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Has My Ailment Become My Identity?

The first question I’m asked when seeing family or friends is, “How is your head today?”

Their hearts are in the right place, but the pity in their eyes as they ask is apparent. I must not be covering it up very well that day. Most of the time I lie and tell them, with an appreciative, “I’m fine.” In reality, my head is throbbing from my temple to my forehead, my eyes are watering from the agony, my neck in knots, my vision blurred, and my speech is slurred. But a simple “I’m fine” will help deter the same conversations about my migraine headaches, and their causes, and the surefire remedies, and someone’s aunt who has them.

I’m grateful for the people in my life who truly care about me and my health, but the questions are like salt in the wound. My migraine headaches have become my identity. I’m the guy who has those terrible migraine headaches all of the time.

Somewhere inside, behind the excruciating pain, I’m the loving husband, the fun, active dad of two sweet children, the successful teacher, coach, and small business owner, and the person, who, at times, is feels like he’s literally dying to be himself again.

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

  • gobnait
    7 years ago

    I too can identify with this. I sometimes think that when I meet someone who I may not have seen for a while, the first thing they say is “oh hows your head?” I know they mean well but I feel like screaming “there is more to me than my Migraine, I do have some life, I like to read, go to cinema, talk to me about my children or grandkids” and then they regale you with sure fire cures.. eat a banana standing on your head with one leg hanging out the window. Please look at me and dont just see migraine sufferer I am also a person.

  • reallylost
    7 years ago

    I get this question every day from family and friends. I have had chronic migraines for 4 years now and they pretty much stay the same. I have just started using the term “hanging in there” due to the fact that I do not like lying to anyone. My family understands but some friends and other loved ones do not. I am going through doctors trying to find some way of easing my suffering but it is not looking good right now. But I know exactly where you are coming from.

  • stephaniec
    7 years ago

    i liked this post b/c it shows how we can gently lose ourselves to the pain and not WANT to. i too got into a “fine phase” when i was always saying i was fine no matter what. got convicted (spiritually) of lying and started telling the truth. found out real quick who cared- who was making conversation. now i use terms like hangin in, medium, bad day- and i tell the truth and the people care. while i do get tired of my pain being everyones business sometimes, on bad days i get more hugs and that helps perk my emotions up, at least right then i don’t feel alone. i think i will find it helpful that i started a caringbridge site- i hope.

  • Nancy
    7 years ago

    I don’t talk about my migraines because I feel like people look at me and say there she goes again. I usally say I am fine. My husband is great and really helps me when I have one. Mine are brought on by the weather, I have no control. I have my parents living with me so sometimes I just can’t go to bed and cover my head. Sometimes when I need to throw up the bathroom is in use so I run outside. I really wish it was different, but like the rest of you I have to live with it. I sometimes get tired of taking the meds, they make me so tired. I would love to have a normal life like the rest of my family.

  • Kate C
    7 years ago

    I agree 100%. I don’t mind being asked… But in my life, & personal situations I find people don’t like to ask me about my headaches. I don’t know why either… Maybe its a response to the fact they don’t know what to say or how to react. So I sit there in utter pain w/ my mouth closed, not pressuring them with my condition. Believe me I’d like more people to ask about it!! That way I know they care!! But I can’t change them & their reactions to me

  • lulabelula
    7 years ago

    i have been struggling with this same situation. as my disease takes a stronger hold over me, i find myself having to work harder to remember that I AM more than just this sick shell of a person. i am in there somewhere. going out in public, to work, to children’s events is difficult enough when you feel horrible and know that you look horrible, and like you said people’s hearts are in the right place, but the constant reminders…
    i more often than not well up with tears whenever i am asked how i am feeling, as much an emotional response as one of physical pain.
    it is exhausting to feel so awful all the time, and sometimes you just want to say hi to a friend and chat over coffee and the latest episode of some crappy tv show you both love or a baseball game or whatever, and not ever mention the M word. and just be a normal person.
    sometimes.

  • mpana
    7 years ago

    I agree. It’s hard to relate your experience to others or even define your migraines to yourself at times and I think it can cause us to feel misunderstood. It’s been difficult at times for me to separate “myself” from my migraines (I have migraines almost daily), but I think the most important thing is to resist identifying with labels (which is tempting to do since migraines have a million faces). As time goes by, I’ve learned to identify with the good things in my life rather than the limitations regardless of how I feel that day. Thank you for writing about your experiences! It’s good to hear that others go through the exact same thing : )

  • zeenac
    7 years ago

    I can relate to what you’re saying. It’s definitely become part of my identity. I’m not really sure that’s a bad thing. It just is. I am thankful that some friends do ask how I feel, but sometimes I can’t even answer that. It’s not black or white, do I have a migraine or not. How is my head? Um…I’m a little foggy, dizzy, etc. It just occurred to me that we would not ask a diabetic how their blood sugar was or an epileptic about how their seizures have been. We might ask them, in the middle of a conversation, about how their health has been.

  • Janet
    7 years ago

    My heart beaks for you just and mostly empathizes..I stand with you…suffering for 36 years….we live a plane ride away from all family…and by now family doesn’t want to hear about migraines anymore. I lost my best friend last February …just 4 months ago…she took her life because of migraine pain and a husband who didn’t understand them and divorced her…for him, get that…for him, she took too many medications to keep her migraines in check. Michele left beind her mom, brother, 2 beautiful daughters and me…I cry out to her every night.

    My husband thinks because I can bear to watch tv in the evening I’m fine….I’m tired of rushing off t bed where I don’t sleep and a migraine will continue or join me later…I haven’t slept in 4 months and sadly my docs don’t get it…..I don’t remember me.
    Janet Jones Las Vegas

  • reallylost
    7 years ago

    I am so sorry for your loss. But I can say that I have been there. There are times in my life when the pain is so bad that I just want to end my life. And I have only been dealing with this since my late teens and now I am 34. But I could not do that to my family or myself for that matter. Life is too important even if you are suffering. If you ever need to talk, I will be here to listen.

  • stephaniec
    7 years ago

    so sorry for your loss. i have a few close friends who also suffer and i know that suicide in migrainers is higher then other ailments, i cant imagine your pain on the emotional level but i can stand with you. you are not alone. you have someone who cares, i care. and more then that i understand- constant daily since dec with very few days 5 or under. it is very much a struggle to keep your identity and not feel as you are pulling others down when they ask. but if you want to talk i’m here.

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