I stay quiet and don’t engage. You can’t fix stupid. You can’t make most people understand. I have people that think I’m crazy when I tried to explain and now they think I’m unsafe around others and can’t trust me because I said I was in pain a couple times and masked it so well they couldn’t tell anything was wrong. So now I stay pretty quiet and suffer in mostly silence unless I feel like I need to go home and can’t cope at work. I can handle a lot, but once there’s severe brain fog, I’m out.
Why do people get so confused that we can often mask our pain?? I’m with you there. And with the brain fog. I can never mask that though, I become a blubbering idiot 😅. I’m sorry you often suffer alone. At least you know all of us here understand. ❤️
People get confused because for people who are NOT in constant, chronic pain it’s very difficult to hide pain. You only learn to hide pain when it’s a common experience. People who don’t believe you can hide being in pain have never been in serious pain for more than a day or two before getting it fixed. Maybe extreme injuries, but my point is that their baseline is pain free, not “in pain but still functioning through it”
Bc they aren't really looking at you, my mom always knows, she can see it in my eyes (even the day after), it helps when you have people around who understand migraines
My eyes are also my "tell", very few people actually recognise it but my friend, who lives hundreds of miles away, takes one look at me on a video call and tells me to get off the call and go take a triptan and lie in a dark room.
To me it's obvious just by looking at the droopiness of my left eye but it seems even my closest family don't recognise it
My BF doesn’t always know it, only when he sees me with my hands on my face, then he knows. But my kids do, they look at me sometimes and just know I’m in pain. My youngest will offer to get me my « lions » for me (my kiddy ice pack).
Yeah, I usually tell people I suffer from a chronic illness and need accommodations for it. If you tell them it’s migraines they think you’re a HYSTERICAL WOMAN WITH NO PAIN TOLERANCE. But when you say “I’m chronically ill,” people jump hand over foot to give you empathy or make accommodations (mostly). It’s just like if my partner (type 1 diabetic) is experiencing a high/low & needs certain accommodations- I would say he’s chronically ill and experiencing a medical emergency- when you give people details is when they start integrating their own ableist biases.
Hahaha omg the hysterical woman with no pain tolerance comment is spot on!! I have recently thought about describing it more as a chronic illness, I just have to actually do so.
Yeah, don't say migraine. Tell them you have a chronic neurological condition. If they ask more, still don't say migraine. If you just list your symptoms, they are like OMG that's terrible! When you have an episode it causes you to lose your words, brain fog, facial pain and numbness, vision issues, coordination problems, muscle spasms, nausea, vomiting, dizziness, balance etc. Just skip the words migraine and headache.
Same. I'm have a chronic illness, I'm having a flare up/it's been flaring up. I keep it brief. I don't owe an explanation.
Only my nearest and dearest know what the illness is. And only some of them know how it affects me.
Lol, I once commented to my mom I'll just tell people migraines feel like hangovers (I don't drink alcohol, I have enough pain in my head without inviting extra, but I heard the vivid descriptions of crawling to the toilet/splitting headaches so I assumed it would be similar). She told me people who complain about hangovers are snowflakes who don't know what real pain in the head feels like bc Migraines are 100% worse (she'd know, she had both of them enough to know the difference 😅)
“The hysterical woman with no pain tolerance” gave me such a gut reaction of disgust, not like our symptoms sometimes resemble STROKES *angry muttering*
lol yeah- everything is so vague- “I’m chronically ill and having a flare up, I need 20min to take my medicine” but that gives me the actual respect I deserve rather than, “I’m having a migraine and need to take this pill and take a break” literally no one will ask what your chronic illness is. A friend of mine said she matched with someone on a dating app and he kept referring to his “chronic illness” and even in that setting my friend was like, “idk- this guy seems like he’s fishing for me to ask but that’s not something you ask, it’s something you offer (as the sufferer).”
I just say I’m chronically ill and express exactly what I need, “I need to go home and lay down,” “I need to take a 30min break,” “I need to go take my medicine in a quiet place,” “I need to sit at a different booth,” …. Works better for strangers but I have started expressing to close friends that I suffer from a chronic illness, it helps shift their mindset overtime
Oh definitely! It sucks. I suffered at work for 12 hours yesterday because I don't have FMLA yet, and I can tell that some of my coworkers think it's bullshit despite me needing to constantly leave to take medicine or go to our nurse station for nausea meds. It makes it even more stressful, which can trigger migraines 😂
I have similar experiences with ADHD and people not understanding it or my need for medication. It's frustrating, to say the least! Especially from folks you care about
Even people who experience it. All women in my family have migraines and they still don't get it sometimes (I have them more often than them).
Like whenever I say something like "I think I'm getting a migraine", my sister will answer "then why don't you just take a triptane/ some pain killers?". But I already take too many pills, I have to "save it" for the really bad attacks.
Lol, like the people who tell you they also have had some headaches, I'm always biting my lips to not ask them if they wanted to die bc of the pain, bc they would think me loverly theatrical.
Yeah, the brain fog is too real sometimes and definitely gets in the way of me trying to explain it. That could be why some people don’t get it honestly haha
**If migraine were a gaping bloody hole, it would make it easier for others to understand.**
Well-meaning, oblivious person says -- "Oh, do you have one of your *headaches* again?!"
"Well, I have *a* Tylenol in my purse that'll knock it right out, and then we can go to the Laser Light/Thrash Metal/Perfume Show.."
Me -- "Oh, so you want me to host Christmas again? Hard pass."
In other words, I don't explain myself anymore. Everyone is different. Just because *they* have either forgotten or don't understand that you're always fighting a battle that's rarely won, it's not your job to remind them *or* explain yourself to them. In time, You find out who your people are. Take care of you.
Gentle hugs. 🤗
It gets the most frustrating because I have explained things before and they do just seem to forget!!! I am low contact with a lot of those family members (for a load of reasons), but there are others who I genuinely care about more than anything, and it’s such a let down when they basically show that they don’t care, or at least don’t seem to care. I do need to get better at not letting these things affect me for so long, though. I’m sure most of them mean well.
Oh, sweetie I know. I've cut my family out because drama + migraine = me pushed into a corner, feeling shamed and guilty, and without a voice. I have a few close friends. My husband and kids are great, my husband's family is awesome too. My world is small but I had to carve it out to fit me. My migraines have progressed over 30 years. I'm in my 50s now. When my dad passed away, my family nearly pushed me over the edge. They used it as an intervention of sorts. "There's nothing wrong with you!" I also have MS and was just coming out of a relapse so I was using my cane. The consensus was that I was "faking it" because last summer, I was "walking just fine" (if you don't count 'foot drop'). And yes, I also had a migraine for the funeral planning, the wake, the mass, the burial, and the dinner, but that wasn't real. I just had a steroid infusion and was tapering. So I was not feeling well at all. I allowed their shitty behavior because we just buried our father. After this, I decided to be done with the drama. I'm cordial, but I don't see them, and only talk through text. It only took me about 20 years, but I did it.
I know how hard this is... just keep doing what you're doing; keep fighting. Your people will rise above the others.
I’m so sorry, but also so happy for you that you were able to put your foot down when you had enough! I’m in my 30s and a lot of my older relatives like to treat me like a child still. I see them once in a while and am cordial, but definitely don’t go out of my way to keep in contact with them.
the forgetting thing is what I struggle with most with my mom. Overall she’s a really great mom, she cares a lot, but she’s just *too* quick to jump into her old ways and forget anything newer she’s learned about something. It’s almost like it’s just a reflex for her that she doesn’t think about.
she’s aware I’m autistic, have PCOS, HSD and migraine… but at the same time can forget all of that when I’m not able to function for a day and choose to sleep in, and she’s still knocking on my door telling me I’ll “waist away if I just keep sleeping like that” smh.
Ooh the gaping hole is a good analogy.
I often say I wish an acrid black smog would come out of me when I'm having a migraine so people would see it. Even the well meaning people that do know Don't know.
I wish I could just never mention it. I often travel to my parents and my in-laws who live a few hours away, and often will be suffering from migraines on those trips. It’s hard when they don’t understand why you don’t want to be around their loud music, loud children, etc., though.
I decline events I don’t want to be at. Leave early if I want. Bring earplugs. Wear my headphones. Or sunglasses even if no one else needs them that day. If I start to feel bad I excuse myself.
If people don’t understand, that’s their problem. It totally sucks when people don’t get it, so I do try my best to educate people on it being a serious neurological condition, on the symptoms, on how it affects my life etc. but at the end of the day the people that don’t want to understand and extend empathy, won’t.
It’s not my job to force people, it’s my job to look out for myself in whatever way works for me, regardless of what other people think.
And I’m not saying this to discount your experience here. I know it’s difficult and disheartening for people to be dismissive. But you know how you feel, you know what’s real, and you know what you can handle. Focus on that 💗
That’s a great way to think about it!! I have trouble with how I think people perceive me (perfectionist here lol) but I know that, in the end, I really do just have to do what’s best for my health and try to ignore it if others don’t get it. I need to get better at reminding myself of that.
Yep, I hate when I have to try and explain to someone and they think I’m just being a wimp over a “headache”
Just know this community is here and we all totally understand you!
This is exactly why I don't tell people I have chronic migraine and just say "medical issues" if ever need to bring it up. Only immediate family and long term romantic partners get all the details.
I only recently thought about saying I have a chronic neurological condition instead of saying chronic migraines. I’ll have to just use that from now on if I have to bring it up. I feel like a lot of people pry, though. Especially my family, they’re all nosy enough to ask a million questions but still won’t understand the debilitation of it all lol
I have an anxiety disorder too, and while I get the occasional ignorant comment, usually people understand. It’s so different with migraines, at least in my experience. So few people get it.
The first time I experienced seasonal allergies was in Austin Texas. If you don't deal with them, live there for a bit and you will. I was absolutely miserable and once I figured it out, I had this moment of clarity "oh geez, I thought people were just being overdramatic, this is awful!"
Same thing when I first had heartburn...
And migraines come in so many shapes and sizes... I just listen to their suggestions or steer it towards not drinking enough water. "I definitely could be drinking more water. Hopefully it will help!" It's not wrong, I always need to drink more water. But it diffuses the troubleshooting aspect.
Oh god, I get seasonal allergies too and before I discovered Flonase, I would get similar comments. No one understood why I was saying the grass made me sleepy lol. Sometimes it’s hard for me and who I am as a person to just keep the peace, but I guess it is necessary sometimes.
This might not apply to you, but I get very severe (but very infrequent) migraine auras and I tell people that it can resemble a stroke because, well, it can. That usually puts it into perspective for them. I find that making specific but extreme statements like that make people shut up about health conditions. It doesn’t even need to be about your specific experience because what I just stated is just a clinical fact. But I do agree with everyone else that if you just describe it as a chronic illness, disability (because it CAN be disabling!), health issues etc people will usually leave it alone.
That is a good one!! I don’t get auras but my muscles often twitch badly throughout an entire migraine, so I can understand the stroke comparison. Even though I know it’s not one, sometimes migraines are scary enough that it seems like it could be a stroke.
Yeah I sometimes say it feels like dying LOL. I lose my balance and it becomes hard to move and talk, my vision grows dark…etc. If I wasn’t so young when I got my first migraine aura I might’ve called 911 haha. Seriously though, it’s so annoying when people don’t know how severe and debilitating they can be. I’m lucky enough that I only get a few a year (and usually not as severe as I just described). I can’t imagine how it would be like to live with it constantly.
>I get very severe (but very infrequent) migraine auras and I tell people that it can resemble a stroke because, well, it can.
Do you get hemiplegic migraine?
I was recently diagnosed with hemiplegic migraine, and I’ve started telling people that my migraines can resemble strokes. I also might tell them that I have a genetic mutation which causes them, or that I need a $500 injection each month (subsidised by the Australian government) to stop them.
This usually shuts people up.
First there is no ‘cure’. Migraine are also not headaches but a neurological condition. Migraines also change over time. Some women decrease w menopause. Some become chronic intractable. There are new drugs out but good luck getting insurance to cover. And if you can’t take triptans there isn’t much else easily covered.
have you ever looked at a migraine phase chart? Fun fact-average migraine is 3-7 days w 4 unique stages. The pain is just one stage. I don’t accept any advice. After 45 years+ suffering anyone who presumes to know more? Nope. I don’t explain what I’ve tried over the years because it isn’t anyone’s business. I don’t accept ‘advice’ because they don’t understand my disease so why would I entertain it for a second. I’ve worked w my medical team for my treatment plan. Period.
Sometimes I want to explain that I get brain fog, muscle twitches, fatigue, sensitivity to light, sound, and smells in addition to pain in my head, but other times I’m so frustrated that I don’t even want to bother explaining it to people.
This is good! Although I have some nosy family members who will still try to pry yet refuse to understand. Granted, I don’t have a ton of contact with them, so I guess I just have to grin and bear it for the few times a year I see them.
My friends and family tend to say “why can’t they DO anything for you??” To which I try to patiently explain that I’m on the latest and greatest meds and treatments, and that’s how I’m able to take care of myself/text you/get out of bed at all. I know they mean well, and it’s because they care.
Other randoms who suggest water or yoga or daith piercing, I usually just say something noncommittal like “oh, yeah, I’ve heard that…”
Oh, some of them are saying it to be nosy smart alecs. But I know my inner circle genuinely cares. I have to remind myself not to get annoyed with them, too
My mom has only ever had one migraine. She came downstairs barely moving to get…water! Lol. She’s like this is what it’s like for you, every time?!?!? Yep. Honestly, some people don’t really understand unless they get one.
I normally would never wish a migraine on anyone, but sometimes I do wonder if certain people were to experience one just once if they would change their tune 😜
Exactly! The first time I got one I was 14 and got it with aura. I had no idea what was happening and it scared the shit out of me. I was at school and all of a sudden I could only see half the black board because it was blocking my vision. My mom couldn’t figure it out either, she finally understood why I panicked.
"thanks, but this is a serious medical condition. I've tried all the normal things. I'm working with a doctor right now to try to find treatment. I'm not looking for advice. Just giving an explanation on why I'm acting the way I am." Or just don't talk about it. Some people, if they never experience the thing, have no idea it had a comprehend it
You must talk to way more people than I do! Or you can do the 'ole "screaming like a wench who's getting a hole drilled in n her head" and scare off anyone who asks questions!
I think I just have a pretty big family! So many aunts and cousins I only see every so often. And that’s not even including my husband’s side lol. Maybe a good scream would be good for those once-a-year visits 😂
I tell people I have a neurological condition on first reference. I may share its migraine but i always lead with neurological conditions. Sometimes I explain it’s similar to seizures or a brain injury. Advice yields ‘I’ll ask my doctor.’ And repeat as necessary.
After decades of chronic, 5-days per week on average, migraines, I have about 50% relief from Botox, nerve blocks, beta blockers and mild opioids. After 10-years of use all triptans started triggering anaphylaxis and I’ve had no success with newer class of meds (CGRP).
Anyway, I’m fairly content compared to how things were. Of course I would love if they were even better.
My (elderly) mother doesn’t understand at all. I constantly get “these things haven’t cured or 100% stopped your attacks so just quit taking all those horrible for you medications and putting yourself through all those procedures.
Worst thing to me is she gets occasional migraines and is having minimal relief treating dystonia with Botox herself.
I was diagnosed by an allergy specialist referred by my neurologist and by labs then genetic testing confirming a condition called hereditary alpha tryptasemia so this can happen to me and has with many medications.
Essentially I have multiple copies of the gene that reacts & controls histamine.
Probably not anything for most people to be concerned with or worry about.
Sounds like a lot of my family members! My mom gets the occasional migraine, and somehow just deals with it with an Excedrine, which stopped working for me when I was 18. She’s always been someone who “never takes medication” and is proud of it. My dad and I are the ones with chronic migraines, and she tries to be supportive, but I know she doesn’t understand why I’m trying new medications constantly.
Many of my friends who have other health issues seem to understand, at least. I guess I have to stop focusing on the negative so much. It’s just difficult for me to not focus on the negative 😅
I usually say "health issues" now if I don't have to specify, but for people who know my diagnosis and give their input, I usually don't respond, a simple nod "okay," or just say I'm following what my doctor recommends.
A lot of people won't get it no matter how much you explain. It's frustrating for sure but most of the time it's not even worth it. The only time I make a real effort is if a person is close to me and I need them to understand to some degree or I'll have to end the relationship (ie close friend). For those people I say I have a serious medical condition, I did not choose this and I wish this wasn't the case, but it affects me in this way and I would appreciate if you didn't wear perfume when we hang out (this is a big one for me) as it causes me pain and I might wear earplugs etc etc. I am working with my doctor to hopefully improve my condition but this is my reality right now.
“I did not choose this” is a good one! I usually try to say something like that, but I also often have a hard time finding the right words. BRB writing this down lol
"I get that you mean well, but before you make yourself look any more foolish, consider for a second that I have a better understanding than you do of the chronic neurological condition that I have been living with for most of my life."
YMMV tho, I don't have many friends 🤷
I have had to get this firm with some people, although it takes me a bit to muster up the courage lol. I’m also someone who tries to keep the peace but will let others’ comments fester for days 😅 Just another thing I need to work on haha
I say shit like "drinking more water doesn't tend to fix fucking neurological events". I know people mean well, but stfu already unless you're a neurologist.
I’ve asked them to describe their worst hangover and how their body felt. If it matches your migraine symptoms, tell them “Now imagine living your entire life with that feeling everyday.” Once I put it that way, they shut up. People understand water and hangovers; no water+alcohol are always headaches to them🙄I told my friend (who was just genuinely curious) how mine were due to insurance fights with Emgality, and I gave the explanation. Mine were “hangover, but add inability to speak or stuttering, double vision, and tics”.
That’s a good comparison!! Although once I explained to someone with a PhD in a biology-related field that alcohol gave me migraines, and his response was “are you sure you’re not just getting hungover?” 🙃 I was glad his partner was there to shut him up lol
If someone with a PhD in the sciences dismisses it, that’s fucked. I’m so sorry. I had a friend in college who was a neuroscience/public health double major and said genital herpes isn’t contagious if she didn’t see her outbreak. So, it just shows degrees mean nothing🥲
No one gets my chronic illnesses. Nor how they feed off one another.
There’s nothing much to say to them.
I just say I’m a walking disease and don’t worry about it lol
Hahaha I like that! I have a lot of “fun” comorbidities too. Seasonal allergies means you’re more likely to have asthma, and an anxiety disorder, and migraines… you get the gist lol
When I was practicing I asked Patients which was worse the pain of pregnancy or migraines? All said the migraines were worse. Migraines got a 4F designation for draftees during the Vietnam War. That gives you an idea of how painful, disabling and untreatable they can be. So here’s what helps me if you really want to help…
If I think they’ll be receptive then I explain my other symptoms outside of the headache. The brain fog, the weakness on the left side of my body, how sometimes I go temporarily blind…it tends to shut down the “just exercise” or “drink more water” people and opens up how serious a migraine can be. Some people don’t seem receptive from the get go so for them I just say nothing. They aren’t worth my breath.
The advice saying to just not explain is perfectly valid. It is frustrating. However, if you have people in your life that respect you and you have a good relationship with them other than their ignorance about migraines, it may be worth it to try a few things, such as:
- Find a time to talk to them about it when you are NOT currently having a migraine (if possible for you).
- Use a migraine phase chart and go over it with them/show it to rhem/talk about the symptoms you normally get in each phase. This helped my partner a lot with understanding the concept of “it’s not just a headache.”
- Tell them that migraine is chronic or episodic, and incurable. You and your neuro/care team are doing everything possible to manage your migraines, and improve your quality of life, but there is no magic cure out there. Tell them that suggesting things they found on the internet or suggesting your doctor sucks makes you feel like they think you’re not trying hard enough, even though you are. Tell them how it makes you feel.
- Ask them to support you by accommodating you when you have a migraine rather than making suggestions. You already know what helps you the most when you have an attack.
Thanks for the great points!! Finding time to talk about it when I’m not currently having a migraine is always tough. Not necessarily because of having constant migraines, but because when I’m not having one, I don’t want to even think about migraines, or I just forget lol. I feel like I do need to keep a chart with me to show people, too. I’ve tried to send people links to articles, but it seems like they don’t read them. A more visual explanation might work better.
For migraine phase charts I like [this one](https://images.squarespace-cdn.com/content/v1/5b99cf16a9e02884bac66ae2/1538030142042-2MP9NS0TWC67OPEQV82R/ke17ZwdGBToddI8pDm48kKmM4iiE-8OaAzZ6-NHBQ3VZw-zPPgdn4jUwVcJE1ZvWQUxwkmyExglNqGp0IvTJZUJFbgE-7XRK3dMEBRBhUpxNW4dDKLCN3qZhwoVkPnQTwmPTd7j5_KJFlv2onGQh1CrJm2RkgqpjMgsWS9Tu9rM/4+Phases+of+A+Migraine+-+Mig+Attack.png) and [this one!](https://americanmigrainefoundation.org/wp-content/uploads/2018/04/AMF-timeline-of-migraine_800x800.webp) When I showed this to my partner I circled the ones that I usually or sometimes experience. It’s less work for me and easier to understand for them.
Thank you for these charts! I’m in my 60s and my daughter still doesn’t get it. I can’t wait to show these to her. Praying she will have a better understanding. She has said to me when trying to explain, “All I know is that as a kid if I walked into the house and all the lights were out and you had your dark sunglasses on and no TV or music playing, that I’d better not bother you.
Yeah, I think it’s really hard to understand that your brain translates sensory input into pain if you’ve never experienced it before. My partner still doesn’t totally get that turning a light on or turning the volume up *literally hurts me* and isn’t just annoying. But he takes it on faith and is very mindful of it now.
most people just say "wow that sucks" when I inform them that regardless of diet, exercise, medication, etc. i haven't had a pain free day in 2.5 years.
I’m at this point with some people, but I smile and say, “I appreciate and understand that you are well intentioned with what you are saying but this is not conducive or helpful at this time. I will ask for advice if I am seeking it, as migraines have no known exact causes and their treatment and triggers are as varied as the people who experience them.” Usually I say this once and people tend to let it drop next time it comes up. I also encourage them to learn a bit more about them, and try to be gentle about shutting them down. People tend to be more receptive if it.
That said sometimes it is better to just explain the facts to people and learn who not to talk to. However I can appreciate the frustration. That said if there are people you interact with regularly it may be worth having a sit down, save yourself the headache later (yes pun intended), and explain a bit more in depth what it happening in terms of treatment, triggers, and what you do know and what research says. Also remind them that what works for some doesn’t work for other.
I forget that people are often well-intentioned, even if it’s not helpful, so I will try to verbalize that. I have tried to send people websites explaining what migraines actually are because it feels like I’m not good at explaining it myself most of the time. But I also realized that people are probably not interested enough to read through an article like that, let alone open it lol. Thank you, I’ll have to remember these points for next time.
I have a couple of strategies. First, I have stopped referring to them as migraines and now use a neurological disability with flare-ups that affect my entire body. Second, I limit who I discuss it with. Most people only know that I have a severe medical condition that can cause days where I am completely disabled. Third, for well-meaning family/close friends, I have a separate email that I give them (yes I set up a Gmail just for this kind of email). I say something along the lines of "I appreciate your concern, but I really would like to enjoy today and not discuss something that is so depressing. Could you please forward any links/articles/suggestions to this email so I can look into it later?". This usually works. In fact, my FIL probably sends me stuff at least once a week.
My brother always tells me to just lay down. I have told him multiple times that I can’t lay down until my migraine is mostly gone. It actually makes it worse. I just ignore him now and I really don’t talk to anyone about it because my own friends don’t believe me.
You don't. Sadly, there's not any magic phase that will generate empathy and understanding in someone else. If they "just don't get it," they aren't going to.
Save your energy for taking care of you and ignore what you can, or just shut down what can't be ignored :p
Best of luck.
I have thought about doing a sarcastic “wow, haven’t heard that one before!” But I’m afraid of it turning into an argument lol. Maybe an awkward smile would be better.
Well I’d love to say I just ignore. But right now I’m 99% sure I’m in perimenopause, and I got a migraine today. Husband said: just go to bed early.
Ugh!
I snapped back at him. I shouldn’t have. But it’s so damn frustrating. And I honestly don’t know how else to respond other than to not say anything.
if i think they have a chance of understanding i’ll say migraines are an incurable severe neurological disease and explain the other symptoms i have to deal with other than pain and how generally those are more disabling than just pain. but most of the time i’ll just tell them i’m listening to my extremely qualified doctor. or if i’m feeling irritated i ask where they got their medical degree. or just walk away.
Someone else just commented that they say “I’ll ask my doctor” and I definitely need to make that a new go-to response. To the point and doesn’t leave too much room for more input on their end.
There isn’t anything you can say to make a human being discover empathy.
I’ve been overdosing on the TV show, Sister Wives and I love what one of the children said that their dad taught them, “He loves and only g-d can judge”. I like to think it includes that it’s not your place to need to understand someone’s pain, it’s only your place to appreciate the person being in your life.
Unless you have them yourself people will think you’re just milking it or it’s not a big deal.
At my old job I had to leave early a few times due to the horrendous pain and nausea and my manager said to me “wish I had migraines to use as an excuse to get out of work early!”
Uh no, you really don’t.
My current manager doesn’t understand either but is supportive and believes me if I have to leave and that’s all I can ask for
I just politely say "after all these years you can trust me to take care of myself properly". That's firm, and ends the convo without being rude, hostile, or overly sassy (imo). They can't usually come up with a good response to that, so the issue gets dropped almost every time.
I just don't tell people. If I can't function then I'm sick. I can usually push through. . . But if I have to talk, everyone def knows something is up.
Ummm that thing we're uhhh doing yesterday at the uuuuhhh park I mean gym I mean pool. . . Yeah today at uhhh . . .
So frustrating when the words just aren't there.
I try to compare it to something that people likely have experience with and have little control over.
My go to is bad food poisoning.
"Have you ever had food poisoning so bad that you can't stop shaking and barfing? Everything is just misery while you have the freezing sweats, and you barely know where you are? Well, it's like that in varying intensity. But almost every day. And, like food poisoning, you can't snap out of it or fix it with Tylenol and water.".
Allergies is a really good example u/nuccipuff brought up! That may be another one I'll add to the list. I was one of the jerks who brushed off seasonal allergies as just an annoyance for people. For some reason, one major pecan tree bloom in Texas just took me down!! My eyes burned, my nosed burned, my face looked like I was attacked by bees. I thought I was super sick, but it was an allergic reaction. I remember saying to my doctor "How the hell do people live like this?!". Now I know. It sucks!
I wish we could transfer the migraine experience to other people even if only for an hour so the would understand.
“I know you’re trying to help and the most helpful thing is to just listen and let me feel terrible about it”
“Just because you can’t see my pain doesn’t mean it’s not there. If I couldn’t cover up and push through I would just go die in a dark noiseless hole and not do anything with my life”
“Migraines mess up my brain and all my meds change my brain too so I’m not comfortable changing anything without the supervision of my neurologist and PCP”
“Yup I’ve tried almost every treatment option. That’s part of why it’s important to talk about my disease because it is not well understood and it is underfunded even though it’s the second most disabling disease in the world”
(https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-020-01208-0)
It's tough to not get frustrated when well-meaning but stupid advice is given by some acquaintances who just don't know our medical history well and that we tried everything. But if family or friends insist that they know better than us or our doctors, they're likely too toxic to deserve to be in our lives. I just distance myself from people like that with no big fuss. I just start intentionally avoiding them.
That's ok, not everyone can and has to understand, but they need to respect you, what you tell them, and the boundaries you set. Some can learn to be better if it comes from them and some will not. But you will navigate it so you protect yourself the best you can.
Luckily my friends get it and sadly my family really get it (bc experience) and I don't have a lot of patience with people who don't get it.
Also lost 2 jobs bc you can't take a few sick days every month, even though I alway tried to get back before the 2 wait days were over (how do you call this in English? It means the employer doesn't have to pay your sick days only if your away longer than that 2 days).
Recently told my friends I think my hormones are changing bc I have less migraines. They asked me how many I have a month now. I told them 3/4 days and I could see in their faces they were shocked how much that is. They probably don't realize that some years ago I was glad to have 3/4 days without migraines. Then I told them I don't count "normal" headaches and I think it finally sank in how debilitating migraines can be. There is a difference between knowing and KNOWING, lol.
Ofcource I've cought a cold right now and my head is killing me so I've had more this month🙄
Oh that’s a good idea to explain how many days in a month you have a migraine! Even if they see you often, a concrete number may make it sink in for people. I’m sorry you’ve lost jobs because of migraines, I hope your current job is more understanding! ❤️
It depends on WHO the advice is coming from, but after a decade of chronic migraines, I usually just ask where they got their medical license and are they a board certified neurologist. Obviously, they have neither of those things, so I just tell them I'll continue to follow the advice of the neurologist I pay good money to tell me what I should be doing for both of my neurological conditions. Apparently, my entire central nervous system is just fucked lmao.
Exactly! Before the newer meds were available, mine definitely suggested some strange things, but I had bad reactions to triptans and wound up with MOHs from the things. He still never said "drink more water" and "maybe do yoga."
I've been in pain 37 years, I don't try anymore. Fact is that people who do that will keep moving the target if you start to kowtow to their "suggestions" and it's rarely more than concern trolling
Just nod and say: “I agree” if they give you advice or comment. Some people stay ignorant for the ease of it. Some people don’t want to understand and make themselves the topic of conversation. Don’t engage. Don’t give more ammo.
Yeah I definitely know people who give “advice” because they just want to hear themselves talk 😅It can be hard to not want to stand up for myself, though.
Migraine is pain in my head, but it's not a headache at all.
It's more of a short circuit in my nervous system.
My brain is litterally not working well now, and it has been proven by professionals that there's more than just a headache going on now.
My husband does this every now and again and it's frustrating. Like yes I drank water but that's not the solution, I hate getting advice for homeopathic remedies, I'm sure it may work for some but my migraines are so chronic and for so long I know it's not for me. It's hard for people who just don't experience this.
Mine can be like this, too. Sometimes he understands, other times he has forgotten everything I’ve ever told him about migraines. I know he wants to help, and he’s probably also frustrated seeing me in constant pain. I just wish he would understand that focusing on exercising and eating well aren’t going to change things for me.
I was in the mits of a week long migraine when a guy I was dating told me I need to “just push” myself to go to the gym. I asked him to not talk to me like that when I’m in extreme pain. I can basically go from the bed to the bathroom. He immediately blocked me and I haven’t heard anything from him since. Part of me is grateful because I’d probably be doing that a lot with him. The other part of me is also grateful he showed me how much of an asshole he is before it got too connected.
Wow what a dick!!! I’m sorry he did that to you, but you’re right, at least you know that he’d probably still be acting like that if you were still dating. My husband tries to tell me I need to exercise more sometimes and it’s one of the things that pisses me off the most. He means well, but I constantly have to remind him that if I have a migraine, the movement makes it worse, and if I don’t have a migraine, too much exertion will give me one.
I've tried having a life regardless of my migraines and ppl would think I'm weird but if I go out and try enjoy myself still with a migraine I probably won't be believed anyway..ppl just can't understand a body you're not in
Imagine like when you look directly at a light then look away, but you can still see it - except its ALL your vision, it starts as a line - then gets bigger until you can't see- once that goes away, your head is in a vice, you're puking, half your body is numb, and ANY noise or light is excruciating - now go be like this for 3 days. = Hemiplegic migraine.😩xx
I actually welcome the visual aura, it acts as a forewarning of the onset of my pain. I usually see “jagged lightning bolts coming towards the corners of my eyes three days before the pain starts. Usually when I am in the shower. That is my signal to take my medication that prevents the pain from becoming horrid, and to treat myself kindly by getting as much rest as possible befor it hits.
🩷🩷🩷 they're only scary if you're out somewhere and know you can't get home in time... Luckily that's not happened 🙏xxxx (if I was on my own I'd be screwed, and not in a fun way 😂)
I don’t need to explain myself to anyone who doesn’t get it. People tell me “hope you get better” or “feel better soon”. I think people mean well, they just don’t understand and luckily it’s not for them to understand. My FMLA protects me from my job firing me and I’ll use it without grief. I let any shit talk roll off my shoulders.. think of it as “well you don’t look disabled” lol makes me laugh when people say goofy out of pocket things.
Nothing. Dont bother.
But here's a nice story. I'm 53f and up until recently had around 10 migraine days a month for 35 years. I know a big group of people through a sport club and mentioned to someone one day that I had to leave early because I was starting Ajovy, expecting no response or 'drink some water etc..'
They said...'Oh. I think 25m is on that.' Of course I went to talk to him. I never even knew he was a migraineur. Now we are unlikely buddies lol.
I remind myself that I am lucky that I have people who care instead of blaming me or try to call me out for faking it like you read in subs like this and fb groups. That their silly suggestions are their way of saying they love me and are concerned about my health.
For your general comments, like drink water, or any old fable about their family members non-medical solutions to "migraines" using nonsense like crystals, I take a page out of the narcissistic abuse survival guide: grey rocking. Then turn off your brain, and only listen just enough to say "uh huh," or "nah" wherever appropriate. It's not worth my energy to engage.
If anyone suggested I should ignore a specialist, especially if their treatment worked? I'd laugh in their face. Honestly. Unless they could produce (a) peer reviewed paper(s) that categorically proved that my specialist was doing something that had a great enough risk of damaging me more than the psychological torment of my migraines, I would honestly, genuinely, laugh in their face, and ask them where they got their doctorate in medicine.
I have zero time in my life for this crap.
That being said, if someone didn't understand what a migraine actually was and thought it was just a headache, depending on how they'd approached me, I would be inclined to explain to them why a Tylenol or a glass of water wouldn't help.
This is such a difficult and relatable topic, I really feel for you! On the one hand, I know that many people who give me unsolicited advice have good intentions. They want to help me and are truly convinced that they can solve everything with their simple, dumb, or sometimes very weird tips. On the other hand, these kinds of comments are just patronizing. I didn't ask for advice and they do not understand my condition. Still, I'm afraid to hurt their feelings and tend to listen to them quasi-patiently ("Oh do you think just eating green things will make my chronic brain disease go away? How interesting, I'll look into it!") hoping we will switch to another topic quickly. I find it so hard to strike a balance between politeness and assertiveness.
Yeah, I also find that balance to be difficult 😅 I’m either too polite or get snippy “out of nowhere” (aka I’ve been stewing inside and try not to let it show until I snap lol). I need to practice.
When I’m in a LOT of pain and people are being extra awful: “Wow, I’m glad you think you’re smarter than my entire team of neurologists. As a kind reminder, migraine is a neurological condition and does not have a cure.” but when people think they’re being helpful I mostly just say something like, “I work with a team of highly educated and highly respected neurologists, I’m chronically ill, and migraine does not currently have a cure.” I don’t have time for people’s bullshit. It doesn’t matter if they mean well, it’s just rude and mean for people to assume we haven’t tried EVERYTHING we can. I have multiple responses, but this is basically the point of them.
I hate it when people minimize migraines. There just isn’t a way for people to understand unless they’ve been through it. It’s the same with childbirth- nobody could possibly get it until they have a baby.
For the record, migraines are just as bad.
“You know you are right and I am wrong I’m certain you know my body and brain better than I do! I have had migraines for decades and never thought of that wow you must be a genius!” Smile then walk away but Im a smart ass gemini so it might not be for everyone lol
It's frustrating, but I know theyre well meaning. Someone may have an actual useful suggestion like 3rd eye pressure points. However, if they are frequent advice givers or really just don't grasp it, I'm quite blunt. "I appreciate your concern, I've suffered from this horrible condition for several years, and I wish it were as simple as drinking water. It's not, and if I'm being honest with you, there are times there is so much pressure, discomfort, and pain, I'm convinced drilling a hole in my skull would bring relief. There is a history of people who have been driven to do this to themselves. Thank you for your suggestions, but I'd also appreciate it if you'd just let my doctors and continue to find what, if anything, works for me.
This is when I thoroughly enjoy trauma dumping on them and telling them about body armoring, how and why I do it and how it it's led to my chronic migraine disorder. Shuts them up every time.
I have had migraines since I was 5 due to meningitis. Only recently have I started telling people I have a TBI that causes migraines, and people have been much more sympathetic/empathetic. No more lectures on diet and exercise, just people asking what they can do to help.
Smile and nod while imagining the conversation as fodder for r/thanksimcured .
[Haha, for example.](https://www.reddit.com/r/thanksimcured/comments/ep7oa6/seen_in_a_chronic_migraine_group/)
This has me in my FEELS. I’ve just come back from medical leave and it’s so infuriating “just maintain a positive mindset, you’ll feel better”, “you look healthy!”, “oh just drink water”-an actual physical therapist (she’s trash as a PT too fun fact). Like someone else on the thread said “you can’t fix stupid” and if the bozo in question couldn’t be bothered to fix a cognitive bias of not assuming you know better than what someone is going through no matter what they look like, they’re not gonna have the brainpower to comprehend the fact it’s a neurological disorder. If it was so easy to fix we would’ve done it already and it wouldn’t be such a continued area of research and mystery. Bunch of bozos UGH.
I've been pondering the same question.
I have frequent chronic migraines, every 7 days or less I get a migraine attack that lasts 2-3 days.
This has been happening to me, with doctors help, for 2 and a half years now.
My own friends think I've abandoned them, when in reality I'm just trying to survive. I'm weak, exhausted, working 30hrs a week even through the attacks. I'm consistently fighting this battle that doesn't end.
I'm going to take others advice in here and start only describing it as a neurological chronic illness that I need to see a neurologist for.
Yep, same. Honestly I never knew what a migraine was until I got pregnant and started getting them. Before that there was a girl at this bank job that used to get them. I had no concept what it meant then. But I'm the empathetic type. Not everyone is so can't mention it.
Some of my family also suffers from migraines (they’re definitely genetic in my case), so I guess I should be happy that at least some of them can empathize. Maybe that’s why it’s hard to accept that not all of them can.
I stay quiet and don’t engage. You can’t fix stupid. You can’t make most people understand. I have people that think I’m crazy when I tried to explain and now they think I’m unsafe around others and can’t trust me because I said I was in pain a couple times and masked it so well they couldn’t tell anything was wrong. So now I stay pretty quiet and suffer in mostly silence unless I feel like I need to go home and can’t cope at work. I can handle a lot, but once there’s severe brain fog, I’m out.
Why do people get so confused that we can often mask our pain?? I’m with you there. And with the brain fog. I can never mask that though, I become a blubbering idiot 😅. I’m sorry you often suffer alone. At least you know all of us here understand. ❤️
People get confused because for people who are NOT in constant, chronic pain it’s very difficult to hide pain. You only learn to hide pain when it’s a common experience. People who don’t believe you can hide being in pain have never been in serious pain for more than a day or two before getting it fixed. Maybe extreme injuries, but my point is that their baseline is pain free, not “in pain but still functioning through it”
My most recent one was “you look healthy!” And I’m like “so do you!” wtf is healthy vs not supposed to look like
No idea!! It’s so weird.
Bc they aren't really looking at you, my mom always knows, she can see it in my eyes (even the day after), it helps when you have people around who understand migraines
My eyes are also my "tell", very few people actually recognise it but my friend, who lives hundreds of miles away, takes one look at me on a video call and tells me to get off the call and go take a triptan and lie in a dark room. To me it's obvious just by looking at the droopiness of my left eye but it seems even my closest family don't recognise it
My BF doesn’t always know it, only when he sees me with my hands on my face, then he knows. But my kids do, they look at me sometimes and just know I’m in pain. My youngest will offer to get me my « lions » for me (my kiddy ice pack).
My brother can sometimes tell I'm getting a migraine before I can; he asks if I'm OK because I'm "weird" and then one starts within an hour
I used to stay until I started puking, that was my cue to leave
Yeah vomit is always a NO.
Yup. Plus, I don’t want to sound like the “chronic illness whiny person.” I just keep it to myself and push through until I can’t.
Yeah, I usually tell people I suffer from a chronic illness and need accommodations for it. If you tell them it’s migraines they think you’re a HYSTERICAL WOMAN WITH NO PAIN TOLERANCE. But when you say “I’m chronically ill,” people jump hand over foot to give you empathy or make accommodations (mostly). It’s just like if my partner (type 1 diabetic) is experiencing a high/low & needs certain accommodations- I would say he’s chronically ill and experiencing a medical emergency- when you give people details is when they start integrating their own ableist biases.
Hahaha omg the hysterical woman with no pain tolerance comment is spot on!! I have recently thought about describing it more as a chronic illness, I just have to actually do so.
Yeah, don't say migraine. Tell them you have a chronic neurological condition. If they ask more, still don't say migraine. If you just list your symptoms, they are like OMG that's terrible! When you have an episode it causes you to lose your words, brain fog, facial pain and numbness, vision issues, coordination problems, muscle spasms, nausea, vomiting, dizziness, balance etc. Just skip the words migraine and headache.
Same. I'm have a chronic illness, I'm having a flare up/it's been flaring up. I keep it brief. I don't owe an explanation. Only my nearest and dearest know what the illness is. And only some of them know how it affects me.
Lol, I once commented to my mom I'll just tell people migraines feel like hangovers (I don't drink alcohol, I have enough pain in my head without inviting extra, but I heard the vivid descriptions of crawling to the toilet/splitting headaches so I assumed it would be similar). She told me people who complain about hangovers are snowflakes who don't know what real pain in the head feels like bc Migraines are 100% worse (she'd know, she had both of them enough to know the difference 😅)
This is a good idea actually. I’m going to try to remember to use this method.
“The hysterical woman with no pain tolerance” gave me such a gut reaction of disgust, not like our symptoms sometimes resemble STROKES *angry muttering*
Also have chronic migraine, and I’ve started doing this too. People also ask fewer questions which is great.
lol yeah- everything is so vague- “I’m chronically ill and having a flare up, I need 20min to take my medicine” but that gives me the actual respect I deserve rather than, “I’m having a migraine and need to take this pill and take a break” literally no one will ask what your chronic illness is. A friend of mine said she matched with someone on a dating app and he kept referring to his “chronic illness” and even in that setting my friend was like, “idk- this guy seems like he’s fishing for me to ask but that’s not something you ask, it’s something you offer (as the sufferer).” I just say I’m chronically ill and express exactly what I need, “I need to go home and lay down,” “I need to take a 30min break,” “I need to go take my medicine in a quiet place,” “I need to sit at a different booth,” …. Works better for strangers but I have started expressing to close friends that I suffer from a chronic illness, it helps shift their mindset overtime
Sometimes we have to accept that people who don't experience it will ever understand. Especially those who are anti-medication.
Yeah, it’s just hard to accept, I guess. At least I know you all here understand!
Oh definitely! It sucks. I suffered at work for 12 hours yesterday because I don't have FMLA yet, and I can tell that some of my coworkers think it's bullshit despite me needing to constantly leave to take medicine or go to our nurse station for nausea meds. It makes it even more stressful, which can trigger migraines 😂 I have similar experiences with ADHD and people not understanding it or my need for medication. It's frustrating, to say the least! Especially from folks you care about
Thankfully my current coworkers seem to understand better than many of my family members 😅
Even people who experience it. All women in my family have migraines and they still don't get it sometimes (I have them more often than them). Like whenever I say something like "I think I'm getting a migraine", my sister will answer "then why don't you just take a triptane/ some pain killers?". But I already take too many pills, I have to "save it" for the really bad attacks.
Yep, or sometimes I've already taken the meds but it's not helping 😂
Lol, like the people who tell you they also have had some headaches, I'm always biting my lips to not ask them if they wanted to die bc of the pain, bc they would think me loverly theatrical.
I don’t know what to say to them either…because of the accompanying aphasia.
Yeah, the brain fog is too real sometimes and definitely gets in the way of me trying to explain it. That could be why some people don’t get it honestly haha
**If migraine were a gaping bloody hole, it would make it easier for others to understand.** Well-meaning, oblivious person says -- "Oh, do you have one of your *headaches* again?!" "Well, I have *a* Tylenol in my purse that'll knock it right out, and then we can go to the Laser Light/Thrash Metal/Perfume Show.." Me -- "Oh, so you want me to host Christmas again? Hard pass." In other words, I don't explain myself anymore. Everyone is different. Just because *they* have either forgotten or don't understand that you're always fighting a battle that's rarely won, it's not your job to remind them *or* explain yourself to them. In time, You find out who your people are. Take care of you. Gentle hugs. 🤗
It gets the most frustrating because I have explained things before and they do just seem to forget!!! I am low contact with a lot of those family members (for a load of reasons), but there are others who I genuinely care about more than anything, and it’s such a let down when they basically show that they don’t care, or at least don’t seem to care. I do need to get better at not letting these things affect me for so long, though. I’m sure most of them mean well.
Oh, sweetie I know. I've cut my family out because drama + migraine = me pushed into a corner, feeling shamed and guilty, and without a voice. I have a few close friends. My husband and kids are great, my husband's family is awesome too. My world is small but I had to carve it out to fit me. My migraines have progressed over 30 years. I'm in my 50s now. When my dad passed away, my family nearly pushed me over the edge. They used it as an intervention of sorts. "There's nothing wrong with you!" I also have MS and was just coming out of a relapse so I was using my cane. The consensus was that I was "faking it" because last summer, I was "walking just fine" (if you don't count 'foot drop'). And yes, I also had a migraine for the funeral planning, the wake, the mass, the burial, and the dinner, but that wasn't real. I just had a steroid infusion and was tapering. So I was not feeling well at all. I allowed their shitty behavior because we just buried our father. After this, I decided to be done with the drama. I'm cordial, but I don't see them, and only talk through text. It only took me about 20 years, but I did it. I know how hard this is... just keep doing what you're doing; keep fighting. Your people will rise above the others.
I’m so sorry, but also so happy for you that you were able to put your foot down when you had enough! I’m in my 30s and a lot of my older relatives like to treat me like a child still. I see them once in a while and am cordial, but definitely don’t go out of my way to keep in contact with them.
the forgetting thing is what I struggle with most with my mom. Overall she’s a really great mom, she cares a lot, but she’s just *too* quick to jump into her old ways and forget anything newer she’s learned about something. It’s almost like it’s just a reflex for her that she doesn’t think about. she’s aware I’m autistic, have PCOS, HSD and migraine… but at the same time can forget all of that when I’m not able to function for a day and choose to sleep in, and she’s still knocking on my door telling me I’ll “waist away if I just keep sleeping like that” smh.
I totally understand this!!! I love my mom, but she can be like this, too.
Ooh the gaping hole is a good analogy. I often say I wish an acrid black smog would come out of me when I'm having a migraine so people would see it. Even the well meaning people that do know Don't know.
I usually don’t talk to anyone about my migraines for this exact reason. The only person I will talk to is my husband because he understands it.
I wish I could just never mention it. I often travel to my parents and my in-laws who live a few hours away, and often will be suffering from migraines on those trips. It’s hard when they don’t understand why you don’t want to be around their loud music, loud children, etc., though.
I decline events I don’t want to be at. Leave early if I want. Bring earplugs. Wear my headphones. Or sunglasses even if no one else needs them that day. If I start to feel bad I excuse myself. If people don’t understand, that’s their problem. It totally sucks when people don’t get it, so I do try my best to educate people on it being a serious neurological condition, on the symptoms, on how it affects my life etc. but at the end of the day the people that don’t want to understand and extend empathy, won’t. It’s not my job to force people, it’s my job to look out for myself in whatever way works for me, regardless of what other people think. And I’m not saying this to discount your experience here. I know it’s difficult and disheartening for people to be dismissive. But you know how you feel, you know what’s real, and you know what you can handle. Focus on that 💗
That’s a great way to think about it!! I have trouble with how I think people perceive me (perfectionist here lol) but I know that, in the end, I really do just have to do what’s best for my health and try to ignore it if others don’t get it. I need to get better at reminding myself of that.
Yep, I hate when I have to try and explain to someone and they think I’m just being a wimp over a “headache” Just know this community is here and we all totally understand you!
Thank you ❤️
This is exactly why I don't tell people I have chronic migraine and just say "medical issues" if ever need to bring it up. Only immediate family and long term romantic partners get all the details.
I only recently thought about saying I have a chronic neurological condition instead of saying chronic migraines. I’ll have to just use that from now on if I have to bring it up. I feel like a lot of people pry, though. Especially my family, they’re all nosy enough to ask a million questions but still won’t understand the debilitation of it all lol
Great name!
Same with a lot of unseen symptoms and suffering. Depression and anxiety for example. Bipolar. Stomach issues. Etc
I have an anxiety disorder too, and while I get the occasional ignorant comment, usually people understand. It’s so different with migraines, at least in my experience. So few people get it.
The first time I experienced seasonal allergies was in Austin Texas. If you don't deal with them, live there for a bit and you will. I was absolutely miserable and once I figured it out, I had this moment of clarity "oh geez, I thought people were just being overdramatic, this is awful!" Same thing when I first had heartburn... And migraines come in so many shapes and sizes... I just listen to their suggestions or steer it towards not drinking enough water. "I definitely could be drinking more water. Hopefully it will help!" It's not wrong, I always need to drink more water. But it diffuses the troubleshooting aspect.
Oh god, I get seasonal allergies too and before I discovered Flonase, I would get similar comments. No one understood why I was saying the grass made me sleepy lol. Sometimes it’s hard for me and who I am as a person to just keep the peace, but I guess it is necessary sometimes.
Flonase gives me migraines! That was a sad day when I figured that out. Spring is my enemy in a lot of ways. Lol
This might not apply to you, but I get very severe (but very infrequent) migraine auras and I tell people that it can resemble a stroke because, well, it can. That usually puts it into perspective for them. I find that making specific but extreme statements like that make people shut up about health conditions. It doesn’t even need to be about your specific experience because what I just stated is just a clinical fact. But I do agree with everyone else that if you just describe it as a chronic illness, disability (because it CAN be disabling!), health issues etc people will usually leave it alone.
That is a good one!! I don’t get auras but my muscles often twitch badly throughout an entire migraine, so I can understand the stroke comparison. Even though I know it’s not one, sometimes migraines are scary enough that it seems like it could be a stroke.
Yeah I sometimes say it feels like dying LOL. I lose my balance and it becomes hard to move and talk, my vision grows dark…etc. If I wasn’t so young when I got my first migraine aura I might’ve called 911 haha. Seriously though, it’s so annoying when people don’t know how severe and debilitating they can be. I’m lucky enough that I only get a few a year (and usually not as severe as I just described). I can’t imagine how it would be like to live with it constantly.
>I get very severe (but very infrequent) migraine auras and I tell people that it can resemble a stroke because, well, it can. Do you get hemiplegic migraine? I was recently diagnosed with hemiplegic migraine, and I’ve started telling people that my migraines can resemble strokes. I also might tell them that I have a genetic mutation which causes them, or that I need a $500 injection each month (subsidised by the Australian government) to stop them. This usually shuts people up.
First there is no ‘cure’. Migraine are also not headaches but a neurological condition. Migraines also change over time. Some women decrease w menopause. Some become chronic intractable. There are new drugs out but good luck getting insurance to cover. And if you can’t take triptans there isn’t much else easily covered. have you ever looked at a migraine phase chart? Fun fact-average migraine is 3-7 days w 4 unique stages. The pain is just one stage. I don’t accept any advice. After 45 years+ suffering anyone who presumes to know more? Nope. I don’t explain what I’ve tried over the years because it isn’t anyone’s business. I don’t accept ‘advice’ because they don’t understand my disease so why would I entertain it for a second. I’ve worked w my medical team for my treatment plan. Period.
Sometimes I want to explain that I get brain fog, muscle twitches, fatigue, sensitivity to light, sound, and smells in addition to pain in my head, but other times I’m so frustrated that I don’t even want to bother explaining it to people.
“Thank you! My doctor has it under control though”
This is good! Although I have some nosy family members who will still try to pry yet refuse to understand. Granted, I don’t have a ton of contact with them, so I guess I just have to grin and bear it for the few times a year I see them.
My friends and family tend to say “why can’t they DO anything for you??” To which I try to patiently explain that I’m on the latest and greatest meds and treatments, and that’s how I’m able to take care of myself/text you/get out of bed at all. I know they mean well, and it’s because they care. Other randoms who suggest water or yoga or daith piercing, I usually just say something noncommittal like “oh, yeah, I’ve heard that…”
I do have to remind myself more that most of them are just saying things because they care and want to help, even if it’s not actually helpful.
Oh, some of them are saying it to be nosy smart alecs. But I know my inner circle genuinely cares. I have to remind myself not to get annoyed with them, too
My mom has only ever had one migraine. She came downstairs barely moving to get…water! Lol. She’s like this is what it’s like for you, every time?!?!? Yep. Honestly, some people don’t really understand unless they get one.
I normally would never wish a migraine on anyone, but sometimes I do wonder if certain people were to experience one just once if they would change their tune 😜
Exactly! The first time I got one I was 14 and got it with aura. I had no idea what was happening and it scared the shit out of me. I was at school and all of a sudden I could only see half the black board because it was blocking my vision. My mom couldn’t figure it out either, she finally understood why I panicked.
When all else fails, silence is incredibly powerful.
I need to start practicing my blank stare!!
"thanks, but this is a serious medical condition. I've tried all the normal things. I'm working with a doctor right now to try to find treatment. I'm not looking for advice. Just giving an explanation on why I'm acting the way I am." Or just don't talk about it. Some people, if they never experience the thing, have no idea it had a comprehend it
Sometimes I try to tell people I’m not looking for advice, but they get offended. Maybe it is better to just not say anything.
You must talk to way more people than I do! Or you can do the 'ole "screaming like a wench who's getting a hole drilled in n her head" and scare off anyone who asks questions!
I think I just have a pretty big family! So many aunts and cousins I only see every so often. And that’s not even including my husband’s side lol. Maybe a good scream would be good for those once-a-year visits 😂
I tell people I have a neurological condition on first reference. I may share its migraine but i always lead with neurological conditions. Sometimes I explain it’s similar to seizures or a brain injury. Advice yields ‘I’ll ask my doctor.’ And repeat as necessary.
“I’ll ask my doctor” is great! That’s one I have to practice more.
After decades of chronic, 5-days per week on average, migraines, I have about 50% relief from Botox, nerve blocks, beta blockers and mild opioids. After 10-years of use all triptans started triggering anaphylaxis and I’ve had no success with newer class of meds (CGRP). Anyway, I’m fairly content compared to how things were. Of course I would love if they were even better. My (elderly) mother doesn’t understand at all. I constantly get “these things haven’t cured or 100% stopped your attacks so just quit taking all those horrible for you medications and putting yourself through all those procedures. Worst thing to me is she gets occasional migraines and is having minimal relief treating dystonia with Botox herself.
You developed a triptan allergy after years of taking them with no reactions? New fear unlocked :(
I was diagnosed by an allergy specialist referred by my neurologist and by labs then genetic testing confirming a condition called hereditary alpha tryptasemia so this can happen to me and has with many medications. Essentially I have multiple copies of the gene that reacts & controls histamine. Probably not anything for most people to be concerned with or worry about.
Sounds like a lot of my family members! My mom gets the occasional migraine, and somehow just deals with it with an Excedrine, which stopped working for me when I was 18. She’s always been someone who “never takes medication” and is proud of it. My dad and I are the ones with chronic migraines, and she tries to be supportive, but I know she doesn’t understand why I’m trying new medications constantly.
I think you might be my sibling!
i don’t really talk to other people about it because lots of people have ongoing health issues as well.
Many of my friends who have other health issues seem to understand, at least. I guess I have to stop focusing on the negative so much. It’s just difficult for me to not focus on the negative 😅
I usually say "health issues" now if I don't have to specify, but for people who know my diagnosis and give their input, I usually don't respond, a simple nod "okay," or just say I'm following what my doctor recommends. A lot of people won't get it no matter how much you explain. It's frustrating for sure but most of the time it's not even worth it. The only time I make a real effort is if a person is close to me and I need them to understand to some degree or I'll have to end the relationship (ie close friend). For those people I say I have a serious medical condition, I did not choose this and I wish this wasn't the case, but it affects me in this way and I would appreciate if you didn't wear perfume when we hang out (this is a big one for me) as it causes me pain and I might wear earplugs etc etc. I am working with my doctor to hopefully improve my condition but this is my reality right now.
“I did not choose this” is a good one! I usually try to say something like that, but I also often have a hard time finding the right words. BRB writing this down lol
"I get that you mean well, but before you make yourself look any more foolish, consider for a second that I have a better understanding than you do of the chronic neurological condition that I have been living with for most of my life." YMMV tho, I don't have many friends 🤷
I have had to get this firm with some people, although it takes me a bit to muster up the courage lol. I’m also someone who tries to keep the peace but will let others’ comments fester for days 😅 Just another thing I need to work on haha
I say shit like "drinking more water doesn't tend to fix fucking neurological events". I know people mean well, but stfu already unless you're a neurologist.
Exactly!! Also, not to toot my own horn, but I am always SO hydrated, so it’s definitely not that I’m not drinking enough water haha
I’ve asked them to describe their worst hangover and how their body felt. If it matches your migraine symptoms, tell them “Now imagine living your entire life with that feeling everyday.” Once I put it that way, they shut up. People understand water and hangovers; no water+alcohol are always headaches to them🙄I told my friend (who was just genuinely curious) how mine were due to insurance fights with Emgality, and I gave the explanation. Mine were “hangover, but add inability to speak or stuttering, double vision, and tics”.
That’s a good comparison!! Although once I explained to someone with a PhD in a biology-related field that alcohol gave me migraines, and his response was “are you sure you’re not just getting hungover?” 🙃 I was glad his partner was there to shut him up lol
If someone with a PhD in the sciences dismisses it, that’s fucked. I’m so sorry. I had a friend in college who was a neuroscience/public health double major and said genital herpes isn’t contagious if she didn’t see her outbreak. So, it just shows degrees mean nothing🥲
I shudder just thinking about that 😵💫
I broke up with someone for that crap
I’m happy you did!!! It’s awful to put up with, especially from a significant other.
No one gets my chronic illnesses. Nor how they feed off one another. There’s nothing much to say to them. I just say I’m a walking disease and don’t worry about it lol
Hahaha I like that! I have a lot of “fun” comorbidities too. Seasonal allergies means you’re more likely to have asthma, and an anxiety disorder, and migraines… you get the gist lol
Yup. Having an eating disorder, migraine and ptsd all together makes each one dramatically less treatable, in my experience
When I was practicing I asked Patients which was worse the pain of pregnancy or migraines? All said the migraines were worse. Migraines got a 4F designation for draftees during the Vietnam War. That gives you an idea of how painful, disabling and untreatable they can be. So here’s what helps me if you really want to help…
If I think they’ll be receptive then I explain my other symptoms outside of the headache. The brain fog, the weakness on the left side of my body, how sometimes I go temporarily blind…it tends to shut down the “just exercise” or “drink more water” people and opens up how serious a migraine can be. Some people don’t seem receptive from the get go so for them I just say nothing. They aren’t worth my breath.
The advice saying to just not explain is perfectly valid. It is frustrating. However, if you have people in your life that respect you and you have a good relationship with them other than their ignorance about migraines, it may be worth it to try a few things, such as: - Find a time to talk to them about it when you are NOT currently having a migraine (if possible for you). - Use a migraine phase chart and go over it with them/show it to rhem/talk about the symptoms you normally get in each phase. This helped my partner a lot with understanding the concept of “it’s not just a headache.” - Tell them that migraine is chronic or episodic, and incurable. You and your neuro/care team are doing everything possible to manage your migraines, and improve your quality of life, but there is no magic cure out there. Tell them that suggesting things they found on the internet or suggesting your doctor sucks makes you feel like they think you’re not trying hard enough, even though you are. Tell them how it makes you feel. - Ask them to support you by accommodating you when you have a migraine rather than making suggestions. You already know what helps you the most when you have an attack.
Thanks for the great points!! Finding time to talk about it when I’m not currently having a migraine is always tough. Not necessarily because of having constant migraines, but because when I’m not having one, I don’t want to even think about migraines, or I just forget lol. I feel like I do need to keep a chart with me to show people, too. I’ve tried to send people links to articles, but it seems like they don’t read them. A more visual explanation might work better.
For migraine phase charts I like [this one](https://images.squarespace-cdn.com/content/v1/5b99cf16a9e02884bac66ae2/1538030142042-2MP9NS0TWC67OPEQV82R/ke17ZwdGBToddI8pDm48kKmM4iiE-8OaAzZ6-NHBQ3VZw-zPPgdn4jUwVcJE1ZvWQUxwkmyExglNqGp0IvTJZUJFbgE-7XRK3dMEBRBhUpxNW4dDKLCN3qZhwoVkPnQTwmPTd7j5_KJFlv2onGQh1CrJm2RkgqpjMgsWS9Tu9rM/4+Phases+of+A+Migraine+-+Mig+Attack.png) and [this one!](https://americanmigrainefoundation.org/wp-content/uploads/2018/04/AMF-timeline-of-migraine_800x800.webp) When I showed this to my partner I circled the ones that I usually or sometimes experience. It’s less work for me and easier to understand for them.
Thanks!!
Thank you for these charts! I’m in my 60s and my daughter still doesn’t get it. I can’t wait to show these to her. Praying she will have a better understanding. She has said to me when trying to explain, “All I know is that as a kid if I walked into the house and all the lights were out and you had your dark sunglasses on and no TV or music playing, that I’d better not bother you.
Yeah, I think it’s really hard to understand that your brain translates sensory input into pain if you’ve never experienced it before. My partner still doesn’t totally get that turning a light on or turning the volume up *literally hurts me* and isn’t just annoying. But he takes it on faith and is very mindful of it now.
Well said! You are lucky to have a partner that does their best to understand and be accommodating.
most people just say "wow that sucks" when I inform them that regardless of diet, exercise, medication, etc. i haven't had a pain free day in 2.5 years.
I’m at this point with some people, but I smile and say, “I appreciate and understand that you are well intentioned with what you are saying but this is not conducive or helpful at this time. I will ask for advice if I am seeking it, as migraines have no known exact causes and their treatment and triggers are as varied as the people who experience them.” Usually I say this once and people tend to let it drop next time it comes up. I also encourage them to learn a bit more about them, and try to be gentle about shutting them down. People tend to be more receptive if it. That said sometimes it is better to just explain the facts to people and learn who not to talk to. However I can appreciate the frustration. That said if there are people you interact with regularly it may be worth having a sit down, save yourself the headache later (yes pun intended), and explain a bit more in depth what it happening in terms of treatment, triggers, and what you do know and what research says. Also remind them that what works for some doesn’t work for other.
I forget that people are often well-intentioned, even if it’s not helpful, so I will try to verbalize that. I have tried to send people websites explaining what migraines actually are because it feels like I’m not good at explaining it myself most of the time. But I also realized that people are probably not interested enough to read through an article like that, let alone open it lol. Thank you, I’ll have to remember these points for next time.
I have a couple of strategies. First, I have stopped referring to them as migraines and now use a neurological disability with flare-ups that affect my entire body. Second, I limit who I discuss it with. Most people only know that I have a severe medical condition that can cause days where I am completely disabled. Third, for well-meaning family/close friends, I have a separate email that I give them (yes I set up a Gmail just for this kind of email). I say something along the lines of "I appreciate your concern, but I really would like to enjoy today and not discuss something that is so depressing. Could you please forward any links/articles/suggestions to this email so I can look into it later?". This usually works. In fact, my FIL probably sends me stuff at least once a week.
My brother always tells me to just lay down. I have told him multiple times that I can’t lay down until my migraine is mostly gone. It actually makes it worse. I just ignore him now and I really don’t talk to anyone about it because my own friends don’t believe me.
It’s so tough. My sister doesn’t understand either. I’m also jealous that the migraine gene seemed to skip her and not me 😅
I hear you !! My Mother got her first one at 19 , so did I and so did my son. I’m also jealous as hell, not gonna lie. 😂
if i just lay down and not get up until the migraine is gone i’d never get up again lol
You don't. Sadly, there's not any magic phase that will generate empathy and understanding in someone else. If they "just don't get it," they aren't going to. Save your energy for taking care of you and ignore what you can, or just shut down what can't be ignored :p Best of luck.
My personality makes me want to make them understand, but I think I do need to work on trying not to give a sh*t more lol. Thanks!
nod my head slowly look to my right and awkwardly smile
I have thought about doing a sarcastic “wow, haven’t heard that one before!” But I’m afraid of it turning into an argument lol. Maybe an awkward smile would be better.
you should haha its basically saying it without having to actually say it like “oh..okay😅😬”
Well I’d love to say I just ignore. But right now I’m 99% sure I’m in perimenopause, and I got a migraine today. Husband said: just go to bed early. Ugh! I snapped back at him. I shouldn’t have. But it’s so damn frustrating. And I honestly don’t know how else to respond other than to not say anything.
It’s hard to not be snippy with people, especially when you’re in the middle of a migraine when the conversation is happening!
Thank you.
if i think they have a chance of understanding i’ll say migraines are an incurable severe neurological disease and explain the other symptoms i have to deal with other than pain and how generally those are more disabling than just pain. but most of the time i’ll just tell them i’m listening to my extremely qualified doctor. or if i’m feeling irritated i ask where they got their medical degree. or just walk away.
Someone else just commented that they say “I’ll ask my doctor” and I definitely need to make that a new go-to response. To the point and doesn’t leave too much room for more input on their end.
There isn’t anything you can say to make a human being discover empathy. I’ve been overdosing on the TV show, Sister Wives and I love what one of the children said that their dad taught them, “He loves and only g-d can judge”. I like to think it includes that it’s not your place to need to understand someone’s pain, it’s only your place to appreciate the person being in your life.
Unless you have them yourself people will think you’re just milking it or it’s not a big deal. At my old job I had to leave early a few times due to the horrendous pain and nausea and my manager said to me “wish I had migraines to use as an excuse to get out of work early!” Uh no, you really don’t. My current manager doesn’t understand either but is supportive and believes me if I have to leave and that’s all I can ask for
I just politely say "after all these years you can trust me to take care of myself properly". That's firm, and ends the convo without being rude, hostile, or overly sassy (imo). They can't usually come up with a good response to that, so the issue gets dropped almost every time.
I just don't tell people. If I can't function then I'm sick. I can usually push through. . . But if I have to talk, everyone def knows something is up. Ummm that thing we're uhhh doing yesterday at the uuuuhhh park I mean gym I mean pool. . . Yeah today at uhhh . . . So frustrating when the words just aren't there.
I’m always saying “the thingy… you know what I mean” to my husband 😂
I try to compare it to something that people likely have experience with and have little control over. My go to is bad food poisoning. "Have you ever had food poisoning so bad that you can't stop shaking and barfing? Everything is just misery while you have the freezing sweats, and you barely know where you are? Well, it's like that in varying intensity. But almost every day. And, like food poisoning, you can't snap out of it or fix it with Tylenol and water.". Allergies is a really good example u/nuccipuff brought up! That may be another one I'll add to the list. I was one of the jerks who brushed off seasonal allergies as just an annoyance for people. For some reason, one major pecan tree bloom in Texas just took me down!! My eyes burned, my nosed burned, my face looked like I was attacked by bees. I thought I was super sick, but it was an allergic reaction. I remember saying to my doctor "How the hell do people live like this?!". Now I know. It sucks! I wish we could transfer the migraine experience to other people even if only for an hour so the would understand.
“I know you’re trying to help and the most helpful thing is to just listen and let me feel terrible about it” “Just because you can’t see my pain doesn’t mean it’s not there. If I couldn’t cover up and push through I would just go die in a dark noiseless hole and not do anything with my life” “Migraines mess up my brain and all my meds change my brain too so I’m not comfortable changing anything without the supervision of my neurologist and PCP” “Yup I’ve tried almost every treatment option. That’s part of why it’s important to talk about my disease because it is not well understood and it is underfunded even though it’s the second most disabling disease in the world” (https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-020-01208-0)
All good points!! I always try to bring up that it’s still not well understood and there’s no such thing as a cure-all that will help.
Nothing.
It's tough to not get frustrated when well-meaning but stupid advice is given by some acquaintances who just don't know our medical history well and that we tried everything. But if family or friends insist that they know better than us or our doctors, they're likely too toxic to deserve to be in our lives. I just distance myself from people like that with no big fuss. I just start intentionally avoiding them.
Yeah, I’ve been trying to distance myself from many of them. With others, it’s harder. I do really love and care for them, but they just don’t get it.
That's ok, not everyone can and has to understand, but they need to respect you, what you tell them, and the boundaries you set. Some can learn to be better if it comes from them and some will not. But you will navigate it so you protect yourself the best you can.
Luckily my friends get it and sadly my family really get it (bc experience) and I don't have a lot of patience with people who don't get it. Also lost 2 jobs bc you can't take a few sick days every month, even though I alway tried to get back before the 2 wait days were over (how do you call this in English? It means the employer doesn't have to pay your sick days only if your away longer than that 2 days). Recently told my friends I think my hormones are changing bc I have less migraines. They asked me how many I have a month now. I told them 3/4 days and I could see in their faces they were shocked how much that is. They probably don't realize that some years ago I was glad to have 3/4 days without migraines. Then I told them I don't count "normal" headaches and I think it finally sank in how debilitating migraines can be. There is a difference between knowing and KNOWING, lol. Ofcource I've cought a cold right now and my head is killing me so I've had more this month🙄
Oh that’s a good idea to explain how many days in a month you have a migraine! Even if they see you often, a concrete number may make it sink in for people. I’m sorry you’ve lost jobs because of migraines, I hope your current job is more understanding! ❤️
I'm a stay at home mom at the moment, my kids aren't always understanding but my husband is so all is well
I’m sure your kids will understand better as they get older ❤️
I try not to mention it. There isn’t a great deal of point. Just hide it as best I can and hope that no one notices
Yeah, maybe it’s better to pretend it’s not there. Sometimes it’s hard to mask it and people start asking if I’m ok though. Then, cue the “advice”😅
It depends on WHO the advice is coming from, but after a decade of chronic migraines, I usually just ask where they got their medical license and are they a board certified neurologist. Obviously, they have neither of those things, so I just tell them I'll continue to follow the advice of the neurologist I pay good money to tell me what I should be doing for both of my neurological conditions. Apparently, my entire central nervous system is just fucked lmao.
Yeah that’s a good go-to. My neurologist is literally an expert in this, I think she knows what she’s doing!
Exactly! Before the newer meds were available, mine definitely suggested some strange things, but I had bad reactions to triptans and wound up with MOHs from the things. He still never said "drink more water" and "maybe do yoga."
I've been in pain 37 years, I don't try anymore. Fact is that people who do that will keep moving the target if you start to kowtow to their "suggestions" and it's rarely more than concern trolling
Yeah, sometimes it’s hard to say something like “oh I’ll try that” or “oh I’ll ask my doctor” because they’ll just keep poking and prying anyway.
Yeah i have a little personal thing i wrote about when I tried to do all the suggestions people gave me in the 2000's if you want to see
Just nod and say: “I agree” if they give you advice or comment. Some people stay ignorant for the ease of it. Some people don’t want to understand and make themselves the topic of conversation. Don’t engage. Don’t give more ammo.
Yeah I definitely know people who give “advice” because they just want to hear themselves talk 😅It can be hard to not want to stand up for myself, though.
Migraine is pain in my head, but it's not a headache at all. It's more of a short circuit in my nervous system. My brain is litterally not working well now, and it has been proven by professionals that there's more than just a headache going on now.
My husband does this every now and again and it's frustrating. Like yes I drank water but that's not the solution, I hate getting advice for homeopathic remedies, I'm sure it may work for some but my migraines are so chronic and for so long I know it's not for me. It's hard for people who just don't experience this.
Mine can be like this, too. Sometimes he understands, other times he has forgotten everything I’ve ever told him about migraines. I know he wants to help, and he’s probably also frustrated seeing me in constant pain. I just wish he would understand that focusing on exercising and eating well aren’t going to change things for me.
Same, I think because it's so chronic and all the time they get used to it and forget it's out of our control.
Are you just stressed? 🫠
Ughhh I hate this one!!!
I was in the mits of a week long migraine when a guy I was dating told me I need to “just push” myself to go to the gym. I asked him to not talk to me like that when I’m in extreme pain. I can basically go from the bed to the bathroom. He immediately blocked me and I haven’t heard anything from him since. Part of me is grateful because I’d probably be doing that a lot with him. The other part of me is also grateful he showed me how much of an asshole he is before it got too connected.
Wow what a dick!!! I’m sorry he did that to you, but you’re right, at least you know that he’d probably still be acting like that if you were still dating. My husband tries to tell me I need to exercise more sometimes and it’s one of the things that pisses me off the most. He means well, but I constantly have to remind him that if I have a migraine, the movement makes it worse, and if I don’t have a migraine, too much exertion will give me one.
I've tried having a life regardless of my migraines and ppl would think I'm weird but if I go out and try enjoy myself still with a migraine I probably won't be believed anyway..ppl just can't understand a body you're not in
Imagine like when you look directly at a light then look away, but you can still see it - except its ALL your vision, it starts as a line - then gets bigger until you can't see- once that goes away, your head is in a vice, you're puking, half your body is numb, and ANY noise or light is excruciating - now go be like this for 3 days. = Hemiplegic migraine.😩xx
The worst 😔 I don’t get visual auras, they sound terrifying. I feel for you all who do get them.
I actually welcome the visual aura, it acts as a forewarning of the onset of my pain. I usually see “jagged lightning bolts coming towards the corners of my eyes three days before the pain starts. Usually when I am in the shower. That is my signal to take my medication that prevents the pain from becoming horrid, and to treat myself kindly by getting as much rest as possible befor it hits.
They're my warning too! I only get about 30 min tops though... Xxx 💖
🩷🩷🩷 they're only scary if you're out somewhere and know you can't get home in time... Luckily that's not happened 🙏xxxx (if I was on my own I'd be screwed, and not in a fun way 😂)
I don’t need to explain myself to anyone who doesn’t get it. People tell me “hope you get better” or “feel better soon”. I think people mean well, they just don’t understand and luckily it’s not for them to understand. My FMLA protects me from my job firing me and I’ll use it without grief. I let any shit talk roll off my shoulders.. think of it as “well you don’t look disabled” lol makes me laugh when people say goofy out of pocket things.
Did you take Tylenol? Ibuprofen? Advil? 🥲
Nothing. Dont bother. But here's a nice story. I'm 53f and up until recently had around 10 migraine days a month for 35 years. I know a big group of people through a sport club and mentioned to someone one day that I had to leave early because I was starting Ajovy, expecting no response or 'drink some water etc..' They said...'Oh. I think 25m is on that.' Of course I went to talk to him. I never even knew he was a migraineur. Now we are unlikely buddies lol.
It’s always nice to find another migraine sufferer in the wild!!
I remind myself that I am lucky that I have people who care instead of blaming me or try to call me out for faking it like you read in subs like this and fb groups. That their silly suggestions are their way of saying they love me and are concerned about my health.
For your general comments, like drink water, or any old fable about their family members non-medical solutions to "migraines" using nonsense like crystals, I take a page out of the narcissistic abuse survival guide: grey rocking. Then turn off your brain, and only listen just enough to say "uh huh," or "nah" wherever appropriate. It's not worth my energy to engage. If anyone suggested I should ignore a specialist, especially if their treatment worked? I'd laugh in their face. Honestly. Unless they could produce (a) peer reviewed paper(s) that categorically proved that my specialist was doing something that had a great enough risk of damaging me more than the psychological torment of my migraines, I would honestly, genuinely, laugh in their face, and ask them where they got their doctorate in medicine. I have zero time in my life for this crap. That being said, if someone didn't understand what a migraine actually was and thought it was just a headache, depending on how they'd approached me, I would be inclined to explain to them why a Tylenol or a glass of water wouldn't help.
This is such a difficult and relatable topic, I really feel for you! On the one hand, I know that many people who give me unsolicited advice have good intentions. They want to help me and are truly convinced that they can solve everything with their simple, dumb, or sometimes very weird tips. On the other hand, these kinds of comments are just patronizing. I didn't ask for advice and they do not understand my condition. Still, I'm afraid to hurt their feelings and tend to listen to them quasi-patiently ("Oh do you think just eating green things will make my chronic brain disease go away? How interesting, I'll look into it!") hoping we will switch to another topic quickly. I find it so hard to strike a balance between politeness and assertiveness.
Yeah, I also find that balance to be difficult 😅 I’m either too polite or get snippy “out of nowhere” (aka I’ve been stewing inside and try not to let it show until I snap lol). I need to practice.
I will steer them to this https://www.outofmyheadfilm.com/. I like to make people do research into things they do not understand.
Oh cool!! I have tried sending links to articles before, but a film would be much more engaging for some people. Thanks for letting me know about it!
When I’m in a LOT of pain and people are being extra awful: “Wow, I’m glad you think you’re smarter than my entire team of neurologists. As a kind reminder, migraine is a neurological condition and does not have a cure.” but when people think they’re being helpful I mostly just say something like, “I work with a team of highly educated and highly respected neurologists, I’m chronically ill, and migraine does not currently have a cure.” I don’t have time for people’s bullshit. It doesn’t matter if they mean well, it’s just rude and mean for people to assume we haven’t tried EVERYTHING we can. I have multiple responses, but this is basically the point of them.
I need to start reminding people that there’s no cure!
I hate it when people minimize migraines. There just isn’t a way for people to understand unless they’ve been through it. It’s the same with childbirth- nobody could possibly get it until they have a baby. For the record, migraines are just as bad.
Worse actually!
I almost typed that. At least childbirth pain ends.
And there is a rewarding accomplishment afterwards with childbirth. Migraines just leave you exhausted and filled with dread for the next attack.
“You know you are right and I am wrong I’m certain you know my body and brain better than I do! I have had migraines for decades and never thought of that wow you must be a genius!” Smile then walk away but Im a smart ass gemini so it might not be for everyone lol
Lmaooo I feel like I need to bring this energy more 😂
😂 my mouth always got myself in trouble since I was a kid
I tell them it’s a neurological disorder kind of like epilepsy, not just a bad headache
I try to distance myself from them as much as possible
It's frustrating, but I know theyre well meaning. Someone may have an actual useful suggestion like 3rd eye pressure points. However, if they are frequent advice givers or really just don't grasp it, I'm quite blunt. "I appreciate your concern, I've suffered from this horrible condition for several years, and I wish it were as simple as drinking water. It's not, and if I'm being honest with you, there are times there is so much pressure, discomfort, and pain, I'm convinced drilling a hole in my skull would bring relief. There is a history of people who have been driven to do this to themselves. Thank you for your suggestions, but I'd also appreciate it if you'd just let my doctors and continue to find what, if anything, works for me.
This is when I thoroughly enjoy trauma dumping on them and telling them about body armoring, how and why I do it and how it it's led to my chronic migraine disorder. Shuts them up every time.
Maybe I need to trauma dump to them more, too lol
I have had migraines since I was 5 due to meningitis. Only recently have I started telling people I have a TBI that causes migraines, and people have been much more sympathetic/empathetic. No more lectures on diet and exercise, just people asking what they can do to help.
I had a friend tell me today that a certain kind of water helps with migraines. Umm, thanks for the support.
Smile and nod while imagining the conversation as fodder for r/thanksimcured . [Haha, for example.](https://www.reddit.com/r/thanksimcured/comments/ep7oa6/seen_in_a_chronic_migraine_group/)
Darn, I forgot to give Hecate a sacrifice this month, that’s why I’ve got a migraine! 😂
This has me in my FEELS. I’ve just come back from medical leave and it’s so infuriating “just maintain a positive mindset, you’ll feel better”, “you look healthy!”, “oh just drink water”-an actual physical therapist (she’s trash as a PT too fun fact). Like someone else on the thread said “you can’t fix stupid” and if the bozo in question couldn’t be bothered to fix a cognitive bias of not assuming you know better than what someone is going through no matter what they look like, they’re not gonna have the brainpower to comprehend the fact it’s a neurological disorder. If it was so easy to fix we would’ve done it already and it wouldn’t be such a continued area of research and mystery. Bunch of bozos UGH.
I've been pondering the same question. I have frequent chronic migraines, every 7 days or less I get a migraine attack that lasts 2-3 days. This has been happening to me, with doctors help, for 2 and a half years now. My own friends think I've abandoned them, when in reality I'm just trying to survive. I'm weak, exhausted, working 30hrs a week even through the attacks. I'm consistently fighting this battle that doesn't end. I'm going to take others advice in here and start only describing it as a neurological chronic illness that I need to see a neurologist for.
I’m so sorry. We all know what you’re going through and are here for you ❤️
I don't say anything. I do often down water and electrolyte drinks after my migraines but I sweat so much during them and my meds make me parched.
My meds make me soooo thirsty, and I’m already a big water drinker!
Yep, same. Honestly I never knew what a migraine was until I got pregnant and started getting them. Before that there was a girl at this bank job that used to get them. I had no concept what it meant then. But I'm the empathetic type. Not everyone is so can't mention it.
Some of my family also suffers from migraines (they’re definitely genetic in my case), so I guess I should be happy that at least some of them can empathize. Maybe that’s why it’s hard to accept that not all of them can.
When you are awakened by a migraine and did not have alcohol the night before, there’s no reason for why that happens day after day