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Migraine Awareness Blog Challenge #17: Father Knows Best

Dear family,

This is such a hard letter to write, because I have spent the majority of my life trying to hide how I feel from the people that I love. Not only how I feel physically, but emotionally as well.

I love you all. But I want you to know how much it hurts to have to remind my family over and over again of the way I have to live to protect my health. Each time I have to remind someone of my extreme light sensitivity, the inability to eat *normal* food, the difficult things for me that are so simple for you, or that I am in pain… I am reminding myself of these things I try so hard to forget and move past. I remember that I am a burden to those who love me and how they’ve had to change their lives around my needs. How I am different, and less than I should be. How my life isn’t at all what I had planned and worked so hard for.

Talking about these things reminds me of the great losses of my life — the things stolen from me by chronic illness. It reminds me that I live a life beyond the fringe and in the shadows — misunderstood by those I care about most. I am among people that care about me, yet I am alone.

I can’t tell you how much it hurt me that only one family member signed the petition to Congress that could result in research and better treatments for me and those like me for generations to come. To me this was the outward sign of truer inward feelings, and it’s true, I was hurt deeply. This was a rejection that made 30 seconds of your time more important than a lifetime of me struggling just to breathe.

There are some people who, no matter how hard we try, simply won’t ever understand what it is like to be chronically sick. They are blessed with good health, and we live with stigma. It is that reason that I have chosen to stop wasting my life trying to make my loved ones understand and just live my life the best way that I know how.

I will forgive that it wasn’t worth your time to try to make my life better with a signature. I will continue to try to forget what I could have been had I not become chronically sick. Instead of being overcome with sadness at the parts of my life that are gone, I choose instead to focus intently on those amazing parts of my life that still remain.

I did not finish school as I’d dreamed, but the scope of what I am doing now far surpasses anything I had plans to do before I got sick. My path changed dramatically, but that doesn’t make it worthless. And maybe I’ll get better and will still get to go back to school… who knows!

I still have goals and dreams. I may be a disappointment to you, but I am where I am supposed to be right now. (Take THAT you two instructors who told me I was not worth your time!)

I am proud of what I have overcome, the monsters I slay each day, and the people I am able to help by sitting at this computer. I am proud of who I am, even if I am just a little person in a big bold world.

The 2 ton elephant of chronic illness will still be in the middle of the room when we come to visit, but I will smile and be present and happy for that moment, regardless. I refuse to waste my time on earth in regrets.

Despite all this, I will not stop praying that someday, somehow the light bulb of recognition will flash however briefly over your heads. I would never wish a Migraine or chronic illness on anyone, and I pray it doesn’t require a major health scare to make that light bulb appear.

Thank you for loving me and caring about me despite the fact that you don’t understand me. I am blessed to have people who care about me, like you, in my life. You have helped make me the strong, independent person I am today. Despite frustration, disagreements and misunderstandings I would have it no other way.

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


  • Dee
    6 years ago

    This has been a big issue for me too Ellen. The way that I have learned to deal with it is by choosing myself over them and too bad about the consequences when I have already explained my condition and how it can limit me in many ways. Its exhausting having to explain. I lost a best friend years ago due to her inability to understand but thankfully, my family do understand (my mother learned that I wasn’t just getting “headaches” after taking her along to a visit to my neurologist appointment). Please know that you are helping people with the work that you do. It is hard to stay positive when living with migraine disease and yet that is what you inspire others to be.

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