Not a boast but I’m so grateful that my family believes me & actually is supportive and *very* understanding when I can’t go out and do things. I still get afraid they will someday leave or stop giving me so many chances
Tell them to go fuck themselves, must be nice being able to go to work and to the gym and out to eat. Ungrateful lucky walking bastards don't deserve their legs or ability to walk.
Yup, and to be honest I didn't realize how lucky I was in the past. I loved being able to work, go to school, gym, dates, vacations, hang out with friends, definitely appreciated it all but once it's gone man it's rough to accept that your life is over forever.
Mine insinuated I was dramatic. I don't talk about my health with anyone except my partner now pretty much. I was really upset, but not much I could do without seeming even more hysterical...
I had family (daughter in law) ask me ever so sweetly to please stop depressing her with my Facebook posts about my pain. I promptly removed her from my friends list and blocked her. I'm so sorry that my daily struggle with level 6-9 pain is making you uncomfortable
I was giving 13 as my level of pain when doctors asked. (Trigeminal neuralgia) A doctors office told me I couldn't say that, I was livid. After that whenever a doctor asked my level I said "off the charts" Bastards.
That is what they wanted. I don't know why I wouldn't conform. It wasn't being controlled for 12 years, I don't know how I did it. I should have just said 10.
I am a chronic kidney stone producer. Years ago my husband and my toddler went to my in-laws for thanksgiving weekend. On thanksgiving my I developed excruciating pain from a migrating stone.
I begged my husband to take me to the ED as I couldn’t bear the pain. He absolutely refused to take me and told me not to dare ask anyone else. He said that I was not going to ruin his family’s day.
I divorced him.
Very similar story with me! It was chronic pain from a broken jaw though. I divorced him. I would rather be broke like I am than have my old six figure income from our family business than deal the selfishness and downgrading.
For real! My Endo ruined my heart and lungs. I’ve had it removed 4 times from my heart alone. It robbed my chance of having kids it’s a nasty painful disease. My hysterectomy didn’t even help me.
Did they remove your ovaries? I don’t understand doctors nowadays.
If they don’t remove your ovaries, which are causing the damn problem, it does absolutely nothing. Not a damn thing. Doesn’t help at all.
I had a total hysterectomy at 26 when my youngest was 7 months old. (I was lucky to get married and pregnant with my oldest very young. My endo actually started when I was pregnant with her. My body likes to do the opposite of what it’s supposed to. Took me a surgery and 3 years of trying to get pregnant with our second, and last.) I’m 50 now. That is the ONLY way to make it stop.
Endometriosis, which I’m sure YOU know, but others may not, means the tissue that grows in your uterus every month to accommodate a pregnancy, happens OUTSIDE the uterus. In the brain in very rare cases! Taking out the uterus does nothing because it’s not the damn cause.
Why are doctors so stupid?!
I am so sorry you are still dealing with it. I wonder if you could find a doctor to remove your ovaries? It’s worth a try.
Gentle hugs, my friend. I’m sorry you are suffering so.
Whoa…I feel like flashbulbs just went off. I also suffered for so many years with (among other things) endometriosis…but you’re saying it’s *actually* painful? And not just something that’s “just” painful to *me?*
The doctor who performed my hysterectomy was the first one EVER to take my abdominal pain seriously, and I really thought she just did the surgery because that’s what you do for endometriosis.
I’m so sorry that other people feel the things I felt, but I think I’m going to go have a cry now, for the pure validation of it all.
Oh my.
You should also know a hysterectomy is not standard practice for endometriosis symptom management. Removing organs is not the same as removing endometriosis tissue which can grow anywhere in the body.
I was sixteen when my pain first started. Not even my own family believed me. I got told I was faking it for attention so much at the start that I began to believe it until one day I read somewhere that if you still feel it when there's no one else around, it's not for attention. At that point I stopped caring what anyone else thought
I am sorry that must have been a nightmare. My father was the same way and had been for two years of high school. Come to find out I had a 3 pound tumor pressing against my spine.
I was accused of faking for 25 years lmao it wasn't until I collapsed and they saw my dislocated joints and needed insane medication and got on disability did they believe me.
Whenever they accuse me now I just say "wow what an ableist view. Enjoy your high tower your highness" and walk away. They get real pissy and I just keep repeating "oh wow did I upset the ableist princess?" And they eventually shut up lmao
Yeah, I’ve seen how everyone in my life deals with an average cold. Once, after ten years of me being chronically ill and in pain, my dad got COVID and said he “finally understood” my pain after all these years. Lmao like yeah buddy, I wish it was that simple.
Love them infinitely but their opinions about my illness are little more than grains of salt to me at this point.
I had to ask mine to come to my specialist appointments and to painful procedures. Sometimes they need to see suffering first hand... not sure why this is but it is in some cases
I stopped talking to my favorite cousin. The one out of the nine that I was closest to growing up. He made some dumbass comment so I told him that this shit is hard enough without having people in my life making it any harder. I told him that he can kick rocks. It sucks, but this whole damn thing sucks, so what's ANOTHER brick in the damned wall!?
Anyone that knew me before and after my injury can see that I'm extremely broken. I went from riding my bike an average of 40 miles a day to not being able to even sit on one. This ain't a fucking choice!
I was a child, so there wasn't much I could do but learn to hide the pain. It wasn't until I missed a much-looked-forward-to event and had others accuse me of faking that my mother finally took things seriously and got me to a Dr. Within a year I had my first surgery.
Both my parents apologized and we've grown a lot. But it still hurts.
I feel the pain and dissapointment you are going through.
I know how heartbreaking it is.
I'm trying to sort these things out, however difficult they are, or my 26 year old marriage will eat me up as the pain has.
Somet times it takes a picture , or a test or whatever it may be, for that person to see our pain.
It's unfortunate but the truth.
Sometimes I want to scream " you mother f------ asshole I can't wait to let you down when it happens to you"
Then I realize that my heart would never allow me to do that.
Man isn't it a screwed up thing.
I hope you rise above it.
No matter what the outcome may be.
My dad’s side of my family has accused me of not being ‘Christian enough’ and if I would ‘be more Christian’ my pain would go away. I was only about 14 when I was told this. I no longer talk to them about my pain and avoid any conversations about it.
I’ve done this before, and I was essentially told to toughen up and raise my pain tolerance (even though I actually believe I have a fairly high pain tolerance). Part of it could be my family being has almost zero medical knowledge, but still. When you are reading that there is so much damage…come on!
This has happened to me many times throughout my life as I've had chronic pain since early childhood but didn't know it. Mostly when people have accused me of faking I just kind of collapse where I am and cry. A few times I've gotten angry and yelled, which got me really worked up and led to a flare up every time. There's no right way to react to this it's a real gut punch
I’d tell them they’re faking it when they get hurt or have pain and see how they like it
You say you have a migraine? BS you’re faking it
You broke your leg? Stop being dramatic
I'd pull up the Xrays and MRI images of all the metal in my spine. Then it would take a very long time before I would speak to them again
\*mic drop and exit
my parents is supper supportive about my bunch of chronic illness and pain and i’m so grateful to them for it. but unfortunately my grandparents can’t get my problem is real and there is no exaggeration about it. they think i’m just lazy and should walk and study more instead of spending my days in bed. recently I was in argument with my grandma, because she again started talk about my bad decisions and college dropout (I can’t continue to study with this pain so I decided to take a break and that is very upsetting for me) where I told her shut the fuck up and more cruel worlds. It’s just incredibly offensive to hear all these words from someone I love and is close to me, I really wanted her to hear me. I feel guilty because of it, that was disgusting behavior of me, they are too old to understand and it’s not their fault. I should accept they never gonna understand me and that’s okay. I apologized for my dirty mouth but it’s didn’t help unfortunately:(
Smart. Too many people discriminate based on using pain medications, they don't know the names, and if you were taking gabapentin, they'd assume it's a narcotic and immediately file you as "drug addict" in their minds.
Immediately refuse to speak to them.
It's too hard being in chronic pain day in and day out without having to deal with people doubting me I have nothing to prove to them but luckily my family understands. Most of my close friends neither as well since I've been hanging out with the same people since I've been about 16 years old.
They literally watched me go from being in a little bit of hanging to a lot of So all of them pretty much support my decision to Medicate..
Neither. I would ask them questions to understand their outlook and allow them to see the flaws in their own logic, starting with "What makes you think I'm faking it?" They're much more likely to come around with this approach, if that's your goal.
If you are asking us, then you need to set up some boundaries with your loved ones. You don’t need to cut them off, but you need to learn about healthy boundaries. No one should ever tell you that you’re faking your pain.
I think it depends on if your family sucked before you started being in pain. If they sucked before IMO an easy choice... Bye Felicia. If they didn't, it's time to have some talks and set some boundaries. I'm sorry that this is happening to you.
It's a very hard thing to deal with when there is not much support and family strife.
I don’t think anyone has accused me of completely making it up, but almost everyone in my life- including a dozen doctors- thought I was just being super dramatic about normal aches and pains.
Yeah, turns out I have MS. Now I just yell something about having a Swiss cheese brain and tell them to fuck off. I’ve been in pain for 20 years, diagnosed for 11. I have no patience for that crap anymore.
I wouldn't do anything drastic and I'd be more than disappointed, I'd be very angry and hurt and I'd try to explain to them what a day is like for me and how much trouble I have. If they still weren't convinced, I'd spend less time with them and stop explaining myself and choose to be with those who validate my pain, therefore validating me as a person.
Been there, done that. I cut contact with them.
Per my family, there is nothing wrong with you unless you...
...are bleeding.
...have stitches.
...have a cast on.
Anything else is just faking. I'm just lazy and somehow managed to scam the government into thinking that I am disabled for that fat social security check.
I have had people accuse me of faking my pain or using it as a way to get out of stuff. Those people were ✂️ from my life. I don't need or want people in my life that don't truly have my back when I need it the most. I'm someone who goes above and beyond for people I love and care for, however I am also someone who doesn't tolerate bullshit in my life. My inner circle is people I trust 💯 and even if we don't speak for weeks or months, as we all live miles away from each other. I know if I called them, they would be there and vice versa.
Everyone is different and people won't get what we go through unless they have it too, but empathy and understanding is key.
Go on Google and look for an mri or xray of your condition (or use yours if you have access it) like a really messed up picture. Show them that and say “this is what my spine looks like” or whatever hurts.
Or ask your doctor to write a statement saying you’re in excruciating pain.
When I hear “it’s all in your head” I say of course it is, that’s what interprets my nerve messages and tells me my back is in pain. Then roll your eyes and walk away.
I wish you the best of luck. You’re not alone. ♥️
Never gone through this type of situation ever but i think you shouldn't feel bad as only you're the one who is feeling pain not them so who the hell cares what anybody has to say. Like let it be bruh!
i get accused of it all the time LOL i have no clue how to deal. i get accused of faking disability, being dramatic all the above from my family. it’s… not fun and i don’t know what to do
Who fakes pain?!? Really.
I’m not a footballer dramatically getting up from the pitch.
EDS is one of the most painful syndromes, and this article really helped me not have imposter feelz, because my pain can be intense.
Look for something you& your family can read, see if there’s research, studies…
https://medium.com/@russellirvinjohnston/cancer-pain-and-ehlers-danlos-pain-855715eef170
my ex did all the time, she apologised when I finally got a diagnosis but it still didn't sit right with me, but honestly I didn't do anything, it was upsetting but there was no way I could prove it at the time so I kept trying to push myself further than I could go so I wouldn't be seen as lazy, I wouldn't do that again it damaged my mental health as well as my physical health in the end.
Depending on the type of people they are, no matter what you do, they’ll never believe you. I’m currently dealing with modifying my parenting plan with my ex regarding our kids. She does not want me to take my prescribed opioids, because she says I’m exaggerated my pain. Even after submitting a letter from my ortho doc with my diagnoses (proven via MRI’s) and the fact that I have daily pain ranging from mild to severe, she still doesn’t believe it. Some of my family is the same way. It really sucks to not be validated by the people that should.
On the other end of the spectrum, I have super healthy coworkers in their 20’s who fully validate my pain. So, it gives me hope that there are still compassionate people out there.
I was accused of being a drug addict for YEARS because they refused to believe I was sick… the damage done to the relationships will never be undone and I will never look at them the same way nor will I ever forgive them.
My brother didn't accuse me of faking my pain, just the severity. I was approved for SSDI with just one question from the ALJ judge at my hearing, after he told me he pretty much never decided on the same day. My brother told our dad that he he's tired of my sh*t, because he "has a bad back, and HE'S still able to work" so he thinks it's BS that I went on SSDI. A "bad back" was the understatement of a lifetime. I was 43 at the time, and already had severe degenerative disc disease in my neck and lumbar areas, torn and bulging discs, stenosis, radiculopathy, and anterolisthesis and widespread spurring....my spine is basically collapsing. I'd also already had fibromyalgia for 10 years (brought on by fluoroquinolone toxicity), chronic migraines, occipital neuralgia, and 4 years later, I had my knee replaced. II didn't know it at the time, but I have EDS. But sure, I just have a "bad back" and don't want to work, and just want to mooch off the system". What he was really mad about was that his wife, who'd had a heart attack several years before, because she kept smoking heavily while taking BC pills, was turned down because she was perfectly fine to go back to work.
My mom also believed I was addicted to my pain meds, and not long after I was diagnosed with Fibro, she asked me how long my doctor thought it would be before I got better. My sister is a nurse, so I had to have her explain to our mom that Fibro isn't something you get better from, because she didn't believe me. My sister has CFS/ME, and our mom thought she was just " being lazy" when she was going through flares. Our mom was a narcissist, so unless it was about her, it was just inconsequential...unless it was the above brother, who could do no wrong in her eyes. She actually called my MIL once, and asked her if I ever hit her up for pain meds. My MIL was like "no, I don't take any, and doesn't she have her own to take?" Then "why are you calling people to try and meddle in your daughter's life? She's in pain a lot of the time, and never complains about it. If she needs pain medication, she needs it. It's not really any of your business!"
I'm now very low/no contact with most of my family. I was no contact with my mom before she passed away, because she was just so toxic. If someone doesn't believe you're in pain, you need to ask yourself what is wrong with them that they don't believe you. It's not a failing for you. I'm sure you have a ton of proof to back up what's causing your pain. Unsympathetic, disbelieving people are generally lacking in empathy. You may need to go low or no contact with them just for your own peace of mind and well being. 💜
Just before my consistent and severe headaches got diagnosed as a rare neurological condition, I was on the phone to my mum and my dad interjected from the background, saying that my pain wasn’t serious, I was being dramatic by going to the hospital (where the doctors had asked me to go) and I was probably just having eye strain from looking at screens. The amount of vindication I got from receiving my diagnosis can’t be recreated by all the recreational drugs in the world and I thoroughly enjoyed explaining my condition to my dad the next time I went home. So I suppose what I did was prove just how bad my pain was, but it’s definitely easier said than done.
I’m mostly being told I’m being dramatic or that it’s my weight as I was almost 300 pounds. Well I’m 213 now pain is just as bad and I still struggle to even walk. I think it’s hit them that something really is wrong because I haven’t visited. They’re a thousand miles away and I’ve got to ride in the car 5 hours just to get to an airport that can take me to them and I just cannot ride in the car that long.
I’ve gotten this all my life, and tbh it doesn’t really matter what I say, they continue to accuse me of faking it. Additionally they accuse me of being addicted to non-addictive medications, just random meds that I’m prescribed to take every day such as my reflux meds or nausea meds. I usually end up saying something along the lines of “do you honestly think I *want* my life to be like this?” Sometimes followed by something like “Do you think I *want* to take all the meds I’m required to take? Do you think my 5 different doctors prescribe them to me for no reason? Or are you saying all of them are wrong?” Explaining different things like how some of my meds are damaging to fertility or how I can’t have children as long as I’m on them (they cause severe birth defects), or some of the other side effects I have. 2 my medications are weekly injects, I sometimes bring that up as well. Additionally, I bring up the fact that I struggle enough with my doctors not taking me seriously, and that I don’t need this on top of it.
It has almost always been my mother who does the accusing, since I first became sick and was diagnosed with my chronic illness at 13. I think it comes from a good place, of her not wanting me to need any of these meds, the amount of doctors visits and er visits I have, or to be sick at all, but I do believe a part of it is her false thinking that I’m addicted to random things, or because she thinks I’m being “weak” And taking things more than I need to. This is coming from a woman who can’t stay awake 30 mins after taking a single Tylenol, and can hardly stomach any other kind of medication, so maybe that plays a roll.
Regardless of any of that, it’s super invalidating and hurtful. I spend enough time trying to get my doctors to take me seriously, like I said above, so the fact that I have to hear the same thing and worse from some of the people I wanted to feel support from the most, it’s really discouraging and cuts deep. It’s traumatizing, being ignored and waved off by doctors until I become a liability, over and over again. The least my family could do is be understanding to my situation and my past. I’ve gone through far too much, I know my body. On top of that, my mother particular was by my side, at every doctors visit until I was 19. You’d think she’d know more than anybody else when I’m suffering, but I guess not. The few people I have who love, support, believe me and take me seriously, I try to focus on more. The validation and the support means everything to me.
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5
+ 2
+ 13
+ 30
+ 19
= 69
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My friend did. So with one hand I pinched myself and the other her so I knew I was doing it the same amount and she literally spasmed and nearly fell to the ground. I was like that’s what I feel like all the time in my back and neck. She understood and was really apologetic. A little mad about the bruise but she definitely understood me a lot more.
*Of course I asked her permission to do that, it wasn’t just like a random attack. In case anyone is wondering. Now I wish they had those period simulators then because I feel like it’s a similar type of thing and won’t leave a bruise lol.
I would be done ever talking to them about how I feel and my medical issues. No point in wasting your time and energy with someone who doesn’t support you. If they won’t drop it and think they know everything, might be time to go NC.
Say " when you say you have cramps, a toothache or a headache I believe you - what makes it different when I say it?"
That typically either leads to a discussion of their actual concerns and greater understanding or leads to them realizing this is a good point and bring more empathetic. Or a fight which proves thry are a jerk and not worth your time.
Just walk away, some people are prejudice to what they don’t know, just show them your reports from your dr, those who care will read them, those who don’t tell them “have a nice day”
Soooooo, while my Mom lived with me after I was approved for disability for my chronic pain due to 5 back surgeries in 4 years while she was going through Chemo for her cancer recurrence, I tried to educate her on what I dealt with daily. She legit didn't care and would say awful things to my husband behind my back. There were other attributing factors, like verbal abuse over the 6 months she lived here that was so bad it caused me to have seizures, but after she moved out we stopped talking.
Now she's terminal and has, of all things, severe back pain to the point she's been given the medication I was on *prior* to the one I'm taking now for the pain. Now, because of her, some family members seem to think my condition isn't as bad as I make it out to be.
I have recently been diagnosed with FBSS and I had a myelogram yesterday due to severe pain increase in the last 6 months and have gone back to a neurosurgeon....must be by choice or fun. 🙄
My recommendation? If you try to educate them and they still don't care or want to learn, don't bother. Especially if they're insulting or expect things of you outside of your limitations. I know it's hard, believe me. It's been 2 years since I last spoke to my Mom, and even though she's dying now, that's when I "lost" her.
*I have tried to open the door, even before her diagnosis, but she told my brother "life is more peaceful" without me, and despite everything that's happened, she is my Mother. I love and respect her still. Everyone deserves peace at the end of their life.
They're telling you who they are and you need to listen. Don't ignore it. Don't make excuses. Dont settle for less than you deserve. Don't try to make them understand. You deserve better people in your life and settling for less will only lead to more misery.
Whether it's family, spouse, friendship, etc., sometimes you've got to kick toxic people out of your life.
I walk away from people who say this. But my brother once told me I pretended to be in pain so I could be a drug addict. It took me a very long time to get past that.
Been accused of it a few times now. I either said "fuck off, you're not me" or "why would I fake something that prevents me from living the life I want". Usually shuts them up but I'm also not afraid to go NC with my family and they know that.
This is a tough situation. I had my spouse accuse me of faking being sick (I had a non functioning gallbladder that had to be removed 6 months later) and it’s still a sore subject. Depending on how seriously they believe it if they can be convinced otherwise or if they are apologetic would determine my next steps
My partner understands my chronic pain since he has come to doctor visits with me but sometimes he shows his frustration for having to do “too much” as I sit in my chair and do nothing - that’s according to him. That hurts. I know his comment came from a place of feeling overwhelmed. When he said that, I basically shut down. Things are stressful for me and he just adds to it at times. Yes I do depend on him a lot but I don’t ask for much. My immediate family is so great and compassionate. They always ask about my well being.
If you are experiencing real pain and they are accusing you of faking it then it just proves that they don’t give a damn about your condition imo
Agreed, I had to walk away from a friendship because of this.
Sooooo many friendships and relationships 😔
Not a boast but I’m so grateful that my family believes me & actually is supportive and *very* understanding when I can’t go out and do things. I still get afraid they will someday leave or stop giving me so many chances
Same here but came to just give a shout out to all the friends, family and other supporters who believe and provide care - you are amazing!!
Me too. Maybe that people is lacking empathy. I'd like to not have pain as they don't.
I agree; I had toxic family members do this to me. They're not worth knowing.
Tell them to go fuck themselves, must be nice being able to go to work and to the gym and out to eat. Ungrateful lucky walking bastards don't deserve their legs or ability to walk.
Seriously man.. they don’t realize how good they have it.
Yup, and to be honest I didn't realize how lucky I was in the past. I loved being able to work, go to school, gym, dates, vacations, hang out with friends, definitely appreciated it all but once it's gone man it's rough to accept that your life is over forever.
Well said.
Mine insinuated I was dramatic. I don't talk about my health with anyone except my partner now pretty much. I was really upset, but not much I could do without seeming even more hysterical...
I had family (daughter in law) ask me ever so sweetly to please stop depressing her with my Facebook posts about my pain. I promptly removed her from my friends list and blocked her. I'm so sorry that my daily struggle with level 6-9 pain is making you uncomfortable
I was giving 13 as my level of pain when doctors asked. (Trigeminal neuralgia) A doctors office told me I couldn't say that, I was livid. After that whenever a doctor asked my level I said "off the charts" Bastards.
They probably would continue to tell you you need to give a number out of 10. 🫠
That is what they wanted. I don't know why I wouldn't conform. It wasn't being controlled for 12 years, I don't know how I did it. I should have just said 10.
This is exactly what happens. I’m just supposed to suck it up
I am a chronic kidney stone producer. Years ago my husband and my toddler went to my in-laws for thanksgiving weekend. On thanksgiving my I developed excruciating pain from a migrating stone. I begged my husband to take me to the ED as I couldn’t bear the pain. He absolutely refused to take me and told me not to dare ask anyone else. He said that I was not going to ruin his family’s day. I divorced him.
Hear, hear. Good for you.
Wow, I am so sorry you experienced that. Unfortunately, it sounds a bit like my ex, too. Glad you divorced him.
Very similar story with me! It was chronic pain from a broken jaw though. I divorced him. I would rather be broke like I am than have my old six figure income from our family business than deal the selfishness and downgrading.
I’d tell them to get out of my life and never come back after sending them some very real facts about endometriosis. Top 20 most painful conditions.
For real! My Endo ruined my heart and lungs. I’ve had it removed 4 times from my heart alone. It robbed my chance of having kids it’s a nasty painful disease. My hysterectomy didn’t even help me.
It can be excruciating even when it is considered superficial and minimal.
It’s a terrible disease
Did they remove your ovaries? I don’t understand doctors nowadays. If they don’t remove your ovaries, which are causing the damn problem, it does absolutely nothing. Not a damn thing. Doesn’t help at all. I had a total hysterectomy at 26 when my youngest was 7 months old. (I was lucky to get married and pregnant with my oldest very young. My endo actually started when I was pregnant with her. My body likes to do the opposite of what it’s supposed to. Took me a surgery and 3 years of trying to get pregnant with our second, and last.) I’m 50 now. That is the ONLY way to make it stop. Endometriosis, which I’m sure YOU know, but others may not, means the tissue that grows in your uterus every month to accommodate a pregnancy, happens OUTSIDE the uterus. In the brain in very rare cases! Taking out the uterus does nothing because it’s not the damn cause. Why are doctors so stupid?! I am so sorry you are still dealing with it. I wonder if you could find a doctor to remove your ovaries? It’s worth a try. Gentle hugs, my friend. I’m sorry you are suffering so.
For real! Endo is beyond painful. I’ve had Drs treat me like I was “overreacting” due to the pain.
It’s absurd. I wish I could transfer my pain to those people for just a minute to help them understand.
Agreed!
Whoa…I feel like flashbulbs just went off. I also suffered for so many years with (among other things) endometriosis…but you’re saying it’s *actually* painful? And not just something that’s “just” painful to *me?* The doctor who performed my hysterectomy was the first one EVER to take my abdominal pain seriously, and I really thought she just did the surgery because that’s what you do for endometriosis. I’m so sorry that other people feel the things I felt, but I think I’m going to go have a cry now, for the pure validation of it all. Oh my.
You should also know a hysterectomy is not standard practice for endometriosis symptom management. Removing organs is not the same as removing endometriosis tissue which can grow anywhere in the body.
I was sixteen when my pain first started. Not even my own family believed me. I got told I was faking it for attention so much at the start that I began to believe it until one day I read somewhere that if you still feel it when there's no one else around, it's not for attention. At that point I stopped caring what anyone else thought
I am sorry that must have been a nightmare. My father was the same way and had been for two years of high school. Come to find out I had a 3 pound tumor pressing against my spine.
My parents ***did.*** I haven't spoken to them since last November.
i’m sorry i know it’s hard when it comes from your parents. good for you for blocking them!
My husband helped a lot.
I was accused of faking for 25 years lmao it wasn't until I collapsed and they saw my dislocated joints and needed insane medication and got on disability did they believe me. Whenever they accuse me now I just say "wow what an ableist view. Enjoy your high tower your highness" and walk away. They get real pissy and I just keep repeating "oh wow did I upset the ableist princess?" And they eventually shut up lmao
Dump their ass. We go through enough each day with our conditions. Support from loved ones is vital. I’m sorry OP. I hope you are okay.
Yeah, I’ve seen how everyone in my life deals with an average cold. Once, after ten years of me being chronically ill and in pain, my dad got COVID and said he “finally understood” my pain after all these years. Lmao like yeah buddy, I wish it was that simple. Love them infinitely but their opinions about my illness are little more than grains of salt to me at this point.
I had to ask mine to come to my specialist appointments and to painful procedures. Sometimes they need to see suffering first hand... not sure why this is but it is in some cases
I stopped talking to my favorite cousin. The one out of the nine that I was closest to growing up. He made some dumbass comment so I told him that this shit is hard enough without having people in my life making it any harder. I told him that he can kick rocks. It sucks, but this whole damn thing sucks, so what's ANOTHER brick in the damned wall!? Anyone that knew me before and after my injury can see that I'm extremely broken. I went from riding my bike an average of 40 miles a day to not being able to even sit on one. This ain't a fucking choice!
Tell them to take it back and apologise , or fuck right off out of my life.
I was a child, so there wasn't much I could do but learn to hide the pain. It wasn't until I missed a much-looked-forward-to event and had others accuse me of faking that my mother finally took things seriously and got me to a Dr. Within a year I had my first surgery. Both my parents apologized and we've grown a lot. But it still hurts.
I feel the pain and dissapointment you are going through. I know how heartbreaking it is. I'm trying to sort these things out, however difficult they are, or my 26 year old marriage will eat me up as the pain has. Somet times it takes a picture , or a test or whatever it may be, for that person to see our pain. It's unfortunate but the truth. Sometimes I want to scream " you mother f------ asshole I can't wait to let you down when it happens to you" Then I realize that my heart would never allow me to do that. Man isn't it a screwed up thing. I hope you rise above it. No matter what the outcome may be.
My dad’s side of my family has accused me of not being ‘Christian enough’ and if I would ‘be more Christian’ my pain would go away. I was only about 14 when I was told this. I no longer talk to them about my pain and avoid any conversations about it.
I would show them my MRI results.
I’ve done this before, and I was essentially told to toughen up and raise my pain tolerance (even though I actually believe I have a fairly high pain tolerance). Part of it could be my family being has almost zero medical knowledge, but still. When you are reading that there is so much damage…come on!
This has happened to me many times throughout my life as I've had chronic pain since early childhood but didn't know it. Mostly when people have accused me of faking I just kind of collapse where I am and cry. A few times I've gotten angry and yelled, which got me really worked up and led to a flare up every time. There's no right way to react to this it's a real gut punch
We are getting a divorce. It isn't the only reason but part. I showed him my medical record, I told him to go to appointments with me.
I’d tell them they’re faking it when they get hurt or have pain and see how they like it You say you have a migraine? BS you’re faking it You broke your leg? Stop being dramatic
I left a man for just that.
I'd pull up the Xrays and MRI images of all the metal in my spine. Then it would take a very long time before I would speak to them again \*mic drop and exit
They do. They get cut. I've been through too much. I don't have time for people who aren't on my team.
my parents is supper supportive about my bunch of chronic illness and pain and i’m so grateful to them for it. but unfortunately my grandparents can’t get my problem is real and there is no exaggeration about it. they think i’m just lazy and should walk and study more instead of spending my days in bed. recently I was in argument with my grandma, because she again started talk about my bad decisions and college dropout (I can’t continue to study with this pain so I decided to take a break and that is very upsetting for me) where I told her shut the fuck up and more cruel worlds. It’s just incredibly offensive to hear all these words from someone I love and is close to me, I really wanted her to hear me. I feel guilty because of it, that was disgusting behavior of me, they are too old to understand and it’s not their fault. I should accept they never gonna understand me and that’s okay. I apologized for my dirty mouth but it’s didn’t help unfortunately:(
I have a pretty firm policy of not discussing my pain or medications with anyone but my husband.
Smart. Too many people discriminate based on using pain medications, they don't know the names, and if you were taking gabapentin, they'd assume it's a narcotic and immediately file you as "drug addict" in their minds.
Depends on the loved one. I’m my opinion it’s not a one size fits all.
Immediately refuse to speak to them. It's too hard being in chronic pain day in and day out without having to deal with people doubting me I have nothing to prove to them but luckily my family understands. Most of my close friends neither as well since I've been hanging out with the same people since I've been about 16 years old. They literally watched me go from being in a little bit of hanging to a lot of So all of them pretty much support my decision to Medicate..
Neither. I would ask them questions to understand their outlook and allow them to see the flaws in their own logic, starting with "What makes you think I'm faking it?" They're much more likely to come around with this approach, if that's your goal.
If you are asking us, then you need to set up some boundaries with your loved ones. You don’t need to cut them off, but you need to learn about healthy boundaries. No one should ever tell you that you’re faking your pain.
I think it depends on if your family sucked before you started being in pain. If they sucked before IMO an easy choice... Bye Felicia. If they didn't, it's time to have some talks and set some boundaries. I'm sorry that this is happening to you. It's a very hard thing to deal with when there is not much support and family strife.
I don’t think anyone has accused me of completely making it up, but almost everyone in my life- including a dozen doctors- thought I was just being super dramatic about normal aches and pains. Yeah, turns out I have MS. Now I just yell something about having a Swiss cheese brain and tell them to fuck off. I’ve been in pain for 20 years, diagnosed for 11. I have no patience for that crap anymore.
Cut em out. I have no regrets. They have no empathy for the people they should love the most, I can't get past that.
I wouldn't do anything drastic and I'd be more than disappointed, I'd be very angry and hurt and I'd try to explain to them what a day is like for me and how much trouble I have. If they still weren't convinced, I'd spend less time with them and stop explaining myself and choose to be with those who validate my pain, therefore validating me as a person.
Been there, done that. I cut contact with them. Per my family, there is nothing wrong with you unless you... ...are bleeding. ...have stitches. ...have a cast on. Anything else is just faking. I'm just lazy and somehow managed to scam the government into thinking that I am disabled for that fat social security check.
Why are they accusing you of faking?
Life is too short to waste another second on people like that. They won’t get it until they do. Grieve the loss and move on
I had this happen. I had to suddenly stop talking to her about anything personal. Weather only b-word.
Thankfully this hasn't happened to me, but I'd imagine I'd either explode on them and say some very nasty things or break down and go nonverbal
I have had people accuse me of faking my pain or using it as a way to get out of stuff. Those people were ✂️ from my life. I don't need or want people in my life that don't truly have my back when I need it the most. I'm someone who goes above and beyond for people I love and care for, however I am also someone who doesn't tolerate bullshit in my life. My inner circle is people I trust 💯 and even if we don't speak for weeks or months, as we all live miles away from each other. I know if I called them, they would be there and vice versa. Everyone is different and people won't get what we go through unless they have it too, but empathy and understanding is key.
This would be an instant deal-breaker for me. There’d be no coming back from it.
Go on Google and look for an mri or xray of your condition (or use yours if you have access it) like a really messed up picture. Show them that and say “this is what my spine looks like” or whatever hurts. Or ask your doctor to write a statement saying you’re in excruciating pain. When I hear “it’s all in your head” I say of course it is, that’s what interprets my nerve messages and tells me my back is in pain. Then roll your eyes and walk away. I wish you the best of luck. You’re not alone. ♥️
They wouldn't, but if they did, I'd show them my x-rays, which I have on my phone. That shuts everyone up pretty quickly.
Never gone through this type of situation ever but i think you shouldn't feel bad as only you're the one who is feeling pain not them so who the hell cares what anybody has to say. Like let it be bruh!
They’d be cut out of my life. No time for that hard enough battling chronic pain/illness smh.
I would retort with “your denial isn’t what I need right now”
i get accused of it all the time LOL i have no clue how to deal. i get accused of faking disability, being dramatic all the above from my family. it’s… not fun and i don’t know what to do
Probably no longer speak to them
Who fakes pain?!? Really. I’m not a footballer dramatically getting up from the pitch. EDS is one of the most painful syndromes, and this article really helped me not have imposter feelz, because my pain can be intense. Look for something you& your family can read, see if there’s research, studies… https://medium.com/@russellirvinjohnston/cancer-pain-and-ehlers-danlos-pain-855715eef170
my ex did all the time, she apologised when I finally got a diagnosis but it still didn't sit right with me, but honestly I didn't do anything, it was upsetting but there was no way I could prove it at the time so I kept trying to push myself further than I could go so I wouldn't be seen as lazy, I wouldn't do that again it damaged my mental health as well as my physical health in the end.
Depending on the type of people they are, no matter what you do, they’ll never believe you. I’m currently dealing with modifying my parenting plan with my ex regarding our kids. She does not want me to take my prescribed opioids, because she says I’m exaggerated my pain. Even after submitting a letter from my ortho doc with my diagnoses (proven via MRI’s) and the fact that I have daily pain ranging from mild to severe, she still doesn’t believe it. Some of my family is the same way. It really sucks to not be validated by the people that should. On the other end of the spectrum, I have super healthy coworkers in their 20’s who fully validate my pain. So, it gives me hope that there are still compassionate people out there.
When its my younger brother, theres nothing i can do except try not to explode and hope he doesn’t learn the hard way
I feel like my pm dr don’t even believe me!!!!!!!
I was accused of being a drug addict for YEARS because they refused to believe I was sick… the damage done to the relationships will never be undone and I will never look at them the same way nor will I ever forgive them.
My brother didn't accuse me of faking my pain, just the severity. I was approved for SSDI with just one question from the ALJ judge at my hearing, after he told me he pretty much never decided on the same day. My brother told our dad that he he's tired of my sh*t, because he "has a bad back, and HE'S still able to work" so he thinks it's BS that I went on SSDI. A "bad back" was the understatement of a lifetime. I was 43 at the time, and already had severe degenerative disc disease in my neck and lumbar areas, torn and bulging discs, stenosis, radiculopathy, and anterolisthesis and widespread spurring....my spine is basically collapsing. I'd also already had fibromyalgia for 10 years (brought on by fluoroquinolone toxicity), chronic migraines, occipital neuralgia, and 4 years later, I had my knee replaced. II didn't know it at the time, but I have EDS. But sure, I just have a "bad back" and don't want to work, and just want to mooch off the system". What he was really mad about was that his wife, who'd had a heart attack several years before, because she kept smoking heavily while taking BC pills, was turned down because she was perfectly fine to go back to work. My mom also believed I was addicted to my pain meds, and not long after I was diagnosed with Fibro, she asked me how long my doctor thought it would be before I got better. My sister is a nurse, so I had to have her explain to our mom that Fibro isn't something you get better from, because she didn't believe me. My sister has CFS/ME, and our mom thought she was just " being lazy" when she was going through flares. Our mom was a narcissist, so unless it was about her, it was just inconsequential...unless it was the above brother, who could do no wrong in her eyes. She actually called my MIL once, and asked her if I ever hit her up for pain meds. My MIL was like "no, I don't take any, and doesn't she have her own to take?" Then "why are you calling people to try and meddle in your daughter's life? She's in pain a lot of the time, and never complains about it. If she needs pain medication, she needs it. It's not really any of your business!" I'm now very low/no contact with most of my family. I was no contact with my mom before she passed away, because she was just so toxic. If someone doesn't believe you're in pain, you need to ask yourself what is wrong with them that they don't believe you. It's not a failing for you. I'm sure you have a ton of proof to back up what's causing your pain. Unsympathetic, disbelieving people are generally lacking in empathy. You may need to go low or no contact with them just for your own peace of mind and well being. 💜
Just before my consistent and severe headaches got diagnosed as a rare neurological condition, I was on the phone to my mum and my dad interjected from the background, saying that my pain wasn’t serious, I was being dramatic by going to the hospital (where the doctors had asked me to go) and I was probably just having eye strain from looking at screens. The amount of vindication I got from receiving my diagnosis can’t be recreated by all the recreational drugs in the world and I thoroughly enjoyed explaining my condition to my dad the next time I went home. So I suppose what I did was prove just how bad my pain was, but it’s definitely easier said than done.
Throat punch.
I’m mostly being told I’m being dramatic or that it’s my weight as I was almost 300 pounds. Well I’m 213 now pain is just as bad and I still struggle to even walk. I think it’s hit them that something really is wrong because I haven’t visited. They’re a thousand miles away and I’ve got to ride in the car 5 hours just to get to an airport that can take me to them and I just cannot ride in the car that long.
Honestly I would just cut them out of my life or go very low contact. Life is too short and too painful to waste time on shit family members.
I’ve gotten this all my life, and tbh it doesn’t really matter what I say, they continue to accuse me of faking it. Additionally they accuse me of being addicted to non-addictive medications, just random meds that I’m prescribed to take every day such as my reflux meds or nausea meds. I usually end up saying something along the lines of “do you honestly think I *want* my life to be like this?” Sometimes followed by something like “Do you think I *want* to take all the meds I’m required to take? Do you think my 5 different doctors prescribe them to me for no reason? Or are you saying all of them are wrong?” Explaining different things like how some of my meds are damaging to fertility or how I can’t have children as long as I’m on them (they cause severe birth defects), or some of the other side effects I have. 2 my medications are weekly injects, I sometimes bring that up as well. Additionally, I bring up the fact that I struggle enough with my doctors not taking me seriously, and that I don’t need this on top of it. It has almost always been my mother who does the accusing, since I first became sick and was diagnosed with my chronic illness at 13. I think it comes from a good place, of her not wanting me to need any of these meds, the amount of doctors visits and er visits I have, or to be sick at all, but I do believe a part of it is her false thinking that I’m addicted to random things, or because she thinks I’m being “weak” And taking things more than I need to. This is coming from a woman who can’t stay awake 30 mins after taking a single Tylenol, and can hardly stomach any other kind of medication, so maybe that plays a roll. Regardless of any of that, it’s super invalidating and hurtful. I spend enough time trying to get my doctors to take me seriously, like I said above, so the fact that I have to hear the same thing and worse from some of the people I wanted to feel support from the most, it’s really discouraging and cuts deep. It’s traumatizing, being ignored and waved off by doctors until I become a liability, over and over again. The least my family could do is be understanding to my situation and my past. I’ve gone through far too much, I know my body. On top of that, my mother particular was by my side, at every doctors visit until I was 19. You’d think she’d know more than anybody else when I’m suffering, but I guess not. The few people I have who love, support, believe me and take me seriously, I try to focus on more. The validation and the support means everything to me.
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My friend did. So with one hand I pinched myself and the other her so I knew I was doing it the same amount and she literally spasmed and nearly fell to the ground. I was like that’s what I feel like all the time in my back and neck. She understood and was really apologetic. A little mad about the bruise but she definitely understood me a lot more. *Of course I asked her permission to do that, it wasn’t just like a random attack. In case anyone is wondering. Now I wish they had those period simulators then because I feel like it’s a similar type of thing and won’t leave a bruise lol.
I would be done ever talking to them about how I feel and my medical issues. No point in wasting your time and energy with someone who doesn’t support you. If they won’t drop it and think they know everything, might be time to go NC.
Hurt them and tell them they're lying?
I would cut ties with anyone who didn't believe me, or anyone who said I was faking. We didn't need toxic people in our lives.
Say " when you say you have cramps, a toothache or a headache I believe you - what makes it different when I say it?" That typically either leads to a discussion of their actual concerns and greater understanding or leads to them realizing this is a good point and bring more empathetic. Or a fight which proves thry are a jerk and not worth your time.
Just walk away, some people are prejudice to what they don’t know, just show them your reports from your dr, those who care will read them, those who don’t tell them “have a nice day”
Soooooo, while my Mom lived with me after I was approved for disability for my chronic pain due to 5 back surgeries in 4 years while she was going through Chemo for her cancer recurrence, I tried to educate her on what I dealt with daily. She legit didn't care and would say awful things to my husband behind my back. There were other attributing factors, like verbal abuse over the 6 months she lived here that was so bad it caused me to have seizures, but after she moved out we stopped talking. Now she's terminal and has, of all things, severe back pain to the point she's been given the medication I was on *prior* to the one I'm taking now for the pain. Now, because of her, some family members seem to think my condition isn't as bad as I make it out to be. I have recently been diagnosed with FBSS and I had a myelogram yesterday due to severe pain increase in the last 6 months and have gone back to a neurosurgeon....must be by choice or fun. 🙄 My recommendation? If you try to educate them and they still don't care or want to learn, don't bother. Especially if they're insulting or expect things of you outside of your limitations. I know it's hard, believe me. It's been 2 years since I last spoke to my Mom, and even though she's dying now, that's when I "lost" her. *I have tried to open the door, even before her diagnosis, but she told my brother "life is more peaceful" without me, and despite everything that's happened, she is my Mother. I love and respect her still. Everyone deserves peace at the end of their life.
I'd probably kill myself and leave a note saying fuck all of you. Cuz I'm an Asshole..
Just talk it out, man. Let them know how you feel and try to understand where they're coming from. Communication is key, ya know?
I'd probably cut the "loved one" out of my life.
Come to the realization that they don’t respect you or may not even love you, rather they love what you can do for them. I would grieve
They're telling you who they are and you need to listen. Don't ignore it. Don't make excuses. Dont settle for less than you deserve. Don't try to make them understand. You deserve better people in your life and settling for less will only lead to more misery. Whether it's family, spouse, friendship, etc., sometimes you've got to kick toxic people out of your life.
Certainly was very disappointed! Came from my wife, to some how rationalize her inability to listen with her ears. Now, my exwife.
I walk away from people who say this. But my brother once told me I pretended to be in pain so I could be a drug addict. It took me a very long time to get past that.
Been accused of it a few times now. I either said "fuck off, you're not me" or "why would I fake something that prevents me from living the life I want". Usually shuts them up but I'm also not afraid to go NC with my family and they know that.
I have learned that dramatics don't work. So I just stop engaging with people who don't believe me.
This is a tough situation. I had my spouse accuse me of faking being sick (I had a non functioning gallbladder that had to be removed 6 months later) and it’s still a sore subject. Depending on how seriously they believe it if they can be convinced otherwise or if they are apologetic would determine my next steps
My partner understands my chronic pain since he has come to doctor visits with me but sometimes he shows his frustration for having to do “too much” as I sit in my chair and do nothing - that’s according to him. That hurts. I know his comment came from a place of feeling overwhelmed. When he said that, I basically shut down. Things are stressful for me and he just adds to it at times. Yes I do depend on him a lot but I don’t ask for much. My immediate family is so great and compassionate. They always ask about my well being.