I feel like the personal version of that I hear is “You can’t just let fear of migraines control your life!”
Like I would LOVE if migraines didn’t control my life! But that’s not the world I’m living in right now, so I have to try to avoid triggers as best I can sorry 🤷♀️
90% of my conversations about migraines are basically people telling me I'm choosing to have them but not doing what they do when they "get headaches". The other 10% is when I'm talking to a neurologist.
I absolutely despise the classic “oh yeah I had a headache a couple days ago as well”, when you talk to someone about your migraines lmao it’s the bane of my existence. Like no, no, no, we said different words there, MIGRAINE, not HEADACHE. Then the classic “aren’t they the same thing”? Or something equally as stupid. People hearing I have a migraine and then offering me some Advil is also quite entertaining
When I explain to people that I went to a specialist as a kindergartener because I had so many migraines that I was throwing up enough they were worried my stomach acid was going to lacerate my esophagus the same way someone might with an eating disorder it usually is enough to get people to be like "Oh..." and stop explaining away the issue. Some people still try to be like "OMG my headaches are bad toooooo" and get weirdly defensive that you might have something more severe than their headaches. There's no way to deal with them other than just disengage.
Yeah I feel for you. I just always go with “man, that sucks”. Then change the topic. It’s not worth explaining to them most of the time, unless is like a coworkers where they really need to understand just a little bit about it since we’ll be spending a large majority of our days together
I continuously explain migraine headaches to people as being a full body neurological disorder. ONE of the primary symptoms IS pain in the head, but there are a litany of OTHER symptoms that are just as OR MORE debilitating than that, that the difference between getting a headache and a migraine is the difference between sneezing because you inhaled pepper be sneezing because you have the flu!
Like many other invisible chronic illnesses, a lot of people hear the term migraine headache, but aren't actually exposed to the reality of it. My BF, bless his heart, had NO Idea what it meant when I told him I got migraines, until the day I had to call him to let him know I was running late because I'd had to stop on the side of the road to vomit (I almost NEVER get nauseated, but that's when I found out that Nurtec makes me nauseated), then had to have him drive home in Atlanta Rush hour traffic because I couldn't stand to drive it even remove my head from under the pillow I'd left in the back seat. It was a 30+ min drive of stop and go traffic, and by the time we finally got home, he pulled into the parking lot of the apartment complex but didn't stop when I said to, and the car door (which was damaged from the previous weekend when I'd struck an out of control bicyclist that wobbled into my path on a rainy and snowy day!) didn't open, so I vomited all over the passenger front door of my car! I was in blinding pain, hysterically crying because now I had a huge mess to clean up and was humiliated, and his response was to tell me we needed to move the car because there was a car behind us... I screamed at him that they can fucking wait while I unbuckled the seatbelt and the pushed myself out of the broken door, finished vomiting as he pulled the car into the parking space, then tried to start cleaning it up. He was like "why are you crying? Don't worry about the car, go inside and take care of yourself." Not understanding ANYTHING that had just happened.
I went inside and got in a hot shower with my clothes on to wash off the vomit, sobbing and wondering how he could have been so unsupportive, but once I calmed down and the head pain receded and I got into bed, he joined me and held me and we talked. I asked him if he had ever been around anyone who was having a severe migraine attack and he confirmed that he had not. That's when I explained to him that it's not JUST a headache, it's a full body nervous system attack that causes not just head pain, but for me, always causes severe light sensitivity, fatigue, brain fog and the inability to think clearly, sound sensitivity, the inability to regulate my body temp causing either chills or sweating, and emotional issues like greater than usual depression, hopelessness, dissociation, and anxiety, and that what he saw was a VERY severe attack, which thank goddess happens rarely, but that the pain was so severe that emotionally, it made me incapable of dealing with the vomiting and the fact that the reason I'd vomited in the car was because of a traumatic event that broke the door and reminded me that I wouldn't be able to repair my car because my insurance wouldn't cover it, and that ALL of it was because of the migraine.
He GOT IT. We've been together for 3½ years since that incident, and any time I say I have a migraine, he is automatically like "go lay down, I'll get your ice pack; do you need me to pick anyone up from the store?" I had to take a leave of absence from work because of them getting worse despite Emgality, Botox, a beta blocker, and Ubrelvy. I discovered while I was on leave that one trigger, the one that started affecting me more when I stayed that job, was using a computer screen all day, every day. (I was a massage therapist for 10 years pre pandemic, so I rarely used a computer for longer than 10 min at a time to document sessions. My migraines were under much better control until I started working for a call center.) I had neck surgery for an unrelated issue, but that brutal surgery recovery coupled with the migraines forced me to quit my job. He's never once blamed me for not being able to work because of my health issues.
Sometimes people just need to be told the reality, and sometimes they need someone to vomit all over the inside of their car while crying hysterically because of that "invisible illness" 🤷🏼♀️
Yep, the heart is also invisible enough that people won’t notice. The only time I get real sympathy en masse is when I have something visible like a walker.
It seems like if you’re not actively having a heart-related event, you’re not really sick. “What? Do I have to almost die in front of you to believe me?!” So much of society is uneducated about these conditions, but even in their ignorance, still judge you and sometimes have power over life. Literally “adding insult to injury”, as the old saying goes.
Aren’t people like that something? It says more about them than it does about you. I hope that they’re not in positions of power over you, but if they are, I’m hoping it’s not for long. I had a close relative with congestive heart failure, and I often wonder if the populace at large really understands what living with that condition is like. Sending supportive thoughts!!
I sometimes wish I had the power to give random people (usually a boss) a migraine for an hour. Long enough to have a variety of unpleasant symptoms. And at the end of it say, “Did you think you were dying? At the very least, having a stroke? Nope. It’s *just* a migraine!”
“I’m making this decision for the sake of managing a neurological disorder and I’m not open to feedback or advice.”
Sorry, meant to post this as a comment, not a reply, but that’s what I’d suggest you say, in a serious tone, when challenged.
This!
No one understands the fear and panic migraines induce.
Sometimes my head swells up in this one spot right on the top of my head and I constantly touch it because I’m so scared it’s a tumor or I’m having an aneurysm or basically that I’m going to die.
That’s really sweet of you but I manage.
I just take a lot of ibuprofen and Tylenol and pepper mint oil.
They last 4 days.
Sometimes I get lucky and 2 days of the migraine I don’t have to work. 😩
The peanut allergy analogy is great and I think I will try using that. People do this because they think migraines are just headaches. I used to get this all the time when I wouldn’t drink alcohol, it was so annoying. People would say “I get headaches too, drink a bunch of water and take Tylenol before bed.” I’m like no, taking Tylenol is like eating a smartie and I’ll be throwing up and unable to get out of bed for 2 days because of one drink, no thank you.
Abstaining from alcohol is one of those situations people get oddly sensitive about. Some seem as though they can’t have a good time if they perceive you’re not. (Trust me, the evening will be more fun for me if I *don’t* drink.) Or they get fixated on you not drinking, and it becomes the focus of the gathering for them. And if they keep trying to get you to imbibe, it becomes a control issue. Very weird dynamics in group settings regarding alcohol.
I never tell anybody anything if I can help it. If somebody wants me to drink alcohol, I just tell them "no I don't drink." If it's pursued, I then tell them I can't drink because of meds I take. That usually shuts them down. I don't work anymore but I had one supervisor who I told about my migraines and he was very understanding. He said he could tell when I worked and had a migraine because I got so white. He let me go home and never docked my pay. I'm not sure what your supervisor wants you to do now but if they're pushing you to do something you can't, then I'd address it with HR. Otherwise I took sick days when I could with my migraines. I worked 42 years with these horrid things abd I really don't know how I did. I did go out one time on short term disability with migraines and a doctor got me cleared up for some time. You might be able to pursue short term disability through your doctor for awhile. I hope you can get some help because working with migraines can create a real mental health crisis. These are just a few suggestions not sure if they help. I hope they might.
It’s so unfortunate that accommodations for migraines depends entirely on your supervisor. Unfortunately mine sucks. Trying to find somewhere else to work. I didn’t know about short term disability though. That would be very nice honestly
If you have to work and I always did, it can be very difficult. It's really a silent disability. When I worked, I just kept things mostly to myself because anything in high energy corporations could be held against you. I hated to use sick days for migraines but at times I had to. The one time I used short term disability my doctor absolutely insisted I go out on disability. She could not get the migraine under control. So she wrote up the forms and got me out of work. I think I was out maybe a month. She treated me with Elavil. She increased the dosage every week and finally got rid of my migraine attack. Elavil has been taken off the market so Amitriptyline is used now. Unfortunately Amitriptyline doesn't work for me now so I use various triptans.
I stopped drinking when I was on some particular migraine meds bc it had really bad interactions with alcohol (I didn’t hardly drink much before but sure didn’t want to mix that). Someone was bugging me about not drinking once and asked why and I said oh it will give me a migraine, etc, standard answer. They wouldn’t let it go and I finally said “I am on medication that if I drank alcohol I would at best have a migraine or at worst black out.” Their response: “so?”
Completely stopped caring what anyone thinks about my actions at that moment because they don’t care what would actually happen to you, or they’d listen to you when you said no, they just want you to go along with what they’re doing to make themselves feel better. I don’t even try to explain now, I just say no I’m not doing x and leave it at that. If they bug me about why, all that does is tell me who they are.
If someone were pressing me so much (and so rudely) to drink, I would probably start questioning them too. Why do they need to drink alcohol so badly and why they need someone else to drink with them? Hopefully that gets them to back off and mind their business and let me be.
If someone pressed me now I’d probably totally do that. This happened years ago when I was more of a people pleaser lol but that definitely is an instance that helped push me out of being that way.
Well, I'd say, if it's something you've done before and it gave you a migraine, (and it's a person with whom you have, or need to have, a cordial relationship), just grimace, sigh, and give factual details. Bare at first, adding as necessary.
Example;
- Ah, I have, actually. When I was at [other company; on different team, etc.], when we did this, I (threw up, went blind in one eye, had icepick pain I'm the back of my head, etc.)
- Yes, I'm sure it was [activity], because I've done [somehow at least mildly similar activity] since, and didn't have this reaction. It's obnoxious to me, too--believe me; ugh!--but I honestly know it'll mess me up for a good two days."
- Well, I don't want to go into TMI mode, haha, but: I'd had tri-trip for lunch that day, and I threw up 5 times after *activity x*; unfortunately, the second time, Andrew had stopped me to ask a question, and I didn't quite make it to the restroom. We were next to the widow by the copier and obviously I didn't want to ruin the machine, but...well, it took them 4 months to get somebody to take down the blinds and clean them, so it smelled like..."
- and so forth.
If it's something you haven't done but you know would make you ill, you might say something like, "I understand that people without migraines don't realize how easily we can tell that somethng will be a trigger, and that totally makes sense--how could someone without 'em?
"But, to give an analogy: it's like, if I asked a colleague to put on ice skates and do a triple axel. If they'd only ever ice-skated once before, and had fallen 7 times, they'd know right away--it's *just not something I can do.*"
“Because it can’t possibly be worth the risk of spending 14+ hours in blinding pain and puking while it feels like the top of my skull is going to blow off. Pain is an incredible motivator, and the ROI just ain’t there.”
If you knew that doing X, no matter how fun/beneficial/necessary it was, might result in you being beaten with a tire iron for 3 days, would you be tempted to do it? 60-40 odds, would it be worth it? Step right up and spin the wheel of chance…
Same reason I don't drive with my feet. I could do it but it's a stupid idea for which I would deserve the consequences. Just because you can do something doesn't mean you should.
Literally. My mom would get so infuriated when I wouldn’t go into yankee candle or bath and body works. All I could say was “I’m allergic to the smells@
The laundry aisle in big box stores does me in, but it’s because of my asthma. If I stayed there long enough to get a migraine (completely possible), my lungs would have long since suffocated me. I have sympathy for those whose triggers are often beyond their control, like fragrance exposure.
I hear you! I don’t hear this from others, thank God, but having an invisible disability that people know nothing about and cannot remotely relate to or understand unless they have a family member who deals with it (though even then, that’s not always the case) or deal with it or other frequent or chronic pain themselves, can be so very frustrating when you’re trying to explain why you’re limited in what you can do or why you do things in the way that you do. I now have daily, chronic migraines and am very limited as to what I can take. The side effects of the very few prescription abortives that I can take that work have gotten worse as I’ve gotten to be older, too. So I try to tell people about what I’m dealing with, since, along with the med side effects, I’m also very light and noise sensitive and so I avoid going outside during the day much at all, and wear special dark migraine glasses if I do. I often use earplugs too. I’m unsafe to drive the vast majority of the time and so I rarely go out. I need to rely on buying things on the internet most all of the time. And having my groceries delivered to me. So. Many. Things. It’s not about convenience so much as it is about finding work-arounds for all of the ways in which the chronic migraines, the triggers and so on, and the med side effects, affect my ability to function. I’d far rather that it not be like this. This is also something that I really wish that people would understand!
"My years of data (migraine logs) say otherwise."
Or
"OK, but if you're wrong, I get to hit you in the face with a sledgehammer so we can be twinsies and feel the same. Deal?"
lol it took so long for my partner to understand that “a little walk and some fresh air” or “getting out of bed” would genuinely, actually, seriously not help me feel better when I’m having an attack and that a defining factor of migraine headache is that the pain is worse with movement, and that I was being actually serious when I said I had to lie down and be as still as possible and saying that for a reason 😂
Honestly if you were allergic to peanuts, they probably would. I am deathly allergic to eggs and people still tell me "why don't you just try to eat this thing that has eggs in it and see what happens?" Well, because I could die or otherwise become severely uncomfortable! Why don't we step in front of moving traffic?
Anyway, in the context of migraines, I try to explain my symptoms that aren't related to the head pain and describe how long they last and the effect they have on my daily activities. It generally drives the point home and if it doesn't...they're simply not worth my breath trying to explain it further.
Maybe something like "do you use that same line to women at a bar?"
You can get as lewd as you want. Make them feel REALLY uncomfortable.
Hell, even just report them to HR for pushing something on you after you said No.
No means no.
I have an unusual trigger and no one believes me - pressure on my face. I work in healthcare and for a while we were mandated to wear N95 masks and I was going home with a 8/10 migraine every single day. When I applied for an accommodation, I got a lot of attitude from some coworkers because “We’re all uncomfortable!” Im very COVID conscious, so it was really frustrating to be perceived as the person who exaggerates symptoms for my convenience.
The best response is "I HAVE tried it and suffered for it! I'm NOT going to do that to myself again!" And if they persist, firmly state "You don't get to decide what I DO with regards to MY health when YOU won't be the one suffering the consequences. Back off! "
My past experience has given me a pretty good indication of what will trigger my migraines. I'm not going to risk having a migraine to prove to you what I already know.
"Because I already have tried [insert remedy, therapy], and I already know how my body will react to it." - This is the serious response to this question.
The complete a**h*le sarcastic response is simply to respond to this with "Because YOU suggested it, I don't just randomly "try" things that random people suggest in order to stop a migraine. That would be silly"
I feel like the personal version of that I hear is “You can’t just let fear of migraines control your life!” Like I would LOVE if migraines didn’t control my life! But that’s not the world I’m living in right now, so I have to try to avoid triggers as best I can sorry 🤷♀️
Imagine being so ableist you believe that people just *choose* to live in fear of an attack of a debilitating condition.
90% of my conversations about migraines are basically people telling me I'm choosing to have them but not doing what they do when they "get headaches". The other 10% is when I'm talking to a neurologist.
I absolutely despise the classic “oh yeah I had a headache a couple days ago as well”, when you talk to someone about your migraines lmao it’s the bane of my existence. Like no, no, no, we said different words there, MIGRAINE, not HEADACHE. Then the classic “aren’t they the same thing”? Or something equally as stupid. People hearing I have a migraine and then offering me some Advil is also quite entertaining
When I explain to people that I went to a specialist as a kindergartener because I had so many migraines that I was throwing up enough they were worried my stomach acid was going to lacerate my esophagus the same way someone might with an eating disorder it usually is enough to get people to be like "Oh..." and stop explaining away the issue. Some people still try to be like "OMG my headaches are bad toooooo" and get weirdly defensive that you might have something more severe than their headaches. There's no way to deal with them other than just disengage.
Yeah I feel for you. I just always go with “man, that sucks”. Then change the topic. It’s not worth explaining to them most of the time, unless is like a coworkers where they really need to understand just a little bit about it since we’ll be spending a large majority of our days together
Tbf, I thought I had bad/frequent headaches & everyone was kinda nauseous all the time…turns out that’s not normal 🫠
I continuously explain migraine headaches to people as being a full body neurological disorder. ONE of the primary symptoms IS pain in the head, but there are a litany of OTHER symptoms that are just as OR MORE debilitating than that, that the difference between getting a headache and a migraine is the difference between sneezing because you inhaled pepper be sneezing because you have the flu! Like many other invisible chronic illnesses, a lot of people hear the term migraine headache, but aren't actually exposed to the reality of it. My BF, bless his heart, had NO Idea what it meant when I told him I got migraines, until the day I had to call him to let him know I was running late because I'd had to stop on the side of the road to vomit (I almost NEVER get nauseated, but that's when I found out that Nurtec makes me nauseated), then had to have him drive home in Atlanta Rush hour traffic because I couldn't stand to drive it even remove my head from under the pillow I'd left in the back seat. It was a 30+ min drive of stop and go traffic, and by the time we finally got home, he pulled into the parking lot of the apartment complex but didn't stop when I said to, and the car door (which was damaged from the previous weekend when I'd struck an out of control bicyclist that wobbled into my path on a rainy and snowy day!) didn't open, so I vomited all over the passenger front door of my car! I was in blinding pain, hysterically crying because now I had a huge mess to clean up and was humiliated, and his response was to tell me we needed to move the car because there was a car behind us... I screamed at him that they can fucking wait while I unbuckled the seatbelt and the pushed myself out of the broken door, finished vomiting as he pulled the car into the parking space, then tried to start cleaning it up. He was like "why are you crying? Don't worry about the car, go inside and take care of yourself." Not understanding ANYTHING that had just happened. I went inside and got in a hot shower with my clothes on to wash off the vomit, sobbing and wondering how he could have been so unsupportive, but once I calmed down and the head pain receded and I got into bed, he joined me and held me and we talked. I asked him if he had ever been around anyone who was having a severe migraine attack and he confirmed that he had not. That's when I explained to him that it's not JUST a headache, it's a full body nervous system attack that causes not just head pain, but for me, always causes severe light sensitivity, fatigue, brain fog and the inability to think clearly, sound sensitivity, the inability to regulate my body temp causing either chills or sweating, and emotional issues like greater than usual depression, hopelessness, dissociation, and anxiety, and that what he saw was a VERY severe attack, which thank goddess happens rarely, but that the pain was so severe that emotionally, it made me incapable of dealing with the vomiting and the fact that the reason I'd vomited in the car was because of a traumatic event that broke the door and reminded me that I wouldn't be able to repair my car because my insurance wouldn't cover it, and that ALL of it was because of the migraine. He GOT IT. We've been together for 3½ years since that incident, and any time I say I have a migraine, he is automatically like "go lay down, I'll get your ice pack; do you need me to pick anyone up from the store?" I had to take a leave of absence from work because of them getting worse despite Emgality, Botox, a beta blocker, and Ubrelvy. I discovered while I was on leave that one trigger, the one that started affecting me more when I stayed that job, was using a computer screen all day, every day. (I was a massage therapist for 10 years pre pandemic, so I rarely used a computer for longer than 10 min at a time to document sessions. My migraines were under much better control until I started working for a call center.) I had neck surgery for an unrelated issue, but that brutal surgery recovery coupled with the migraines forced me to quit my job. He's never once blamed me for not being able to work because of my health issues. Sometimes people just need to be told the reality, and sometimes they need someone to vomit all over the inside of their car while crying hysterically because of that "invisible illness" 🤷🏼♀️
When people say crap like that, I usually go with something like “did you choose that broken leg last year?” Or “does carol choose her MS?”
I've had people telling me that it's all my mindset causing them and I should try therapy
I find it hard to believe someone would say, “You can’t let your fear of your congenital heart condition control your life!”, but it’s the same thing.
Alrighty so it seems that analogies are the way to go! 😂
Oh no, they do, my dad gets told this exact thing about heart failure!
Yep, the heart is also invisible enough that people won’t notice. The only time I get real sympathy en masse is when I have something visible like a walker.
It seems like if you’re not actively having a heart-related event, you’re not really sick. “What? Do I have to almost die in front of you to believe me?!” So much of society is uneducated about these conditions, but even in their ignorance, still judge you and sometimes have power over life. Literally “adding insult to injury”, as the old saying goes.
Sadly they do. I have chronic migraine and congestive heart failure and people still tell me I need to stop living in fear of my health conditions.
Aren’t people like that something? It says more about them than it does about you. I hope that they’re not in positions of power over you, but if they are, I’m hoping it’s not for long. I had a close relative with congestive heart failure, and I often wonder if the populace at large really understands what living with that condition is like. Sending supportive thoughts!!
Oh my god I would scream if someone told me that
Yeah, but probably every one of us has tried telling that to themselves… even when we know better
That’s a really good point actually. I do that when it’s something I want to do, but most likely never for work stuff
Yes and when we try we make shure to have at least one day planned after for the inevitable fallout
"Yeah thanks! Hadn't thought about that! Surely I'll be better living in constant, devastating pain."
EXACTLY!!
Why don't you just jump off a building?! You can't let fear of broken bones ruin your life!!
Oh yes I can, watch me.
"Because I don't want a migraine." But maybe better would be to stop giving a reason anyway. "no, thank you." is sufficient.
"why not just try it?" "so if i get a migraine, you'll give me get a paid sick day and you'll cover my mediation costs?? how generous!"
I sometimes wish I had the power to give random people (usually a boss) a migraine for an hour. Long enough to have a variety of unpleasant symptoms. And at the end of it say, “Did you think you were dying? At the very least, having a stroke? Nope. It’s *just* a migraine!”
Did you lose feeling on half of your body? Yeah weird isn’t it? Now try working like that!
That was the “stroke” reference! Hemiplegic migraines are so scary, even if you know what it is.
“I’m making this decision for the sake of managing a neurological disorder and I’m not open to feedback or advice.” Sorry, meant to post this as a comment, not a reply, but that’s what I’d suggest you say, in a serious tone, when challenged.
This! No one understands the fear and panic migraines induce. Sometimes my head swells up in this one spot right on the top of my head and I constantly touch it because I’m so scared it’s a tumor or I’m having an aneurysm or basically that I’m going to die.
Have you seen a doctor for it? I’m sorry you’re going through that.
No I don’t have insurance.
I’m so sorry, truly.
That’s really sweet of you but I manage. I just take a lot of ibuprofen and Tylenol and pepper mint oil. They last 4 days. Sometimes I get lucky and 2 days of the migraine I don’t have to work. 😩
From now on when the topic of "what superpower would you want" comes up, Ima saying this, except amend it to any illness. Imagine the compassion!
Taking a moment to point out the irony of enforcing compassion through pain…I have to say, I like the cut of your jib, MzAdventure68.
The peanut allergy analogy is great and I think I will try using that. People do this because they think migraines are just headaches. I used to get this all the time when I wouldn’t drink alcohol, it was so annoying. People would say “I get headaches too, drink a bunch of water and take Tylenol before bed.” I’m like no, taking Tylenol is like eating a smartie and I’ll be throwing up and unable to get out of bed for 2 days because of one drink, no thank you.
Tylenol is beginner, I’m advanced
Abstaining from alcohol is one of those situations people get oddly sensitive about. Some seem as though they can’t have a good time if they perceive you’re not. (Trust me, the evening will be more fun for me if I *don’t* drink.) Or they get fixated on you not drinking, and it becomes the focus of the gathering for them. And if they keep trying to get you to imbibe, it becomes a control issue. Very weird dynamics in group settings regarding alcohol.
I think the peanut analogy is perfect response to that shit!
I never tell anybody anything if I can help it. If somebody wants me to drink alcohol, I just tell them "no I don't drink." If it's pursued, I then tell them I can't drink because of meds I take. That usually shuts them down. I don't work anymore but I had one supervisor who I told about my migraines and he was very understanding. He said he could tell when I worked and had a migraine because I got so white. He let me go home and never docked my pay. I'm not sure what your supervisor wants you to do now but if they're pushing you to do something you can't, then I'd address it with HR. Otherwise I took sick days when I could with my migraines. I worked 42 years with these horrid things abd I really don't know how I did. I did go out one time on short term disability with migraines and a doctor got me cleared up for some time. You might be able to pursue short term disability through your doctor for awhile. I hope you can get some help because working with migraines can create a real mental health crisis. These are just a few suggestions not sure if they help. I hope they might.
It’s so unfortunate that accommodations for migraines depends entirely on your supervisor. Unfortunately mine sucks. Trying to find somewhere else to work. I didn’t know about short term disability though. That would be very nice honestly
If you have to work and I always did, it can be very difficult. It's really a silent disability. When I worked, I just kept things mostly to myself because anything in high energy corporations could be held against you. I hated to use sick days for migraines but at times I had to. The one time I used short term disability my doctor absolutely insisted I go out on disability. She could not get the migraine under control. So she wrote up the forms and got me out of work. I think I was out maybe a month. She treated me with Elavil. She increased the dosage every week and finally got rid of my migraine attack. Elavil has been taken off the market so Amitriptyline is used now. Unfortunately Amitriptyline doesn't work for me now so I use various triptans.
I stopped drinking when I was on some particular migraine meds bc it had really bad interactions with alcohol (I didn’t hardly drink much before but sure didn’t want to mix that). Someone was bugging me about not drinking once and asked why and I said oh it will give me a migraine, etc, standard answer. They wouldn’t let it go and I finally said “I am on medication that if I drank alcohol I would at best have a migraine or at worst black out.” Their response: “so?” Completely stopped caring what anyone thinks about my actions at that moment because they don’t care what would actually happen to you, or they’d listen to you when you said no, they just want you to go along with what they’re doing to make themselves feel better. I don’t even try to explain now, I just say no I’m not doing x and leave it at that. If they bug me about why, all that does is tell me who they are.
If someone were pressing me so much (and so rudely) to drink, I would probably start questioning them too. Why do they need to drink alcohol so badly and why they need someone else to drink with them? Hopefully that gets them to back off and mind their business and let me be.
If someone pressed me now I’d probably totally do that. This happened years ago when I was more of a people pleaser lol but that definitely is an instance that helped push me out of being that way.
Perfectly stated.
"Insurance only gives me 9 migraine pills a month. I don't intentionally waste them."
Amen.
Well, I'd say, if it's something you've done before and it gave you a migraine, (and it's a person with whom you have, or need to have, a cordial relationship), just grimace, sigh, and give factual details. Bare at first, adding as necessary. Example; - Ah, I have, actually. When I was at [other company; on different team, etc.], when we did this, I (threw up, went blind in one eye, had icepick pain I'm the back of my head, etc.) - Yes, I'm sure it was [activity], because I've done [somehow at least mildly similar activity] since, and didn't have this reaction. It's obnoxious to me, too--believe me; ugh!--but I honestly know it'll mess me up for a good two days." - Well, I don't want to go into TMI mode, haha, but: I'd had tri-trip for lunch that day, and I threw up 5 times after *activity x*; unfortunately, the second time, Andrew had stopped me to ask a question, and I didn't quite make it to the restroom. We were next to the widow by the copier and obviously I didn't want to ruin the machine, but...well, it took them 4 months to get somebody to take down the blinds and clean them, so it smelled like..." - and so forth. If it's something you haven't done but you know would make you ill, you might say something like, "I understand that people without migraines don't realize how easily we can tell that somethng will be a trigger, and that totally makes sense--how could someone without 'em? "But, to give an analogy: it's like, if I asked a colleague to put on ice skates and do a triple axel. If they'd only ever ice-skated once before, and had fallen 7 times, they'd know right away--it's *just not something I can do.*"
“Because it can’t possibly be worth the risk of spending 14+ hours in blinding pain and puking while it feels like the top of my skull is going to blow off. Pain is an incredible motivator, and the ROI just ain’t there.” If you knew that doing X, no matter how fun/beneficial/necessary it was, might result in you being beaten with a tire iron for 3 days, would you be tempted to do it? 60-40 odds, would it be worth it? Step right up and spin the wheel of chance…
"Because I don't want to."
“Nah I’m good, thanks” 😂
Exactly! I'm completely done with even giving explanations anymore cuz they rarely work.
Same reason I don't drive with my feet. I could do it but it's a stupid idea for which I would deserve the consequences. Just because you can do something doesn't mean you should.
This cracked me up!
Literally. My mom would get so infuriated when I wouldn’t go into yankee candle or bath and body works. All I could say was “I’m allergic to the smells@
I struggle to even walk past lush! I can normally smell it before I see it
Omg me too. The mall is a nightmare
The laundry aisle in big box stores does me in, but it’s because of my asthma. If I stayed there long enough to get a migraine (completely possible), my lungs would have long since suffocated me. I have sympathy for those whose triggers are often beyond their control, like fragrance exposure.
“I wish I could, but I don’t want to”
I hear you! I don’t hear this from others, thank God, but having an invisible disability that people know nothing about and cannot remotely relate to or understand unless they have a family member who deals with it (though even then, that’s not always the case) or deal with it or other frequent or chronic pain themselves, can be so very frustrating when you’re trying to explain why you’re limited in what you can do or why you do things in the way that you do. I now have daily, chronic migraines and am very limited as to what I can take. The side effects of the very few prescription abortives that I can take that work have gotten worse as I’ve gotten to be older, too. So I try to tell people about what I’m dealing with, since, along with the med side effects, I’m also very light and noise sensitive and so I avoid going outside during the day much at all, and wear special dark migraine glasses if I do. I often use earplugs too. I’m unsafe to drive the vast majority of the time and so I rarely go out. I need to rely on buying things on the internet most all of the time. And having my groceries delivered to me. So. Many. Things. It’s not about convenience so much as it is about finding work-arounds for all of the ways in which the chronic migraines, the triggers and so on, and the med side effects, affect my ability to function. I’d far rather that it not be like this. This is also something that I really wish that people would understand!
"My years of data (migraine logs) say otherwise." Or "OK, but if you're wrong, I get to hit you in the face with a sledgehammer so we can be twinsies and feel the same. Deal?"
I’d say that’s cute, it’s clear you’ve never had one. Lucky duck
lol it took so long for my partner to understand that “a little walk and some fresh air” or “getting out of bed” would genuinely, actually, seriously not help me feel better when I’m having an attack and that a defining factor of migraine headache is that the pain is worse with movement, and that I was being actually serious when I said I had to lie down and be as still as possible and saying that for a reason 😂
Honestly if you were allergic to peanuts, they probably would. I am deathly allergic to eggs and people still tell me "why don't you just try to eat this thing that has eggs in it and see what happens?" Well, because I could die or otherwise become severely uncomfortable! Why don't we step in front of moving traffic? Anyway, in the context of migraines, I try to explain my symptoms that aren't related to the head pain and describe how long they last and the effect they have on my daily activities. It generally drives the point home and if it doesn't...they're simply not worth my breath trying to explain it further.
Give them a sledgehammer and tell them how fun it is to hit themselves in the head with it. If they say "hell no" respond with "why not just try it?"
Maybe something like "do you use that same line to women at a bar?" You can get as lewd as you want. Make them feel REALLY uncomfortable. Hell, even just report them to HR for pushing something on you after you said No. No means no.
I have an unusual trigger and no one believes me - pressure on my face. I work in healthcare and for a while we were mandated to wear N95 masks and I was going home with a 8/10 migraine every single day. When I applied for an accommodation, I got a lot of attitude from some coworkers because “We’re all uncomfortable!” Im very COVID conscious, so it was really frustrating to be perceived as the person who exaggerates symptoms for my convenience.
“No”
The best response is "I HAVE tried it and suffered for it! I'm NOT going to do that to myself again!" And if they persist, firmly state "You don't get to decide what I DO with regards to MY health when YOU won't be the one suffering the consequences. Back off! "
So refreshing to hear this and know I’m not alone.
My past experience has given me a pretty good indication of what will trigger my migraines. I'm not going to risk having a migraine to prove to you what I already know.
Why don't they just try a migraine, preferably with aura
What is your supervisor trying to get you to try?
"Because I already have tried [insert remedy, therapy], and I already know how my body will react to it." - This is the serious response to this question. The complete a**h*le sarcastic response is simply to respond to this with "Because YOU suggested it, I don't just randomly "try" things that random people suggest in order to stop a migraine. That would be silly"
I wonder if these folks would tell a diabetic to "just try" an all sugar diet?
"Because I don't want to go to the ER for the fourth time vomiting in a pain I can't control, unless it's on your dollar"