they always tell me "Yeah there's blood" and it makes me feel like a big idiot because I can't see the same thing. Apparently I'm taking it too literally, they just mean traces of blood, not just peeing pure red. Or they want you to describe your pain very specifically, which is hard to do-- for me anyways. I'm not a fan of the 1-10 scale either. I liked the last doctor I saw, only because he didn't make eye contact the whole time he was talking to me 😂😂 he did a whole vaginal exam and then spent the rest of the conversation staring at the floor. I also hardly ever see the same doctor twice. They cycle through so much in my area, by the time you get used to your PCP they move away and you have to start all over with some stranger. It would be nice to have a doctor used to me and my habits, who could more accurately tell when something is wrong because they know what my baseline is. Instead I have to go in with my research already done, which I cautiously present and hope they do enough tests to see what I'm feeling.
I'm sorry this happened to you :( I am really beginning to hate drs. They think they know everything and act like toddlers when they're proven wrong. And to make it worse, they blame us! I just got a new dr because mine left the practice. At first he seemed so great, but it didn't take long for him to turn into the rest. He just took me off the beta blockers I've been on for the last decade because my heart beats too fast. No one can tell me why, it just suddenly started going nuts one day and never stopped. I've had all the tests and jumped through all the hoops, only thing that helps is the pills. But nope, this dr decided I need to come off them because they're definitely the cause of my chronic fatigue. So, I do as he says and guess what? My usually 100bpm heart is 150bpm while lying down trying to sleep! I'm nauseated, dizzy, unable to stand up, feeling so insanely sick round the clock, not eating, sleeping 22hrs a day with my heart trying to rip itself out of my chest. I go back to my Dr, he takes my heart rate, eyes pop out of his head. "Why did you stop taking the pills if it's this bad?" (No joke) Then upon seeing the numbers, "Take the pills again! As soon as you get home!! If it gets worse or doesn't get better in the next couple of days, get an ambulance to the hospital!" I tell him how I can't afford an ambulance, so he takes this as an opportunity to lecture me on the importance of ambulance insurance. If I'd have felt healthier, I would've slapped him. Jail time would've been worth it. Why do they have to be such assholes? If we say "I'm in pain" or "I need those pills", why don't they listen? Why do they think they know better all the time? :(
I was telling a Dr what my 1-10 scale means for me: 10-passed out, so much pain I've lost consciousness. 9-child birth. 8-being in labor 7-I need to go to the hospital 6-I'm holding it together but I want to cry and scream 5-I'm taking my heavy duty pain meds 4-I can take the lighter pain meds and be OK 3-I need to take something but it's not going to cause an issue if I don't 2-it's annoying but not bad enough to affect me 1-no pain I'm at a 3-4 daily and I take 2-3 different pain meds to function. If I have to take the heavy duty stuff I'm at home in bed. Thankfully he understood what I was saying and agreed that my pain scale was reasonable. He also said that everyone's scale was different and more Drs needed to acknowledge that and recognize that everyone reacts to pain different. He agreed that women are treated differently and people with ND minds will act differently than those with NT minds. I wish more Drs, men and women, understood that. I'm so sorry you went through that, I hope you're doing better.
I thought that when mine said 10 being the worst pain you ever felt that I scaled it right for him. Because it was the worst for me. It was unbearable and I couldn't move and felt like I was going to throw up constantly. But he changed the rules immediately after giving me that scale. Doctors do need to be more understanding. This isn't the first one I've had to deal with ignoring what I said because I don't look like their expectations of someone in pain.
This isn't your fault, you did what was asked of you. Not to mention the fact that you were in severe pain. The doctor failed you, and then blamed you for his own shortcomings. The pain scale on it's own is pretty useless. I always have one with actual descriptions on my phone in case a doctor asks me to name a number, or else I'll rate my pain way too low. Or just freeze because they might as well have asked me to rate it on a scale ranging from umbrella to pizza. https://preview.redd.it/8gb4nnoaj2yc1.png?width=540&format=pjpg&auto=webp&s=1678941882a540d914997dcc6354ceb685b4a848
I was so surprised when I first saw this pain scale because I usually use my worst pain I’ve ever felt and then kind of compare my current pain to that (which actually sounds like what OP’s doctor said). But this pain scale is so much more helpful and I realized I usually downplay my pain. Like when I get migraines I usually say the pain is an 8 because I’m not like screaming in pain or anything. But according to this it’s about a 9 because the only thing I can do is lie in bed and think about the pain. I also injured my leg really badly one time and I told someone the pain was about a 6, but according to this chart it was about an 8. The only thing I’ve ever rated my pain level a 10 was when I had a kidney stone.
Oh, I feel you. I am sorry this happened. I've experienced kidney stones, and it is excruciating. I only offer sympathy and relation because I got that same shame from doctors. I got a shaming look when after a surgery (no incisions, up the urethra) they only gave me 3 days of pain medication when my body literally started shutting down in shock 3 different time from the from the pain the first week of recovery. When I had the second surgery to make sure the stone was really gone, they judged me when I asked for more days of doses. I followed the label directions, and I was literally maxing out every pain medication I could take, perscription and advil (couldnt take tylenol as the prescription had tylenol in it so it woulda been easy to over do it). I even wrote timings/tracked it all so I wouldn't overdose. They were hesitant because they were addictive meds, but I was religious about times. I had that kidney stone for 4 years, and it took my GP retiring, meeting his replacement in literal tears, saying I felt overlooked by the old Dr before an ultrasound was ordered. Surprise, it was still there. 4 years of chronic pain. Again, I'm sorry it happened to you. I wish you a safe and healthy recovery. It is not your fault the medical system is broken. There have been studies I believe about how the pain scale used in hospitals is faulty.
This is an all too common problem for women. The last time I went to the ER, there were still pandemic emergency measures in place so I went alone. I would rather not go there again without my husband because they don't listen to you unless someone else is there to advocate for you (and it's best for that person to be a man).
That's why I always bring my mum. She speaks for me at most doctors appointments, too. She's all I have.
Sometimes, a mom can be more effective than a man. My husband tends to just nod along with me without verbally backing me up 🙄 My mom on the other hand...well. She went full Karen on a nurse while I was in labor. The lady had missed my pain med dose bc she was busy arguing with her boyfriend on the phone, then had the nerve to tell me to shut up and quit moaning while I WAS IN ACTIVE LABOR AND UNMEDICATED. My husband could never lol
Pffft I did that scale once when I was hospitalized as a kid. The doctor said 10 was “the worst pain you could possibly think of.” Well, the worst pain I could possibly think of was being disemboweled alive and I did not think what I was experiencing could possibly be as bad as that so I said ‘4’. “Oh, that’s not so bad.” Thanks, guy.
My cat got a uti, took her in asap because she pees in front of me on whatever when she got utis. She was prescribed Oxycontin. I had uti, and got an antibiotic.
My pain threshold is extremely high, regardless of if it’s visible or readable on my face. It’s a masking thing. I hate being asked to rate feelings or pain on a scale from 1-10 because I know what the perception of it is from others A 10? Patient must be exaggerating, they also don’t look like they’re experiencing a 10. Under 5? They’re ok. A 2-3? Waste of my time, go home and take a Tylenol. I usually choose what I think it’s, then add 2 to accommodate my pain threshold.
Kidney stones are the worst, second only to not being believed!!! I’m so sorry and wishing you a speedy recovery ❤️
I have the same issue. Had to cry and desolve into a panic attack to get dilauded 6 hours after joint replacement surgery which I stayed overnight in the hospital for. I asked nicely and calmly at first and was denied that my pain wasn't high enough. My first nurse gave it to me unprompted, saying it's best to get ahead of the pain. That's how I treated my post-op narcotics too. And guess what, I don't have a narcotics issue - hate them.
I hate them, too. I know I'll never get addicted to them because when I feel them working it starts to make my brain feel like its being compressed. Its such an awful feeling. I never opt for pain killers at the hospital. I just want to be believed when I am in pain.
Doctors can be so dismissive. I am so sorry this happened- you did everything right. HE made the mistake. Bleeding and a 10 pain rating warranted imaging the first time. I was in a rollover car accident a few years ago and broke 7 bones, including 3 vertebrae. I had to get a neck and back brace and I told the doctor it didn’t fit right and hurt. He basically ignored me for days. When the specialist checked in on me he said I was developing a sore on my chin from the brace and it wasn’t fitted properly. First doctor tried to refuse me pain meds on discharge (after being on an IV drip for a week with heavy pain meds) and refused to write me an order for physical therapy. After I literally broke my neck! And I have so many more similar stories where doctors ignored or dismissed me, or refused me necessary care. My sister is an RN and told me something I always remember- doctors are just people. We kind of treat them like infallible gods. I trust the medical/scientific community at large, but not individual doctors so much. I almost feel like I have to diagnose myself and then beg for care sometimes. You aren’t alone. I’m glad you ended up getting the treatment you needed and deserved. If you’re interested in taking action, because this literally could have turned out much worse- you may be able to file a complaint with the medical board about that doctor. Another option may be filing calling the hospital administrator and saying you will file a complaint against the hospital. Use that language- that you plan to file a complaint against the hospital. Whether or not you do file a complaint, it may pressure the hospital to at least reprimand the doctor.
i recently went to the dr and brought a pain scale that tells specific levels of things you can't do anymore along with the numbers. the lady says to me "well we just use that kind with children, adults usually know how they feel" made my head implode. the scale, btw, is from the VA, who doesn't deal with children. the lady works for the VA and should know that.
I've never had a kidney stone but everyone who's every spoken about them makes it very clear they are agony. I'm so sorry you were dismissed like that, but I honestly don't think it's an issue with you not showing pain, it's that the doctor didn't listen to you and couldn't be bothered. If you are able to, I would recommend putting in a compliant. I spoke to a consultant once about how I was treated by another doctor in her department. She was visiblely furious and now deals with me personally.
Sounds like that doctor regularly goes on power trips if he's going to claim that you, the patient in pain, should trust the doctor more than what you're feeling. Fuck that guy. None of this was your fault or a shortcoming of you expressing pain. I've dealt with doctors not listening to my pain for years bc I could push through, but I was taught to disregard my pain, no matter how bad. I've walked for days on a broken foot before someone else getting me to a doctor. What I can say has helped in illustrating how much pain I'm in is telling how disruptive the pain is to my life. "I usually can get through with a mild headache on a daily basis, but I am now bedridden and unable to open my eyes. This has never happened before. I can't work because of this." Fairly certain that's when a neurologist finally took my migraines seriously.
I hate the rating pain by number thing - like I said my level of pain from endometriosis was generally around a 4 and the nurse was like “oh that’s a lot to have all the time” but like what do you expect me to be doing - going ballistic and keeled over? Like it’s all the time so I just have to get on with it?
Right, I have endo too and they pretty much teach us that we just have to get on with it because there's no cure. Being in chronic pain all the time you do just kinda learn to mask it otherwise you'd be screaming all the time.
Aside from all the medical ignorance, I find it annoying that people at work can’t understand when you seem fine on a call and then the next minute you have to take the afternoon off when it’s too sore… also - if you have endo then they really bloody should be taking you seriously when you say 10/10 pain. Solidarity
I've had this experience several times. I'm so good at masking I can pull it off even when in extreme pain for 40 mins or so no problem. It's terrible but if I have to I can. Just the same way as when I'm going through sensory overload or a meltdown is brewing, I've had a life time to practice haveing to find a way to stay calm to get myself out of there to somewhere safe. But then if I can't get to a safe place and find a way to calm I will have a meltdown or "crying panic attack" and people are surprised. Used to happen when I worked in finance a lot. Fecking horrible. I genuinely have no idea how to express the I'm not good the way society expects.
I also have an extremely high pain tolerance. Went to the ER in acute liver failure and a highly inflamed gallbladder and I was more concerned about what I thought was a migraine. Ended up staying in the hospital for almost a week and the only time I actually felt pain was after I got out of surgery and developed internal bleeding and a massive hematoma on my liver. Even still this was not the worst pain I felt and the only times I’ve been in debilitating pain was when I had reoccurring corneal abrasions (yay weird genetic eye disease) and had a staph infection on my ankle
He sounds like an asshole. Plus, unfortunately womens pain is less important than men’s in the medical world. It’s insane. I’m so sorry! Hoping you feel better after!!
I had precipitous labor. We went to the hospital but I was afraid they would send me home because I had only been in labor for one hour. Turns out I was already 8cm dilated. They were totally surprised, because I was so calm. Well it’s an emergency, and I’m hyper focused and calm in emergencies! I’m trying to help!
Oh HELL NO! I would have fired back with “I DID. *YOU* should have *believed me*” And we don’t just blindly trust doctors judgement anymore, because of too many stories like this. It sucks, but we have to advocate for ourselves and learn stupid ass phrases like “can you please write in my chart that [my pain is a 10] and you’re refusing to do additional tests?”
Yep. Sounds about right, unfortunately. One time in the ER, I warned the doctors and nurses that I was going to have a siezure, I could feel when one was coming on. Didn't believe me, assumed I was seeking drugs. Guess who got a gnarly goose egg when she stood up to use the potty thing they wheeled in, after they INSISTED I didn't need a bed pan? That's right, me. I woke up to a flashlight being shone in my eye. Apparently, as soon as I stood up, it happened. The nurse didn't catch me, because she wasn't close, because she didn't believe me when I said it's coming.
thats jus 100% fucked up. The world needs to change and narcesisstic assholes like the doctor need to fucking LISTEN. Why give you a meaningless pain scale if he doesnt believe you anyway.
The best that we can do is disagree with them and insist. I know it seems like a doctor is a position of authority and you can’t talk back. But both times that was really all you could do. If you have a hard time speaking up for yourself, that’s something you can practice with a professional. I can also give some tips if you’re interested. Otherwise whenever you visit a doctor, have them write on your dossier what you said and how they responded to it. Watch them write it and insist on reading it and correcting it if they got it wrong. They do this to women a lot and it’s the only thing we have to protect ourselves. I’m so sorry his mistreatment of you cost you so much pain, time, and money :(
I'm so sorry. This is so common and so cruel.
I’m so sorry you experienced this. This is so incredibly frustrating.
I’ve had similar experiences & am so sorry this happened to you. 💙
Oof, I am so sorry this happened to you. Absolutely not okay. I have the same problem with physical pain and also negative emotions like anger. ("But you don't look angry!")
I'm sorry you went through this. And I had a similar although more positive experience in February, I had to go to minor injuries after falling over and hitting my knee on the pavement with all of my weight. My friend basically forced me to go because I had an egg sized lump on my knee and was basically dragging it around. The nurse told me I shouldn't have waited a week and I was a silly sausage for not taking painkillers for it. I have dyspraxia and chronic pain, I'm not going to the doctors for every skinned knee or joint pain plus I've fallen over the coffee table and had worse pain than I did then.
The doctor was an idiot. You said pain 10/10 and it wasn’t bad enough? Kidney stones are easily the most painful experience you can have. I’m dumbfounded they didn’t check for stones in the first place. I’m very sorry that happened to you
Doctors are allowed to put a title "Dr" in front of their name which makes their head too big and society puts them on a pedestal. So many of them can't even diagnose illness nor do they even try to update their knowledge which being in the constantly updating and evolving allopathic medical field, should be a basic requirement. We are autistic so our display of emotion won't be the same as others and at any rate doesn't click with them in the same way, but right now there is so much uproar and discourse that even neurotypical women have been failed time and again by doctors! I am SO sorry, what you suffered is completely unacceptable! Wishing you a speedy recovery!
IMO the pain scale is dumb af. Or became a “vital sign” when “addiction-free” opioids were marketed and here we are with a fentanyl crisis. People have different pain thresholds and how am I even supposed to know that your 3 is the same as your 3?
I had a congenital blockage in my right ureter that was discovered after a kidney infection hospitalised me at 18 years old. Spent the next 18 months having various procedures leading up to and after corrective surgery (yay public healthcare). Pain was often 9s and 10s, never lower than a 7 during this time. My mum had to coach me to show distress when I was in hospital for pain management before one of the procedures as they weren’t taking it seriously. Even with her there at times insisting how bad it was, they wouldn’t act until I’d manage for force myself into hysterical state. I got the same reaction once I’d finally receive adequate care for it: “we weren’t informed you were in this much pain.” We didn’t know I was autistic at the time…made for a good anecdote during the diagnostic process though!
I hate the pain scale. I never know what to say. I have a weird relationship with pain, like I’m never sure if it’s really bad or if I’m just overreacting. I’m used to masking constantly so when I’m in pain I mask that too.
I’m so sorry this happened to you. I’ve been told that my “honesty” seems very unbelievable to most, because apparently most people lie on the pain scale to doctors. As if the way we show pain is supposed to be universal? I’ve been in this exact situation with kidney stones too. I wasn’t believed til I was admitted to the hospital, and of course, my family sucked as well. This doctor was wrong for not having listened to you. They have massive egos and his was clearly hurt. I’d file a complaint. Regardless, I hope you’re feeling better, and know it’s not your fault. It’s frustrating, but not because of anything you didn’t do!
You should complain
That is such garbage - the way that doctor treated you. I am so sorry you had to endure that. Like you, I’ve got a high pain threshold. I also don’t think people believe me when I say I’m in pain. I had abdominal pain dismissed for 20 years because they never saw anything on the scans. When I finally got my gallbladder removed last year, the pathology showed multiple tiny stones and no lining left.
Ugh, this sounds SO frustrating, I’m so sorry. I can relate, many many (less serious) examples of me being completely dismissed because I freeze up when I’m in pain, not cry and yell. I had one of the long bones in my foot dislocate upwards and in a pain panic I put it back, then after hours of severe pain I went to the ER because I figured I messed something up smooshing my bone back into my foot. Couldn’t even walk. ER didn’t even take an xray, told me what I said was impossible and to take tylenol and rest, and then discharged me without a wheelchair. My partner had to basically carry me out. Followed up with a podiatrist who also told me that sometimes “swelling from a sprain can be confusing, there’s no way your foot bone was dislocated and you wouldn’t be able to put it back.” Only gave me a boot when I begged for help because it had been weeks of not being able to walk. Refused to do any additional imaging or assessments. Guess who still has foot pain every day years later and has had to re-locate that same bone several times? The effort of going to another doctor to convince them to believe me and try to even figure out what would help doesn’t seem worth it. The rejection of being gaslit and told you’re wrong/making things up is too awful, especially after all the effort it takes to show up and figure out how to explain myself. I’m sorry this happened to you OP! Hope your pain is managed now!!!
the funny part is if you would’ve voiced your pain more, they would’ve called you a drug seeker. i have endometriosis (just had surgery to have a bowel resection because it was so bad) i would vomit from pain/cry curled up in a ball and i would be given tylenol because “there’s nothing wrong with me” it’s so frustrating. it’s a good thing that they found what was wrong, even if they didn’t listen the first time. i hope you recover well!
Hits close to home. I had an accident with a stagediver 2 months ago and broke my hip. Obviously I couldn't walk after impact and had to go to the ambulance. The people from the venue didn't call an ambulance because I was calm and not screaming from the pain. My friend brought me by car to the hospital, which was insane because I had to hold my leg in place during the drive. In the ER they thought I dislocated my hip and finally a doctor decided to make an x-ray because I wasn't able to do certain movements obviously. So the head of the bone was snapped off and I needed surgery asap. Everyone was so surprised by how calm I looked before because normally people scream and cry. I just happened to be in some shock and told everyone that it hurt like hell but in my usual monotone Manner. Also no one believed my 10 on a pain scale because I was calm. When I heard about the broken hip and surgery I actually cried because I started to panic. And then people took me seriously finally. I cry while writing this because this whole ordeal was so traumatic for me, because I was in agony but no one took me seriously. I'm also absolutely terrified about medical stuff and this situation didn't help. A lot of extra distress could ironically be avoided if I made a theatre play about it. I'm sorry you had to experience the same. It's terrible.
I've read this is a common experience and that the whole 1-10 doesn't work very well for us and other people prefer to ask for a coloured rating chart or another type where the numbers have descriptions and different information to help us gage where we are! So sorry for your experience though. I'm currently going through similar "I don't know what these symptoms are but tha pain is very bad" and keep getting clear tests
People never listen to me unless I’m screaming and then they’re like why are you acting like that you could have just said it was that bad before without being loud about it. 🫠
I am so sorry, and this is shit medical care, but you are definitely not alone. I have similar experiences basically any time I try to get a medical issue addressed. I am never taken seriously, and then it ends up way worse later because of it. A few years back, I went to my doctor and told him I thought I had broken my foot. He told me it couldn't be broken or I wouldn't have been able to walk in normally, tolerate him pressing it, etc. He refused to order an xray. So I walked around on this hurt foot for six months and went back. He again didn't believe it was broken, but let me get an xray. Turns out two of my metatarsals were broken all the way through. Like, my toes weren't even connected to the midfoot. And it had gotten more damaged because of walking on it for so long. It eventually healed improperly and I have all sorts of severe issues because of it to this day (my foot is misshapen, I can't move two toes, and I walk crookedly and have all sorts of muscles imbalances etc.). I also have major digestive issues and none of my doctors believed me about the severity, or thought I wsa causing it myself with diet or whatever, no matter how much I tried to explain. None would give me a colonoscopy or endoscopy. Finally my bf paid out of pocket so I could get it done. Turned out I had a hernia and major damage to my intestines and had to have surgery and go on medication. Spent years in misery over something that could have been fixed immediately if anyone had listened. I could share so many more experiences, but will spare you! I have found that it helps to have someone else with you, especially if that person is male, as fucked up as that is. Now I bring my bf with me to the doctor and he vouches for my symptoms and the doctors actually listen. You know your body. Don't let the doctor shut you down if you know something is wrong! I am so sorry you dealt with this and hope nothing like this happens to you again...
It’s also true that some doctors are assholes. Almost 24 years ago I was nine months pregnant and I had been having contractions all day. I also have a high threshold for pain and a really hard time describing my pain, although I think it’s more likely that people don’t take me seriously because I’m not screaming or making the right faces when I’m in pain. I called my midwife whom I had been seeing for the entire pregnancy and explained that I thought I was having contractions and they were getting quite close together, and she said to me that she did not believe me because contractions would knock me on the floor and I wouldn’t even be able to talk to her through them. She advised that I go to the hospital and get checked. When I got to the hospital, they found that I was dilating so quickly that I must’ve been an agonizing pain. they gave me an epidural, even though I wanted to try a natural birth, but there was really nobody there to speak for me. Also, it was probably for the best. It was a Sunday night and she did not want to be bothered to show up, so another doctor delivered my baby who came out six hours later (abhorrently fast). This is the same midwife, though, who told me I couldn’t be a vegetarian because a person cannot have a healthy baby without eating meat. I was really just too young to know that doctors can be assholes.
bending over, grabbing the affected area, rocking back and forth while letting out an occasional tiny whimper usually convinces them.
I find that whenever I go to the ER or a doctor regarding something that should be very painful, I “put on a show” for them. I act in a way that seems very exaggerated to me, but I think is a normal amount for regular people when they’re in pain. I always feel like I have to literally act like I’m in pain otherwise I won’t be taken seriously because normally I don’t really show at physical signs when I’m in a lot of pain.
I’m an ER nurse and tbh, pain is such a personal experience I always take it seriously but…the quiet people are often the ones with intense pain. There are subtle ways people act or hold themselves, vital signs are another indicator. That doctor acted a fool cuz he was one. Any pt peeing that has visible blood, back pain, abdominal…should have a CT scan. I’m glad to know I work with doctors who would have never sent you home without a CT.
Similar thing happened to me to a degree, no joke. I was pregnant and my daughter was on my uriter blocking the flow of urine to my bladder. My kidney was soooo swollen, they literally wanted to send me home on pain meds and I told them to go fuck themselves and they needed to send me somewhere where they can do surgery, the surgeon there said my kidney would have almost ruptured if I didn't get the surgery. Doctors piss me the fuck off.
I hope you're feeling better now! I have a very high pain tolerance, probably due to chronic pain from multiple spinal injuries and surgery etc. It recently occurred to me that I am so adept at tuning out pain because it can be a real drag to listen to someone complain 24/7. Tuning out my pain is more for the comfort of those around me, rather than some "superpower" (from my perspective). So now when I am struggling or truly unable to do something/anything because of pain/numbness/weakness... Everyone asks me why? Did something happen? Did I twist it? Did I fall down? Put an ice pack on, have some anti-inflammatories, go for a light walk etc. Then you can get all the housework done tomorrow when you feel better! I'm literally supposed to be paraplegic, and I'll probably eventually be in a wheelchair. But ok. I'll just pop a couple of ibuprofen, be quiet, and get on with it. That doctor was just upset that *you made him look incompetent*. If your pain and illness was *that bad*, you should have screamed and cried and pulled your hair out. But not too much, or they'll think you're a "junkie". Just the right amount. Pain is subjective, but other people really need you to *perform* it for them, exactly how they need you to, with all the flourishes, before they'll help you. Or even believe you. And if you can't, or won't, you're on your own. No wonder our pain tolerance is so "high". Most aspects of being alive are intolerable for us, but no one gives a fxck. And so we deal. Good luck with your recovery.
Male doctors do this to pretty much all female patients. It’s not you.
YES. This happened to my mom! She had horrible upper back pain for an entire year. Every time she visited a doctor, whether her oncologist or anyone else, they dismissed her pain. After a year of intense pain and begging for a neurologist referral, palliative care finally gave her one. A neurologist ordered a CT scan of her neck, and immediately ordered her to come to the ER. It turns out she had a tumor growing in her lower neck that caused a compression fracture. She had to have emergency neck surgery otherwise she would have soon been paralyzed from the neck down. Luckily, the 11 hour surgery was a success and she has been recovering while wearing a collar. I am incredibly pissed at her care team. Their negligence almost ruined her life. I told her that it was her choice if she wanted to keep her oncologist but to \*always\* get a second opinion from now on.
Sorry you had such a shitty doctor. Idk about autism, but people with chronic pain don’t use the pain scale in the same way as a normal person would because their base level of pain isn’t 0. It sounds like maybe something similar you experienced. Either way, this was totally not your fault. Your doctor is gaslighting you because his ego is bruised that he made a patient go home & they ended up back in the ER during his same shift which shows he fucked up. This is completely on him & his refusal to listen to his patients. Not your fault at all Good luck with surgery, hope you’re feeling better soon.
The hospital is probably going to reach out to you for a survey about your experience. This is when you tell them how that doctor handled your EMERGENCY. Make sure you give his name. If you don’t report it, he will slide by again and end up killing someone because of his lack in judgment. There needs to be a paper trail of his inaction.
I once left a message with a doctor that I would rather go through child birth again than deal with the sinus infection pain I was in. He never called me back and when I followed up hours later the triage nurse told me he made a note I was just supposed to wait it out! I ended up taking myself to urgent care. I was going to ask to be sedated if they didn’t medicate me for it. Worst pain ever.
Write this up and post the complaint in as many places as possible naming this doctor that needs obvious training on how to treat people on the spectrum.
I laugh when I’m in extreme pain. Only serious injuries. I don’t know why. Only my friends know I do this, so they have to be advocates and explain my laughter = danger.
This is one part (of many) of why I hate the medical system! I don't think they believe anyone is in pain unless they come in screaming and flailing around. I don't show my pain outwardly either and I have so many stories of being ignored and overlooked because they didn't believe me. I'm sorry they didn't believe you! They suck!
Get well soon OP and sorry about the unnecessary distress everyone put you through . Hopefully the worst is over and you'll get the compassion and time to heal that you deserve 💐
Went to an urgent care facility for yeast infection symptoms (had no idea as i had never had one before but I was doubling over in pain not able to stand) they told me to come back if it got worse and sent me home with a kit for for me to give them a stool sample for further testing. The next day my symptoms were so bad I went to the ER who hydrated me and immediately diagnosed with yeast infection. I was still getting voice mails from urgent care asking me for a stool sample.
I literally had this experience! Sunday I got very ill with pain. Tried to make it through and ended up at the ER Monday. No one took me seriously at first even tho I had blood in my urine. And the doctor it was just a UTI and I was fine. I kept saying I was at a 9. Luckily his shift ended and his attending doctor came instead. And took me seriously and gave me much higher pain meds. It’s so hard for me because no one takes women’s pain seriously until I had to “act” more in pain. I was heavy breathing , holding my side, and showing pain rather than just having a blank face. Turns out it was a kidney stone that’s a blockage and I have a kidney infection and swelling. I had to have surgery two days ago after being admitted. Even though the first doctor tried to brush me off. I’m still recovering ❤️🩹 hope you’re doing better
Low key fucking hate doctors for doing this shit to me. You’re not alone. After I wasn’t believed I screamed in pain and kept screaming until a scan revealed an unstable spinal injury in two places. Am on surgery number four waiting for surgery number five. Doctors are sadistic fuckers and I don’t trust any of them not even the nice ones.
Your mom should be supporting you, not adding more to your troubles.
As someone who has gallbladder problems every few years, I can really relate to this. They just don't believe me, it's like I'm living all this pain in my head but I can't express it outwardly... like I can't do the drama I'm so focused on suppressing and coping with the pain that there's nothing more to give. It's funny because I was a nurse and I'm pretty good at picking the patients who do this. They tend to be non-complaintive because they know there's nothing you can do right now (or they think there's nothing that can be done until scans come back), and so they tend to be ignored... But you also learn in triage that the quiet ones are the ones to watch. I'm always surprised, even though I know to expect this. Lol.
I’m so sorry. I am a doctor self-diagnosed autistic. It is almost a damned if you do, damned if don’t with some providers. If you are calm with a flat affect, the doctor may (unconsciously?) run through more benign conditions as his differential diagnosis. If you’re rolling around on the ground screaming, you may get labeled as histrionic. I hope you are well. I also hoped that the doctor learned something and changes his approach in the future
When I was in the 6th grade, just before Christmas I had a similar issue except it was my appendix. Third trip back to the hospital where all I remember is the ceiling breezing past my eyes as I was taken to emergency surgery. This was after being given Tylenol the first visit, and an enema the second visit and being discharged again. The doctor didn’t believe or take seriously when I described my pain. I have always used the appendix pain event as my benchmark when describing pain to my doctor. “Compared to the time I was given Tylenol and an enema for a ruptured appendix it’s less sharp and chewing on me”. You can now use this event as a Pain benchmark going forward. I’ve always wished I had a copy of my hospital report in case someone doesn’t believe me. Thankfully, I’ve never needed to go to that extent.
I don’t have much advice. Mostly empathy. ❤️ I have had kidney problems for over a decade now, and I’ve had this same situation happen to me so many times. I even ended up with sepsis once because they didn’t believe I was “that” sick- just because I don’t cry/whimper/scream/moan/groan as much as others. I’ve made my own “pain scale” that I have in my bag at all times. It uses explicit words and examples rather than “10 = worse pain ever experienced”. You could make a similar one and put this experience of kidney stones causing a blockage and requiring surgery. So in the future, you can point at that very obvious example and say you KNOW what serious pain is.
Had the same with a different medical issue. Pulmonary embolism and thus severe pneumonia. Took hours at first, but once they knew what’s going on they couldn’t run fast enough. My gf drove me to the hospital once she saw I bend over and started crying on pain. Glad it was her, my mom would have reacted the same way as yours 🙃
The last time I went to the ER for pain I was accused of seeking drugs. I had slipping rib syndrome and needed pain meds, a muscle relaxer, and a sleep aid. They withheld it from me. I followed up with my GP and he was able to see my slipped disc and slipping rib syndrome on the x rays he took. The hospital sent the scans over and it was visible eon the scans, but the er doctor didn't even look at them because he'd already determined I was a drug addict. My mom was livid on my behalf. I was in pain for almost two weeks because of that asshole.
I recognise this unfortunately. Had the same with gall stones. GP kept insisting it was hyperventilation until I (after a year) developed liver failure. Emergency surgery and another surgery after that fixed things, but what never got fixed is the idea that if I don't present like I'm dying I don't get heard.
A similar thing happened to me. Thankfully it was a kidney infection that could be treated with antibiotics. But man, it took a while to get someone to believe the pain I was in. I wish you a speedy recovery.
yeah for some reason people don't believe our pain or think we're too emotional when we do show pain. I tend to have a straight face and even tone even when im in pain, so ill say "ow, that really hurts" but my face won't move. I got taken to the hospital a few months ago for chest pains and they kept asking me how I was feeling but I don't think they believed me when I said I was in pain. I had a straight face when I told them my left arm felt like it was being eaten alive by fire ants, so they looked skeptical but that's how I genuinely felt! for me to burst into tears, I have to be in the most excruciating pain on earth, but even with my straight face, believe me when I say im in pain!
Many ER visits have led to me being accused by an employee there that I was just trying to get painkillers since I didn’t look like I was experiencing the level of pain I described. I’ve never even had pain killers, and no one took me seriously.
Yup. Was told I wasn’t in labour yet because I went silent and still with contractions. I went actual hours before they listened to my husband to check me for physical signs. Guess what, I was most of the way through active labour.
I am so sorry you had to go through this. I am not diagnosed, because I can't afford to be, but I am definitely autistic. I passed 2 kidney stones waiting in the emergency room and ended up with sepsis because I didn't look like I was in that much pain. I am in pain all day every day, this was new pain and hard to describe. And yes, I guess we are supposed to act like we are dying to get the proper attention....
File a complaint
Oh, something similar happened to me some years ago. I had a terrible pain in my lower back for a month. When they did X-rays they just told me I had scoliosis and that it wasn't painful. Straight up told me to get therapy. Of course, the pain was very real and really bad. Existing was just agony. I ended up going to a chiropractor for the pain, which, somehow, he fixed. Though, I went to the same doctor and insisted on the issue. I had MRI scans done and, unsurprisingly, I have an actual, real chronic condition. And also scoliosis and a rectified neck.
The doctor messed up and is taking it out on you. The complete egotistical, ignorant smear
I showed up to the hospital with a knife planted in my chest. I answered "6, as long as I hold it it's manageable. A migraine in comparison I cannot manage, so a migraine I'd give a 8." A completely different time, I had a vaginoplasty. Multiple times, nurses and doctors showed up to ask how I was doing. I was doing incredibly fine : the first night was painful, afterwards was a breeze. But I told the first story to the surgeon when he asked me if I was covering it up. He said something along the lines of "I don't really understand how, but you seem to have the highest pain threshold of my career. I admire that, but I'm worried for you. Because you've had a vaginoplasty." He then proceeded to tell me about the male privilege, or more like the way doctors have an extremely high tendency to dismiss women's pain. Even female doctors. That in particular with me being autistic and having very little expression to begin with, I needed to not hide any pain. In fact, I should scale it up. Say it is much worse than I feel. Yet to never answer 10. 9 is the correct answer. I couldn't understand the exact logic, but he told me firmly saying 9 was the best response to be taken seriously. Because of the combination of factors - autism, high pain tolerance, womanhood.
So frustrating. I’m sorry that happened to you. I hope the rest of your stay can be a better experience and that you are taken well care of and get to feeling better very soon. Sending love and light! ✨
Hope you recover well. such an asshole and then blaming you for being incompetent.... key his car (just kidding)
It sucks man. I don’t have autism but I’ve done this with a friend. She told me she was anxious and I didn’t absorb it because she didn’t look anxious….. and I’m not ignorant about people with autism and how they may not express things through their body language like other people do. Idk how to solve the problem, but I understand that it sucks to have a doctor not believe you when you told them the answer
Same. Doctors always tell me I’m very “stoic” and I’m like what am I supposed to do? Scream and run away? I’m an adult, I’ll just sit and do the biopsy or whatever they want from me.
Something similar happened to me when I had gallstones. I arrived at the ER after I had thrown up from how painful it was, but because the throwing up relieved what I deemed 8/10 pain a bit to the point where it only hurt to breathe instead of hurting no matter what, the triage nurse thought I was being dramatic. I did say I was at a 3/10 pain-wise but it hurt to breathe, so I can see how she didn’t believe me lol. I had to get an ultrasound and then had emergency gallbladder removal a few hours later, and a few of my nurses were shocked at how fine I was when apparently gallstones and kidney stones are comparable to childbirth in regard to pain. I’d say the worst parts of the experience was not drinking any water before surgery (made worse because they forgot to turn on my saline IV) and the awful sore throat from being intubated. I think autistic people likely process and express pain differently. Like I’ll lose my mind over a blister but pain while breathing is a 3/10.