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Migraine Guilt

Migraine Guilt

I feel guilty that because of a migraine, I ___________________.

  • Missed my son’s school play
  • Couldn’t go to my daughter’s soccer game
  • Canceled plans with a friend
  • Skipped Sunday dinner with my family
  • Was unable to walk my dog after work
  • Had to have a coworker cover for me
  • Left my group hanging on a class project

However you fill in the blank, most people with migraine have said that they feel guilty about something they did (or, more often, didn’t do) because of a migraine attack. The reasons for guilt run the gamut. I have even felt guilty for throwing away vegetables that went bad because I was too sick to prepare them.

Planting a seed

The first time I wrote about migraine guilt, a headache specialist who reads my blog asked why I felt guilty when I wasn’t to blame for any of my perceived failings. I didn’t get what she was saying. It didn’t matter to me that I wasn’t to blame—I let people down (even my local farmer) and felt guilty for having done so. Recently, though, the seed that she planted nearly a decade ago began to sprout.

Guilt is what we feel when we have or believe we have done something wrong. It’s often called a useless emotion, but it’s a great motivator for changing behavior. Social worker and researcher Brené Brown describes it like this: “We feel guilty when we hold up something we’ve done or failed to do against the kind of person we want to be. It’s an uncomfortable feeling, but one that’s helpful. When we apologize for something we’ve done, make amends to others, or change a behavior that we don’t feel good about, guilt is most often the motivator.”1

Apologizing for something you can’t change

You can apologize for something you believe you’ve done wrong because of a migraine attack, but there’s no behavior you can change. Having a migraine attack is not a behavior, it’s a physical state over which you have no control. According to Brown and other researchers, the guilt that I’ve always associated with migraine is actually shame. Brown summarizes the difference between the two: “Guilt = I did something bad. Shame = I am bad.”

Ouch.

Because I’m a glutton for punishment, I read Brown’s book on shame called “I Thought it Was Just Me.”2 I swore an astonishing amount, not out of anger, but in disbelieving recognition. Shame was the fuel for so many things I spent the early years of my disability doing: chattering nonstop to keep people from asking questions about me for fear they’d uncover my secret; frequently saying, “I’m the kind of person who…” in order to define myself as something other than sick; beating myself up for doing and saying the wrong things.

Feeling ashamed

I was ashamed for being disabled by an illness most people understood to be no big deal. I was ashamed that I had to cancel on friends and family so often. I was ashamed that I couldn’t will myself to get better. I was ashamed that no matter what I did, the symptoms kept getting worse. I was ashamed of not being the person I thought I should be. I was ashamed that this illness was a neon sign advertising my weakness and failure to all who cared to look.

The guise of guilt

I was steeped in shame, but called it guilt. Guilt felt rational and reasonable. I’d rather believe I felt guilty for letting produce go to waste than to admit how deeply ashamed I was that I couldn’t keep up with the simplest things in life. The guise of guilt let me focus on systems and schedules so I could avoid the desolation of shame. I thought I was trying to fix everything for which I felt guilty. I was really deflecting my attention from the shame.

The dark place of disabling chronic migraine is where the shame began to take root, but my fierce determination to hide the shame (even from myself) is what allowed it to burgeon. At a time when I was physically and emotionally depleted by migraine, self-compassion should have been a priority. Instead, I spent every spare bit of energy tending my shame. It grew so high that it nearly overtook me.

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.

  1. Brown,Brené. The Gifts of Imperfection. Hazelden Publishing, 2013.
  2. Brown,Brené. I Thought it Was Just Me. Penguin, 2007.

Comments

  • ITgirl
    4 years ago

    Hi there Carrie. My name is Michelle Odom, and I am from Little Rock Arkansas. I too suffer from migraines. And yes, I felt guilt/shame of them. About a year ago, I had a migraine that lasted four days, and forced me to do exactly as you said. I had to lay in bed. There was just no help for it. As a result, I missed the concert that we had paid to see months ago. My husband took my youngest daughter instead, and she loved it. So it all worked out really well, but I still felt that guilt/shame. Most of the time though, I have Ended up doing the reverse. I don’t know if anybody else experiences this, but I generally don’t take care of my symptoms as I should, because my thought process goes if I don’t let this stupid migraine run my life, being my boss, then I have nothing to feel guilty or ashamed about. Except of course, that the migraine is still there and won’t go away until I take my Fioricet and go to bed. Since this is the first time I have ever been a part of a group of people who suffer from the same thing as me, I now feel like I can actually talk about this with people who understand. I don’t think anybody in my immediate family really gets it, because I am so busy trying to act like I don’t have a problem. There have been times when my husband that I would practice music together, and I would say oh I really don’t feel up to this right now, and he would say things like what happens when you have a show to do and you’ve got a migraine? And I wouldn’t know what to say, as my immediate response would be, I’m not going to let that migraine bully me into not doing my show. Of course, it’s all blister. I will though that migraines have made me forget lyrics and keyboard parts that I usually would know how to play. However, sometimes when I am playing, the symptoms abate for a little while, and that’s nice. Only to return when the show is done. Which is not nice. There is little about this… Disorder? Problem? Disease? Donis… That I understand. Part of it is not having any medical support. I sometimes think that most people believe that migraines are “all in my mind. “And I really don’t have to have them if I don’t want them. I think that’s what started the anti-guilt/shame thing that I do. Teachers… Nurses… Saying we don’t believe you’re really having a migraine. Even my own mother. Of course now that I’m a mom, I know that the response from my mom was a typical one that moms do when they believe their child might be doing whatevery Child does it one time or another, trying to get out of the test, get out of class, whatever, by pleading sick. I now understand this, because I’ve set it to my own kids. You must not be sick, because you’re all happy and laughing. My mom only did that one time. To her credit, she was the one defending me to all the doctors nurses and teachers who thought that I might actually be faking. I think the one that hurt the most was my choir teacher. My mom called wants to say that I would not make a very important concert because of migraine. My choir teacher, who is a bit of a perfectionist, went on and on about how this other students, a senior in high school I think, had broken her ankle, but yet was still up onstage in a wheelchair performing. With all due respect to that student, that’s not the same thing. Anyway, all this to say that I will understand the guilt/shame effect, though with me it works in the reverse, and probably more harmful way, that I don’t always take care of my symptoms as I should. I don’t often wake up with migraines. The way my migraines 10 to work, is that they usually start in the afternoon, and just continually get worse until I do something about that. Of course, the medicines I take make it to where I don’t want to do anything about them, because I’m afraid they will knock me out or whatever. Really though, Fioricet doesn’t knock me out the way it used to. So I probably have a lot of unfounded worry.

  • Kerrie Smyres moderator author
    4 years ago

    Thanks for sharing your story. I think it’s very common to believe that my not “giving in” to the migraine attack, we’re somehow in control. I tried for so long to maintain that illusion of control. It was only when I acknowledged how severe my attacks are and how much of my life migraine dictates that it stopped having so much power over me. It sounds like the same may be true for you.

    So many of us have similar stories of not being believed as children. I wonder how much of a role it plays in our collective shame. If you’re told from a young age that you’re lying or that you just need to suck it up and push on, it’s hard not to have that as your default when you’re older.

    Thanks again for sharing your story. I can relate to so much of it.

    Take care,
    Kerrie

  • Maureen
    4 years ago

    Mind blown, in a good way. I have definitely been experiencing shame and calling it guilt!
    I feel better equipped mentally. Not that I won’t be ashamed, necessarily, but that I will see it for what it is and can deal with it better.
    Thanks.

  • Kerrie Smyres moderator author
    4 years ago

    Maureen, it’s amazing how just having a name for or understanding of something can make us so much more aware of it. I think some amount of shame will always creep up, but recognizing it does make it so much easier to deal with.

    Take care,
    Kerrie

  • jo17151
    4 years ago

    Wonderful article Kerrie – it really helps put things in to perspective. I’ve never thought about the difference between shame and guilt.

    When you mentioned feeling guilty about letting the farmers down, I almost fell off my chair. I feel that often when tossing food out that went bad because health issues prevented me from preparing it . . . and during a recent bad series of migraines, felt badly for buying frozen veggies at the grocery store rather than fresh from the farmers market!

    When I read that paragraph, I was thinking “it’s not your fault, don’t be so hard on yourself” – and my next thought was “hey – wait – that’s me”

    Thank you for making me feel less alone and as someone else mentioned – you’ve giving me a really good topic for my next counseling session.

  • Kerrie Smyres moderator author
    4 years ago

    Jo, It’s mind-boggling how much quicker we are to have compassion for other people in the exact same situation than we our for ourselves! I’m sorry you can relate, but thanks for your comment—you’ve made me feel less alone, too.

    Take care,
    Kerrie

  • dizzyblonde
    4 years ago

    I can totally relate to these feelings of guilt. But I’ve also noticed that I seem to take on the responsibility for other people’s feelings. If someone is mad at me because I’m unable to do something because of my health, then I feel unbelievably bad. Since I grew up rather sickly with undiagnosed migraines, my mom was always mad about something I did or didn’t do. So I’m noticing that I automatically go to these same feelings now even when someone isn’t mad, maybe they are just neutral. I am now convinced that these guilty feelings and the stress they cause are making my headaches worse.

  • Kerrie Smyres moderator author
    4 years ago

    This is such a complicated emotional life we lead! I totally agree with the idea of taking on other people’s emotions about my health. I think you and I have a lot of company in this.

    My therapist suggested that I use taking on other people’s feelings as a strategy to distract myself from the migraine attack. That if I can feel bad for letting other people down, I can pay less attention to how awful I feel physically. She thought it was making my attacks worse. It wasn’t for me (though I’ve heard the opposite from others), but it was making the experience of a migraine attack much more draining and emotionally exhausting than it would have been otherwise.

    Take care,
    Kerrie

  • Kerrie Smyres moderator author
    4 years ago

    Thank you all for your comments! It means a lot to hear that my story touched so many of you. I continue to be amazed by how many similarities there are among those of us with migraine. Even though it feels like it sometimes, none of us are alone in this.

    Take care,
    Kerrie

  • Kerrie Smyres moderator author
    4 years ago

    Pepperview, I’m sorry to have punched you! I, too, appreciate being punched in the gut at times. It hurts, but usually helps me move on from wherever I’m stuck. Still, it is strange to be the one to inflict violence.

    Take care,
    Kerrie

  • peeperview
    4 years ago

    Oh my God, once again, one of your articles has brought tears to my eyes. Something about you or the way you write really resonates with me. But this one was a punch in the gut truth for me. One that I needed, thank you.
    (Fyi-I Love Brene Brown!)

  • RTGmom
    4 years ago

    Great article Kerrie! I feel so much guilt every day it seems like my migraines are becoming more chronic and of course I blame myself for that like I have control!! It is nice to see and read that I’m not alone. Thank you.

  • Kerrie Smyres moderator author
    4 years ago

    Thank you! I’m sorry you can relate, but am glad you know you’re not alone.

    Take care,
    Kerrie

  • Leynal
    4 years ago

    Wow this is an excellent article Kerrie! I have been wrapped up in guilt for so many years, but this is a whole revelation about shame! I want to explore it more- absolutely. Seems perfect for therapy talk ;)))

  • Kerrie Smyres moderator author
    4 years ago

    Leynal, thank you! I can’t recommend the book highly enough. There are “worksheets” for working through shame that look really helpful.

    Take care,
    Kerrie

  • wdjbaxter
    4 years ago

    I feel like I could have written this. And I am going to have to go and buy that book. I feel so guilty every time I break plans with my kids or have to say sorry “we can’t, mom has a migraine”. It makes me feel like a failure as a mother.
    Finding this website and community has been such a life saver. It has made me realize I am not alone in this.

  • Kerrie Smyres moderator author
    4 years ago

    You are definitely not alone! I’m not a parent, but I hear that same sentiment from so many parents with migraine. Please know that being sick doesn’t make you a failure at anything.

    Take care,
    Kerrie

  • Jewels
    4 years ago

    I could have written this! I consistently feel guilt & often apologize to my hubby & kids for things I miss! Your info about guilt vs. shame really hit home to me! I do often feel ashamed like WHY can’t I get better? WHY doesn’t anything work? It is nice to know I’m not alone. I read your blog a lot, but first time comment here. You & I definitely have a lot in common on chronic migraines.

  • Kerrie Smyres moderator author
    4 years ago

    Thanks, Jewels. I’ve found that the thoughts and emotions associated with chronic migraine are just as crippling as the physical symptoms of migraine. That sounds extreme, but I’m not exaggerating. You’re definitely not alone.

    Take care,
    Kerrie

  • Luna
    4 years ago

    Excellent article even though guilt or shame is not something I have felt about all the losses sustained over the years especially since becoming chronic. I did not sign up for a dysfunctional migraine brain. Happy day to every one.

  • Kerrie Smyres moderator author
    4 years ago

    Luna, I’m so glad you’ve avoided the traps of guilt and shame!

    Take care,
    Kerrie

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