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When you’re told your migraine isn’t “real”

Chances are, if you’ve told anyone about your migraine diagnosis, you’ve gotten some very well-meaning advice from about half those people. “My aunt had migraines forever until she steeped rare Asian mushrooms in a tea made of cow urine—you should try it!” “My uncle had migraines but it turned out he was just allergic to his down pillow.” “I have seen eight thousand ads for Botox, so now’s the time when I ask you if you have tried Botox.”

I, like many of you out there, have heard a lot of advice. I remember that people’s hearts are in the right place and that they have no idea that, in fact, I have tried a lot of things to get my migraines under control.

Another type of feedback we hear frequently doesn’t have the same positive, thoughtful origins as well-meaning advice.  This feedback consists of people’s doubt, ignorance, and disbelief. This is the sort of feedback you get that makes you realize that the person giving it isn’t trusting that your experience is real, and you can then decide if you want to make it into a teachable moment or just drop it.

One thing I’ve encountered over and over again is stories from you all about others dismissing your migraine claims.  Sadly, a lot of the time this feedback is coming directly from other migraineurs, migraineurs who have yet to really realize that migraine can manifest itself really differently in person to person and from attack to attack.

Here are the types of comments many migraine.com community has had to endure:

Your migraine isn’t real if…

…you can look at a computer screen

…you are able to drive

…you aren’t in bed in the fetal position in a dark room

…you are able to sit up

…you are able to speak

…you are able to move without vomiting

…you are able to maintain a conversation

…you can take care of your kids

…you can’t sleep through the night

…you can sleep through the night

…you can maintain employment

…you don’t see a headache/migraine specialist

…you don’t take preventive meds

…you haven’t tried every single thing in the world to “cure” yourself

…you don’t immediately take the advice of whomever you’re speaking with

…etc., etc.

Thank goodness for communities, both online and “real-life,” that can connect migraineurs to one another and allow us to learn about the intricacies of this very, very complicated illness. Thank goodness we have advocates and doctors encouraging us to keep track of our migraine patterns so we know how a migraine shows up in our lives. Thank goodness we have supporters—even if they’re just screen names on the migraine.com page or migraine.com Facebook page—that tell us to find another doctor when we tell yet another story of having the reality of our illness be dismissed.

Because I am now a fairly well-known migraine health advocate and writer, I sometimes encounter the reverse side of the problem a lot of you all have. That is to say, instead of telling me that my attacks aren’t real, many people I know—particularly friends and family I have here where I live in Athens, Georgia—dismiss their own struggle with migraine because they simply assume it’s “not as bad as what you go through.”  Subjectively speaking, maybe I can agree with that a little bit at times: it’s true that my friend who gets one (count it) migraine a year doesn’t have the same sorts of challenges I do, but it doesn’t mean that her crappy yearly migraine attack isn’t really a migraine.  Usually, though, I have to speak up and validate the other person’s experience, saying, “Migraines are a little bit different for everyone, and if you have a headache or migraine that is interrupting your ability to live a full life, I really hope you’ll see a doctor.” My migraine episodes are different than a lot of my friends’ episodes are, but that doesn’t make them any more real.

What do you have to say? Have you ever had the experience of someone claiming that your migraine isn’t real, either online or in person? How did you handle the situation? Or, are you more like me, encountering people who belittle their own experiences because they seem to think there can only be one really sick migraineur present?  Please share your comments and stories below, or just add to my list above! 

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • SilverPhoenix13
    2 years ago

    For the most part, the people in my life our very understanding and supportive. My father in law is one of the ones that makes the wellmeaning suggestions. My mother is one of the ones who is constantly tagging me on helpful remedies. My mother used to suffer migraines, herself, but mine are more frequent and more severe and she just wants to help. I’ve been getting them since I was 7 or 8.

    The only one I have an issue with is one of my cousins. She never outright told me that she doesn’t believe me, but when I moved, a friend of mine took my position at the store my cousin and I both worked at. For whatever reason, my cousin decided to tell my friend that she thought I was faking my migraines. Don’t ask me why. I don’t understand her, at all, and ehy she would think my friend wouldn’t tell me what she said.

    It blows my mind that anyone would think we’d want to rack up thousands of dollars in medical bills, take medicines we don’t need, miss work which -unless you have sick time available- would cause us to lose even more money than what we’re dpending on medical bills and medicines.

  • Holly Baddour moderator
    2 years ago

    SilverPhoenix13 – thanks so much for joining the discussion. Glad to hear you’ve got a solid support system for the most part, but often it does take just one person to really hurt us deeply when it comes to questioning our diagnosis. I’m so sorry to hear about your cousin. Generally these folks are coming from a place of ignorance. It’s too bad she didn’t talk to you directly so you could educate her about the condition. You are not alone and please remember that we are always here to provide support! Holly B. (migraine.com moderator).

  • Kelentaria
    3 years ago

    For a long time I was able to function at work consistently with or without a migraine, but have come to find out that I have possibly damaged my liver due to constantly overdosing on excedrin. I currently have no job due to another just as bad reason (my depression (having a nervous breakdown in your boss’s office never turns out well)). A few months earlier I was diagnosed with major depressive disorder, and all the medications I am talking/was taking were wrecking havoc. Some were migraine prevention meds that didn’t seem to work,and simvastatin (imitrex) which was hit and miss at getting rid of them. After I lost my job I found out I have chronic migraine and was placed on propranolol which helps a little more because the rest of my meds raise my blood pressure. Then recently I found out I have fibromyalgia. All adding up to the lovely combination of disorders.

    However, in regards to my migraines, symptom wise I don’t really get nauseous or vomit, but I sometimes get so dizzy I become a falling risk. I also am very light sensitive and sound sensitive. I try to stay in bed wearing headphones and sunglasses after taking all my preventive/reduction medications. Rarely I can sleep them off but usually the medication pushes the pain into the background, but not get rid of it. I have been known to have migraines for weeks or months before they finally go away.

  • Auemerald
    3 years ago

    How do I feel about those well meaning advice on how to “cure” my migraines? That would depend on if I have one or not. If I am not feeling bad, hey, maybe they will say something I haven’t tried. Maybe that one will work (tongue in cheek).

    Now the disbelief or it doesn’t hurt that bad, or that’s not a trigger stuff. That’s exhausting, and it amazes me it can come from people who have seen me on my way to the ER cause nothing else is working.

  • Julie
    3 years ago

    I had a customer accuse me of being a drunk. I had Monday migraines then. I would overdo on the weekend and wind up with an attack Monday. I miss those days now. My poor clients have watched me deteriorate over the past five years. Now I am a hermit lady who just had to quit working altogether. No one can tell you how to lose everything. It’s just something some folks go through. I’m trying to get disability so we won’t lose our house. Is it bad to talk about how financially devastating my migraine is? I was the primary breadwinner.

  • Julie
    3 years ago

    Afterthought…………………..

    WHO would pretend to be this way???? I miss my life.

  • JAR
    3 years ago

    My husband would never have the nerve to actually vocalize that he doesn’t believe that I have migraines. He knows better than that. 😉 But…his behavior shows me that he totally doesn’t get it. It deeply hurts my feelings. It puts a barrier between us (that he doesn’t even realize) that keeps me from loving and trusting him as much as I want to. Sad.

  • lmsandoval
    3 years ago

    I know first had what it feels like to have people not believe you or dismiss you as if you are not really sick. I am very, very blessed that I have a supportive family and children. I hate that I miss somethings that they want me to be at, but they know sometimes I am in just too much pain. I am also thankful for forums like this where I can see that I am not alone.

  • katebenson
    3 years ago

    I am the co-owner of a small business. I also have a teenager at home. Due to the schedules of the others in the office, I am usually the only one there in the morning, and have to juggle several things at once. If I have a ‘small’ migraine, I can show up, but I know I’m not at my best-but I own it, so I suck it up. When I say that I have a headache but I’m answering phones, updating contracts, scheduling vendors, talking to owners, and trying to plug through, I can sometimes notice ‘the look’. I know what the headache is, I know how I feel, and I know I wouldn’t get any rest if I went home. So I stay. And yes, it IS a Migraine-even if I am Upright. Sigh.

  • banjokatt@aol.com
    3 years ago

    Boy, do I know about this! After having terrible chronic migraines for years, I had to quit my job and go on disability. The migraines continued after I quit, despite seeing two of the best neuros in the NYC area and trying ever migraine medicine and painkiller possible. I also was seeing a neuropsychiatrist to help with the inevitable depression.

    Spending so much time in bed really hurt my marriage (the affair my husband had with his secretary didn’t help either.) After the divorce, I moved back to the midwest with my two young sons so my family could help me out. At that point I was was having horrific migraines on a daily basis for months on end.

    When I have mid-level migraines, I have always tried to read because it takes my mind off the pain and it makes me feel like I’m accomplishing something while laying in bed. After I was home for a few weeks, my father was talking to one of his friends who also had terrible migraines and gave some rally bad advice. I’ll never forget when my dad told me I couldn’t be having “real migraines” because I was able to read some times. I was in pain 24/7, had to quit my job and had my marriage broken up and I was told I wasn’t having real migraines. Boy, did that make me angry!

  • marycr8on
    3 years ago

    It sucks that we not only have this horrible disease but that we have to explain ourselves to everyone and put up with hearing about what we should do since we don’t know anything about migraines ourselves… I have been pretty lucky, most of my friends and family are pretty good about believing that I have migraines, but not all of them know how bad they are. I had a really horrible prodrome to the eventual and equally disabling migraine at a parade on the 4th of July. Several of my friends were there and finally saw for themselves some of what I go through. I couldn’t stand, turn my head or make much sense when I was talking. It was like I was drunk, but my eye was swollen, tearing and drooping and my temples were throbbing so hard that one of my friends noticed and said they looked like 2 huge bruises. Now since they have seen that for themselves, I think they all have a better understanding of what goes on. After seeing that, they didn’t believe me when I told them the actual headache part hadn’t even started yet, they looked almost as sick as I did! Thank goodness, my husband got me home before it hit really hard.

  • TLG
    3 years ago

    My hospital stopped pain injections three years ago. When I have to go to the ER, they give me the same pills that I have at home. Or 1-2mgs that really doesn’t stop the pain. I’ve tried everything to get the hospital reinstate pain injections. I have terminal cancer. They found it, when they were trying to figure out why I get daily migraines. I have friendships with the other patients, that get migraines. How come my hospital stopped pain shots, when there is such pain in the world? I’ve had daily migraines the last 11+ years. When do migraine patients count? When are doctor’s going to go back and relearn the oath that was shown to them? It’s hard to be sick with daily migraines, plus other diseases. But it’s especially hard on your family. The people that you don’t have to explain your pain too. They see it in your eyes, hear it with not only their ears, but with their hearts. If your hospital stops pain shots, I pray that all of the suffering that the millions of us endure, will be helped by the faith and love of God our father. And our lord and savior, Jesus.

  • ClaraMae727
    3 years ago

    I have a friend who has them and is the complete authority on all types of headaches. I have headaches every day, migraines typically 1-2 times a week. With the frequency of my attacks, I have had to find ways to live and work through the pain and suffering of an attack. I am constantly grilled by this person as to how I am able to function when in the midst of an episode. When you are single and responsible for yourself you must do what you have to. I have had compromised vision, facial numbness, vomiting etc, but still am questioned by her. It makes me almost angry, which I know isn’t right.

  • grammayumyum
    3 years ago

    After over 40 years of migraines, I would really like to brainstorm some silly, funny, or even smart-aleck responses to these kinds of situations. Has anyone come up with a good one? If nothing else, it would give us the relief of a laugh!

    I’m remembering the woman who kept asking me which of my kids were *mine and which were adopted. I said, “They’re all mine.” She had the nerve to say, “Well! You *know what I mean!” I said, “No, I don’t.” I didn’t get asked again.

    Can we come up with something that, humorously or seriously, helps people realize it’s not their place to cure or judge us?

  • Holly H.
    3 years ago

    After a year of living in the senior towers, most folks have “seen” for themselves the disabling and havoc that this invisible illness has brought upon my life. Still just in the past couple of weeks:
    — One told me she’s praying for me but I “have to do my part” or it won’t work, and started to tell me what I had to say repeatedly to bring about a difference. I quietly said to her, “People should quit telling chronically ill people that kind of stuff. Do you realize you are saying that I’ve been in this kind of pain and suffering for 5 years because I didn’t repeat some particular words over and over? Do you realize that you are also telling me this is all my own fault with that kind of advice?” By then I had tears streaming down my face. Over-react on a really pain-filled day when I was just out of my little space trying to take a walk? Probably.
    — And again, I still hear that if I’m not living in a fetal position, vomiting and crying, etc., it’s not as bad as all that. My response is I’ve been doing this for 5 years; I’ve had to learn some coping skills just to function at all.
    — But then there was that one person who looked at my pain-filled eyes and said, “You are pushing with all your might, and sometimes just faking, being any kind of functional just to have any semblance of a life, aren’t you? I admire that in you.” Wow, those affirming words were like a jeweled gift!

  • Karen Rudd
    3 years ago

    I’ve had chronic intractable migraine since age 11. One of my first ‘adult’ doctors finally threw up his hands in surrender when nothing worked and declared ‘Young lady, this is all in your head!’ I laughed and said, ‘Well, at least we agree on something Doc!’ From then on, he actually did try to help, although he eventually ran into dead ends, and I moved into the realm of pain management. I did pop into his office over the recently holiday, and 35 years later, he still remembered me and said that I changed his mind all those years ago. All I wanted was to enjoy my life, and I taught him to listen and consider the quality of life of his patients with chronic pain.

  • Karen
    3 years ago

    This is so true!! I have so many friends that tag me in every “miracle cure” they see online, and I love that they care, even if I’ve been sent the same article by 75 other friends. Then I have the doubters. They are actually my parents. But they think a migraine is “just a headache” so I should just try taking aspirin and taking a nap. It hurts me that they won’t accept that the struggles I (rarely) tell them about are real. It’s a very lonely feeling. I’m so glad for this page, because I get to see there are more people like me, and I’m not alone in my struggle. Thank you.

  • Karen Rudd
    3 years ago

    I believe we all have the same issue. I try to remember that all of these people are thinking of me when they do this, something it’s easy to lose sight of.

  • 23nhbeq
    3 years ago

    This post is so true and such a relief to read it. I’ve gotten advice from everyone! Especially people who don’t actually ever get migraines or headaches. “Next time, press this pressure point in your hand”, ” have you been paying attention to your diet?” “Maybe it’s tour birth control” “did you try an ice pack?”, ” put cayane pepper up your nose” “my daughter had migraines and she found out she was allergic to processed meat” “I had migraines, it was a bad tooth” and my favorite: “gosh, botox worked for me, I can’t believe it didn’t work for you!”. It is daunting. We already feel bad that we have headaches every other day, it just makes me feel worse when people inadvertently point out that easy, quick remedies don’t work for us. I wish it were that simple. I have had a lot of different treatments and we still cant find something that keeps them at bay for more than a week.

  • mbcpa
    3 years ago

    It was terribly annoying to be told by a NURSE (who, of course would know EVERYTHING so much better!) that what I’ve had for the last 41 years aren’t migraines at all because they start in the back of my neck. According to her they’re “just tension headaches”. So, if I would just relax… No sense even arguing. I don’t even tell people about the migraines if I can help it because I get so tired of all the BS answers and suggestions.

  • Karen
    3 years ago

    I’m with you there! Only a few very close friends of mine know anything about my migraines. The rest of them just think I’m flaky. 🙂

  • blueangel1980
    3 years ago

    My sister and I both have migraines. Mine are worse in terms of my ability to do anything when I have that horrible one where I’m throwing up the medicine and nothings gonna stop it until I go get a shot. My sister still manages to work and function most of the time where as mine take me out of that day completely. She has told me in the past to suck it up. It can’t be that bad. I funny think she fully understands mine affect me differently than hers do her. Mine are more frequent which sometimes leaves me weak and exhausted to where I need a couple days just to feel ok again. I would never wish my migraines on anyone, but I just wish she could understand.

  • 27r5rbq
    3 years ago

    I always get people who don’t understand and say at my young age i shouldn’t be on ssi and should be able to work but i can’t i have both chronic migraines and fibromyalgia.

  • TripletMomma
    3 years ago

    Three of my kids (age 7)have migraine. I get so tired of dealing with the crap from people questioning me about how I know my kids have migraine. Since I have migraine, their father has migraine and it goes on and on across the generations. I have see the look on my kids’ faces when they can’t even verbalize what they feel. People need to realize that even kids can have migraine.

  • The Migraine Girl moderator author
    3 years ago

    So true! Your kids are lucky to have you as a mom and advocate. Keep fighting the good fight, TripletMama.

    -Janet G., “The Migraine Girl”

  • leorathesane
    3 years ago

    This is so important! Validating each others’ experiences so that we can all stand stronger together is a key part of creating community. If we are to make real change in how our condition is treated by the rest of the world, through research, recognition in workplace accommodations, better medical treatments, etc… Then we need to be seen as a unified group, and not as individuals who tear each other down. We all suffer differently, which means that we can each support each other differently!

  • The Migraine Girl moderator author
    3 years ago

    Thanks for this supportive feedback!

  • Lillian
    3 years ago

    I have migraines almost every day and have tried every medication and treatment out there and Yet I’ve had family say that they couldn’t believe I had that many migraines and as often as I do. I get sick to my stomach from my meds so it’s really hard to go out and predict when I’m going to have to rush to a toilet so I’ve become a home body. Family members have gotten angry at times if we I don’t visit or show up to their events which has upset my husband because he’s seen first hand what I go through daily so he’s pretty much pulled away from those who have ridiculed me. It’s hurtful to us because those who you feel you could trust and depend on for support have turned on you. I don’t wish this disease on anyone but at times feel if they knew what I went through they would then understand.

  • Karen Rudd
    3 years ago

    I hate to say it, but my husband knew they were bad, but was one of those who didn’t really get how bad they could be. Then he got one. It broke my heart to see him suffer like that, but honestly, he’s never questioned mine since. So no, it’s not fair to wish it on anyone else, but I’ve seen first hand how big a difference it can make in perception.

  • adefalco28
    3 years ago

    I heard that!! My family is the same way, they say I just “fake” migraines so I don’t have to attend functions. I don’t know how one fakes auras, vomiting, teary eyes, dizziness, etc. If I were actually faking these symptoms, I’m sure I’d get an Oscar!! Lol.

    I’ve found that unfortunately the more they ridicule me the worse the migraines get and I just have to say NO. Now when I get a comment in that area I say “I’m sorry you feel that way” it’s a little phrase but it stops people cold…

  • The Migraine Girl moderator author
    3 years ago

    Lillian, that sounds so tough. I am thankful you have a loving husband who validates your experience. Have you thought about writing a letter or sending information about migraine to friends and family who haven’t been understanding?

    Thanks for your comment.

    Take care,
    Janet G., “The Migraine Girl”

  • hemi
    3 years ago

    There are so many types of migraines with different symptoms, some more severe than others. I have chronic hemiplegic migraines and they are very severe and disabling. However, my sister gets migraines too, and will actually call me while she is having one. I could never call someone while having a migraine so I figure hers is a different type. My mother also has them and she can will herself to get rid of it. I can’t but again, probably have a different type.

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