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Why I Write About My Migraines Even When I'm Feeling Better

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I’m in a period of relative stability right now, for the first time in about five years. I am still getting migraines, but it’s easier to deal with them, and I am not as incapacitated and debilitated as I was before. I am so thankful for that. For the first time in years, I’m planning my future, applying to jobs and internship programs without having to worry if I won’t be able to follow through. It’s a relief, actually, to actually be able to think like this. I didn’t have this luxury for the second half of my teenage years. I mostly just tried to make it through each week.

I’m still a part of many support groups online, and I write for my blog and The Mighty about my experiences with migraines. It’s become helpful for me to write, because when I was really sick I basically lost my voice. I lost my ability to speak coherently, write, read and focus. Now that I have regained my abilities to function, I am trying my best to speak about my experiences because I know how isolating and frustrating it can be to lose things we all take for granted in life.

Nowadays, I feel a pang of guilt when I sit down to write. I feel a bit hypocritical sometimes, because I am not as sick as I used to be. I think of all the people who are currently sick, and how I am so lucky to be in the place I am in right now. I get so caught up in comparing myself to other people and their illnesses that I forget I, too, went through hell. Just because I am relatively healthier now than I was then does not mean my experiences and my feelings are invalid.

We need to stop comparing our illnesses in terms of how severe they are, because chronic illness affects everyone differently. I’ve had people talk to me and say, “Oh, I get migraines, but not as bad as you do.” Why do we feel the need to qualify our experiences and apologize just because sometimes we meet others whose conditions are more severe or “better” than ours? There’s no prize for being the sickest, no title or headline for “winning the sick game.” No good can come out of negative comparisons. We already deal with enough shame surrounding our illnesses. All of our experiences with chronic illness matter, and we need to remind ourselves of that.

I share my stories about my hospital experiences and the hundreds of med trials I’ve been on not to make other people feel bad for me, but to just share my story. Not to compare, not to analyze – just to get it out there.

I often have to remind myself that for me, my illness was bad. When I was at my worst, I didn’t leave my house, slept for 15 hours a day and could barely leave my bed or even walk down the stairs. I lost everything about myself I loved. I lost my extracurriculars, my academics and all of the hopes and dreams I had growing up. I thought I would never be able to do anything meaningful with my life because I could barely function. I lost my identity. My chronic illness became my identity.

I’ve spent the last two years rebuilding myself from scratch. Who I am now is completely different from who I was before I got sick. But I went through a period where I had to deal with everything I couldn’t mentally deal with when I was sick. I’ve experienced the helplessness, the loss of identity and control and the medical traumas. It’s a lot to deal with, for anyone. For me, writing about my experiences was a way to think through my life, a way to cope with the cards I’ve been dealt. I feel very lucky that right now my life is a bit better medically than it was for most of this year, and exponentially better than the last five years of my life.

I am alive. That’s how I often describe how I’m doing these days. I’m alive. I’m getting through everything, one step at a time. My experiences are part of who I am, but they have also shaped me into the person I am today. I’ve known what it’s like to lose almost everything that’s important to you. It’s such a weird feeling knowing the world is at my fingertips, for the first time in forever. There’s still a part of me that’s terrified I’ll lose everything again. But if I live like that, I will never be happy. I’ll always be scared, terrified to dream because of how easily it may be taken away from me. One of my good friends has a saying: “if your dreams don’t scare you, they aren’t big enough.” That dream could be mustering up the courage to talk frankly with your doctor about a treatment you’ve heard about, planning an outing or, for me, looking into summer public health internships. I’m just starting to realize I can dream again. I hope you all can, too.

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Image via Thinkstock.

Originally published: December 20, 2016
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