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Internalizing the Stigma of Migraine

Reader favoriteEvery time I have a migraine, there’s a voice in my head that questions whether I’m just being lazy. Even after after five years of practicing listening to my body, extensive therapy, and lots of meditation and self-reflection, I catch myself questioning the legitimacy of my migraine symptoms. Not so much the pain — that’s pretty hard to deny — but the fatigue, brain fog, and general malaise.

I did it again today. After two days of traveling to get to Seattle, where I’m housesitting to escape Phoenix’s monsoon season, I woke to an overcast day. Exactly the kind of day that triggers migraines and prevents me from living in Seattle. I was clearly in a migraine, though the preventives I’m on kept the pain at a level 4. I can physically function at that level, but thinking is tough. Unfortunately, thinking was my primary goal for the day and I was agitated that I couldn’t focus or construct coherent sentences. And I wondered if I was just being lazy, especially because they pain isn’t that bad.

Though quieter than it was five years ago, that voice nagged at me for hours: “You should be doing more. You’re choosing to read over working. You’re not that sick. Just take out the computer. The migraine’s not that bad. You’re being lazy. You haven’t written in a week. You need to be productive.” Then the clouds cleared out and I began to feel a bit better. The first thing I wanted to do? Write. I was not procrastinating or lazy this morning, I was sick. Why is it so hard for me to grasp that obvious, fundamental truth?

The stigma of migraine and society’s belief about illness in general and migraine in particular have occupied my mind a lot lately. I have to wonder if I and so many other migraineurs berate ourselves not only because other people regularly distrust that migraine is a true physical illness, but because we have internalized those same doubts.

This is where the stigma of migraine is especially damaging. Dealing with people who don’t understand — and don’t seem to want to understand — what we’re going through is frustrating and infuriating. Believing it ourselves is way more harmful because it demoralizes us and causes us to question the legitimacy of our own experience. Instead of treating ourselves with compassion, as we would a loved one who was sick, we criticize ourselves for being lazy or unproductive. We push through our pain and other symptoms instead of nurturing ourselves. We dismiss our struggles as not that important. All of this reinforces the message to ourselves (and others) that migraine is not a serious, life-altering illness.

Worst of all, these beliefs fill us with guilt and self-doubt. Even when we “know better,” when we accept as fact that migraine is real and our symptoms are debilitating, we don’t always embrace these beliefs emotionally. My therapist would say it is the difference between knowing something intellectually and knowing it in our hearts. I’ve had the intellectual part down for a while, the emotional aspect still eludes me.

No matter how much I write about the needs of migraineurs and work to reduce its stigma, that very stigma has insinuated itself into my self-perception. It will continue to haunt me whenever I have a migraine until I accept in both my mind and heart that I am not deficient or lazy, but have an illness that is in no way a reflection of my personality, desires, or attitude. That’s a tall order. It’s also my greatest wish for all migraineurs — that we all find a place of internal peace where we can separate who we are from this illness and accept that having a neurological disorder doesn’t make us wrong or bad or broken.

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

  • Ang44
    6 years ago

    I really appreciate you being able to put this in words. Of course we have so much help in our guilt. My mother tells me every time she mentions someone with migraines how they held a job in spite of it all.

  • ekellyclark
    6 years ago

    I’m sorry–that must be really hard.

  • Nancy Harris Bonk moderator
    6 years ago

    Hi Ang44,

    I couldn’t help but comment here too about your mother’s comments. Guilt is a horrible thing to be reinforced by our moms. Some people are not equipped to understand that migraine is NOT a headache. It is a neurological genetic disease, that as Kerri so eloquently said, can be extremely disabling.

    I just had a thought, and you’ve probably already tried things like this to help her understand, but how about explaining migraine is similar to epilepsy when that person isn’t able to find the right medication combination to have their seizures under control?

    Just a thought

    Nancy

  • Kerrie Smyres moderator author
    6 years ago

    Thank you. I’m sorry to hear that your mother’s comments are reinforcing your sense of guilt. It’s hard for people to understand that migraine’s a continuum — some people have a few migraines a year, others are chronic but can function with medication, others are completely disabled.

  • Bonnie Troop
    6 years ago

    Thanks Kerrie for sharing how much guilt is associated with migraine. Migraine affects mental health. Next to the physical pain the greatest challenge of migraine is depression. Thanks for starting the conversation on this. Guilt serves no purpose.

  • Kerrie Smyres moderator author
    6 years ago

    I agree with you on all points!

  • MigraineSavvy
    6 years ago

    WOW! This article just touches me in so many ways I can’t begin to tell you. Thank you Kerrie for your honesty. Yesterday I was in tears. Day 3 of a potential 10 day long migraine. The first 2 days I can usually manage, but by day 3 I feel a mess. I had to push through work and by the time I got home – I found myself thinking that I just cannot bear a life full of pain. Was this all I had to look forward to?

    Now – don’t worry – I am actually a pain counsellor – so I know these are just old thoughts. But the stigma of migraine for me over the past 20 years has been that if I just thought more positively it would go away. And, I hate to admit – I still think that with each and every migraine attack. I have embodied other peoples opinions of migraine instead of being compassionate with myself or admitting I am just sick.

    Thank you for saying this condition is not a reflection of our personality or our hearts. I too often forget!

  • Kerrie Smyres moderator author
    6 years ago

    Thanks for your kind words and sharing your point of view. It is reassuring that even someone who works as a pain counselor struggles with these thoughts. Any tips on working with such thoughts?

  • sspeight
    6 years ago

    Thank you, thank you, thank you!! This is exactly what I needed to hear. I was in school forever, and my Ph.D. was the most difficult degree to get because I was having horrible migraines throughout my program. I know I’m not stupid but I’ve always felt that I should be doing more! Now that I have a college faculty job, the new stresses I have are bringing my migraines back like a bandit. I’m back to the “I should be doing more”… “I’m such a slacker” compared to X, Y, and Z in the administration. I feel like I am alone because I have no one that supports me sans family. Nobody understands. They definitely fall into the not wanting to understand category. I think I go through a period everyday where I question whether I should be here. I didn’t have but a few migraines when I had a less stressful job in a much healthier environment. I still don’t know what I’ll do but thank you for reminding me that I have to put myself first. I think we need people in our lives that can remind us of that, even when we can’t!

  • Kerrie Smyres moderator author
    6 years ago

    You’re welcome! I’m glad it was helpful for you. I’m sorry you’re struggling so much right now. Best wishes in sorting out your work environment and deciding where you need to be.

  • seagypsy
    6 years ago

    This is such a timely article for me. I just saw a neurologist for the first time in my life after a four month long “intractable” migraine. I have had to make some major changes in my life and have learned some things about putting myself first (so very hard to do sometimes). Educating people around me is ongoing, especially if they have never experienced a true migraine. I was forced to take medical leave from work; a major eye-opener for my co-workers. I am so happy to have found this blog/board with others like me and to know that I am not alone. Thank you, Kerrie.

  • Kerrie Smyres moderator author
    6 years ago

    You’re very welcome. I’m sorry you’ve had such a rough time of it lately. I totally know what you meant about it being hard to put yourself first! Take care.

  • Bettyjlo
    6 years ago

    Thank you so much for this article. After I educated my boss last year as to why my speech sometimes slurs and it doesn’t mean it is because of drugs, he has a whole new appreciation and acceptance of my situation and others. Now, unfortunately, my adult children believe I’m addicted to prescription drugs because my speech sometimes slurs and I lose my balance, when in fact this often happens before the migraine hits (and I’ve always been a klutz!). I sometimes know the minute I get out of bed and can’t walk without hitting the wall in the hallway. I suffer from chronic migraines so it can occur often. I have a wonderful GP and also a neurologist who is among the top migraine certified specialists in the nation. They both constantly monitor my medication. I have questioned them, myself, in the past and they have reassured me regarding the medication. I have a strong genetic connection through several generations on both sides. To constantly be scrutinized, questioned and accused, only adds to the stigma. Thank goodness for a supportive husband, who has endured the many changes in my migraine patterns over the past 42 years. Thank you again so much for this article!

  • zippy36
    6 years ago

    Thankfully your boss understands.

  • zippy36
    6 years ago

    I too have realized that I stutter before I get a migraine. If I am having a hard time speaking then I know most often that I am going to get a migraine. I have been made fun of many times for this. When I get the migraine my lisp reappears from my childhood. I thought this was from my medication but now believe it is all part of the process.

  • Kerrie Smyres moderator author
    6 years ago

    I’m glad to hear you have a supportive partner and boss, though I’m sorry you’re struggling with your children’s lack of understanding. It seems like there’s always a battle around the stigma of migraine! Take care of yourself.

  • zippy36
    6 years ago

    Migraines have been a part of my life forever. They run in my family and I have seen and been the victim of the stigma associated with them. My Aunts and I have all been called “pill poppers” as if we like to lie on the couch and take medication. This judgement comes from the very people who have watched us suffer in pain for years.
    Working at my job is an entirely different story!! I have been there 24 years. I had been through the doubt, the unbelief and then finally the acceptance that my migraines were real. Now I have a new boss. I hear the comments that are said about me and he does bring me up as an “example” of people who fake illness. It really stresses me out that I feel that I have to start all over again in educating him. I just hope that my efforts make him a better leader. I did not choose this way of life for myself. I would love for those people to walk through one migraine episode in my shoes but walk through it with their own coping skills. I don’t think they would do so well……..

  • zippy36
    6 years ago

    I hear you MigraineSavvy! I am sorry to hear that you suffer so much. After reading some of the stories on here I know that my condition could be so much worse!! Only people with Migraines can truly understand.

  • MigraineSavvy
    6 years ago

    I’d like them to walk through a whole year of chronic migraines. I get 20 days per month. Once may not be enough to convince them of the relentless repetitive nature of them. I have a friend – who stills thinks I am faking – who had one once during her pregnancy over 30 years ago. And she says she knows what its like. Well I am sorry – you don’t!!!!

    So – I am on your side, but feel once is just not enough to understand this. I sound so cruel – sorry!

  • zippy36
    6 years ago

    Eve: I am glad that you have support at your job. I do also to an extent. I rarely drink and if my boss said that to me I would not be able to hold back! I have grown more assertive with my age. Educating myself also helped. I am not crazy after all.

  • zippy36
    6 years ago

    Thank you for your supporting words and your posts!! I appreciate your understanding!!

  • Eve
    6 years ago

    I don’t think most people understand that a huge part of dealing with migraine is dealing with others’ widely varying and unpredictable reactions/opinions. My current boss is fantastically understanding about migraine; had just one herself as a teenager and totally gets that it’s not “just a headache” and pretty much takes over your entire consciousness once it sets in. However, a former boss was the type who would ask (in front of other staff!) things like, “So why do you have a headache? Did you go out drinking last night or what?”

    I would start to feel really discouraged, like everyone must just think I’m lazy or a drama queen or habitual partier (though I’m convinced they did NOT actually think that!). Thankfully, an oblivious/hostile boss doesn’t mean that all your coworkers necessarily share that view. At that same job, all my peers were sincerely very understanding–even having no problem holding staff meetings in near-darkness on days I wasn’t feeling well! I hope your boss is the exception at your job also, and that you are able to get at least some support from your peers. Best of luck in educating him!!

  • Kerrie Smyres moderator author
    6 years ago

    What a pain to have to re-educate a new boss on what migraine is really like! It sounds like you have a positive attitude and a firm sense of who you are despite migraine — both of which will make you a good teacher. Best of luck.

  • joy
    6 years ago

    This has been the longest migraine of my life. The weather is my trigger and it has been either overcast or raining for over a week. At this point I am at the point of what else can I do and I need to be doing more. I am functioning as long as I do not have to think much.

  • Kerrie Smyres moderator author
    6 years ago

    I’m very sorry you’re in such a bad one. Hang in there and try to take care of yourself.

  • Linda K.
    6 years ago

    I think you crawled into my head and life! THANK YOU. I am on day 4 of one of the worst ongoing migraines I’ve ever had, and I have them daily. It is so reassuring to hear from those who “get it.”

  • Kerrie Smyres moderator author
    6 years ago

    I’m so sorry to hear that Linda. I hope it lets up soon. Take care.

  • Tracy Hilliard
    6 years ago

    I don’t think that it’s wrong to take care of yourself. If I’m mid-migraine and I can’t function, I can’t function and I go take care of myself.

    They’re less extreme if you catch them early, treat them rapidly, and don’t delay the ‘nap’…means that you might be able to nip it in the bud and get back to productiveness so much faster.

    I have caught myself ‘nursing’ a headache because it’s ‘not bad enough’, but my productiveness has hit the floor hours before, and really, I’m not doing myself any favors.

    I think that the real issue is that we need people around us (like my wonderful husband) who go “why are you dead to the world right now?” and upon hearing I have a headache go “take something for it and go lie down.”

    We need understanding to know that it’s okay to go and take that nap. We can’t let our depression of “crap, I feel one coming on, there goes my day!” to motivate us in denying ourselves. It’s actually faster, less painful and less day-ruining to take the hour or two, take something, and rest.

    Of course, when I don’t do that for long enough, I’m often hospitalized…so…yeah I may have learned my lesson. XD

  • Kerrie Smyres moderator author
    6 years ago

    “Pushing through” is often a badge of honor, maybe because some of us see no other way to function. I’m learning to take better care of myself and am experimenting with not pushing myself so hard. Sounds like you’ve got that idea down, though I’m sorry you had to learn the lesson through hospitalization.

  • Vicki
    6 years ago

    Thank you for writing this! All my adult life I have had migraine and chronic daily headaches(which I think are just a milder form of migraine because of the similar symptoms). I have had the same feelings in the back of my mind the whole time. I’ve never been a “go-getter”. Gee, I wonder why. Now, after all these years, and still having the same feelings, I wonder if this “lifestyle” has become somewhat habit. After so many years, I now have a preventative and abortives that I didn’t have before, but the lack of motivation is still the same. What would I be like, how much energy would I have if I didn’t have migraine?

  • Kerrie Smyres moderator author
    6 years ago

    You’re welcome! It’s hard to know what’s migraine, what’s inherent to a person’s personality, and, like Lisa points out, what’s possibly depression. If your preventives and abortives have had a significant reduction on the frequency and/or severity of your migraine attacks, I’m with Lisa that you might want to consider seeing a therapist to cope with depression or help with motivation. Now that preventives have reduced the severity of my attacks, I’m definitely able to do more than I could when I was knocked down all the time, but I’m definitely a “go getter” type underneath the migraines. Best wishes in your journey!

  • lisacooper
    6 years ago

    Vicki. I think it would be helpful for you to talk to a counselor. Your lack of motivation might be depression, or it might be part of your personality. Perhaps a counselor could help you figure out what’s going on and how to get motivated.

  • Trecia Osadchuk Neal
    6 years ago

    First time I’ve read your blog, but i feel like you are my best friend. You made me cry. This has been the rainiest summer on record for Atlanta and I have had a nonstop migraine since May. It has been devastating. You have described all of my thoughts and feelings perfectly so it’s so nice to know that it’s not just me! Thank you thank you thank you!

  • Kerrie Smyres moderator author
    6 years ago

    You’re welcome! I’m sorry you’re going through such a tough time. You are definitely not alone. Take good care of yourself.

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