Invisible Illness, Invisible Person

Having an invisible illness sometimes feels like being an invisible person. This happens in so many ways:

  • When I tell someone I’m getting a migraine and the response is, “No you’re not.”
  • When someone changes the subject every time I mention anything at all about migraine – even when what I’m saying is that I feel better than I have in years.
  • When someone jokes that migraine is all in my head.

None of the people who’ve said these things have had bad intentions. Maybe they fear illness or don’t know how to talk to someone who is open about a taboo topic. Perhaps they honestly believe I’m making a big deal over “just a headache” or that I’d get better if I tried harder. Whatever beliefs drive their behavior, they all have the same outcome – I wonder if that person has any interest at all in me or what’s happening my life.

While I don’t want to be all-migraine-all-the-time, migraine is a part of me. When a loved one doesn’t acknowledge how drastically migraine has changed my life, I feel like my true self is just as invisible to them as my illness is. I want my loved ones to see all aspects of me, not only the parts that don’t make them squirm. When someone ignores my reality, brushes off my experience or tries to “fix” my migraines, it tells me that they don’t care about me, they only care about who they want me to be.

The people I’m closest to now are those who make the effort to see how migraine has shaped my life. They’re the ones who tell me I’m brave, that I’m moving mountains, that they are in awe of my strength. I love them not because they praise me, but because they see all of me. The good, the bad; the strong, the weak; the optimistic, the downtrodden.

I don’t want to be seen only as a person with chronic migraine, but to have all facets of my identity acknowledged and respected. Migraine isn’t all that I am, but it’s a huge part of my life. Migraine makes my life extraordinarily difficult at times, but it also makes every triumph even greater. It has taken me many years to believe the friends who tell me that I’m strong and brave. Now that I see it, I don’t want to waste my energy on anyone who refuses to look.

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

View Comments (6)
  • angee01
    5 years ago

    I suffer with chronic migraine headaches and although my fiancé is extremely supportive I feel so alone. To make matters worst my supervisor feels it’s a joke. I just feel so depressed and alone. reading everyone’s comment make me feel that I am not alone.

  • Colleen Meegan
    5 years ago

    I have horrible mastoid pain, starting only recently (I am 63) that accompany my migraines. My migraines used to be perimenstrual but now they are almost constant: have to live under a pillow for hours at a time. This is getting old. Sumatriptan injection works wonders, but with no insurance I am doomed. Sucks to be me. Botox with no insurance is also not an option. Oh well….

  • lulabelula
    5 years ago

    tears streaming down my cheeks.

    thank you for this.
    for putting in to words what just comes out of me as sadness.

    you rock.
    you really do. a lot.

    we all rock.

    and roll.
    we all crawl in a hole.

    you’ve helped me remember
    how i climb
    my way
    out.

    sincerest gratitude.

  • coygroup
    5 years ago

    I am “lucky” to have other migraine sufferers in the family, so I’m not alone, and my wife is very supportive. One of my biggest triggers is exercise/exertion, especially where my heart rate gets up (walking is usually, but not always, fine). What gets me is when “experts” (even a “migraine specialist” in one article I read) insist that you just have to exercise through the migraine. Excuse me? I want to scream “you must never have actually had a severe migraine and tried to exercise, or you would never be saying that!” Of course, screaming would probably just give me a migraine, so never mind 🙂

  • Constance Boone
    5 years ago

    I’m so glad I found this website and the people on it. I thought I was alone in journey with chronic migraines. My family if finally starting to understand what I go through. Every article you post that is relevant to what I go through or is about chronic migraines, I print out and give to my Mom. She says she had no idea what I was going through. I feel like I finally have a support group. I’m still waiting to see if I get my disability. I was turned down initially and am in my first appeal stage. I can’t believe that they don’t recognize chronic migraines yet. Anyway, thank you for your words and comfort. God bless!

  • Arlenetrack
    5 years ago

    We should feel strong! We fight hard almost daily, which people don’t understand. If I stay home, people say go out more and they will go away. If I go out, through the pain, as they are a daily occurrence they think I’m exaggerating. I try and find joy through my pain.

    I love your outlook on life! Thanks for the great post.

  • Poll