Why I’m Tired of Writing About My Disorder


I am 20 years old. I am a college student. I am studying journalism and media studies and theater arts. I am a gymnast. I am many things, but I am not my illness.

I have recently been writing blogs and articles for The Mighty and for the Reflex Sympathetic Dystrophy Syndrome Association about my experience and journey with my chronic illness, reflex sympathetic dystrophy syndrome/complex regional pain syndrome. After each article comes out, I am constantly overwhelmed by the amount of support I get from not just my friends and family, but also from the RSD community. People have told me that my articles have helped others with RSD and without to better understand it. However, it is always followed by, “When is your next RSD piece coming out?” Everyone automatically assumes that all I write about is my disorder.

Now I realize it is somewhat ironic that I am writing a piece about my chronic illness and not wanting to write about it. But it is still important. As a journalism student, I do a lot of writing. There are so many interesting things to write about, yet I always choose to stick with RSD. One of the main reasons I write about my disorder is to spread awareness and help others better understand what RSD is and what I go through. I oftentimes struggle to talk about it face-to-face. But now I feel that everyone thinks that my RSD defines who I am. But I am mostly tired of writing about RSD because it makes it harder for me to separate who I am from my illness. And that to me is terrifying.

I lived a “pain-free” life for 12 years. It wasn’t until 2008 when I got my injury that lead to my RSD. And then past that, it took another five years for me to get diagnosed. I would be lying if I said that in those five years, I did not change based on how anxious I was to find an answer as to why I was always in pain. Looking back on it, I can see where I lost sight of who I was. My main focus for so long was trying to find an answer. When I finally did, everything changed. I tried to hide it from people, pretend that pain did not exist in my everyday life. In my experience, when I share my RSD with new friends, that’s all they want to talk about. It makes me wonder if that’s all there is to me. Maybe being in pain is what everyone knows me by. Yes, obviously being in pain every day has changed how I do things and changed my outlook on certain situations. But has it really changed who I am?

No one should be defined by the struggles they go through. I do not want anyone to read my articles and feel bad. There have been so many times when friends have asked me, “How do you do it?” and “How are you always happy?” I purposefully pretend that nothing is wrong just to avoid thoughts like that. The more I hear this, the more I question myself. I went from never telling anyone about my condition, to feeling obligated at some points to tell people that I am in too much pain to move. I start to feel that my loved ones get tired of hearing the same thing over and over again. Writing these articles just adds to the discussion. How are people not tired of reading about my RSD? This belief pushes me into a shell and prevents me from telling my friends when I am in need of help.

Then a terrible thought crosses my mind and makes me question if my friends are being honest with me. I have lost friends because of my disorder. They no longer wanted to deal with me. I was a burden who wasn’t able to do everything everyone else could do. I get it. You cannot even being to imagine what my pain feels like. You aren’t living my life; you are simply watching me get by. But instead of giving me the cold shoulder, how about you attempt to think about how life is like walking in my shoes. Believe me, that walk would be excruciating.

Sometimes I will even try to make myself believe that I don’t have RSD. I want so badly to not have it identify me that I make an effort to ignore it. This usually does more harm than good. By thinking like this, my entire mood changes and I get angry with myself. Everything good seems so far out of reach and the idea of living a pain-free life feels impossible.

At that point, curling up into a ball seems like the best idea. I don’t expect anyone to understand why I feel the need to step back and just close my eyes. It’s very easy for me to get overwhelmed and frustrated. My friends who witness this try to help and I usually just shut down. I would like to apologize to them. I know it’s not easy to be around me when I am like this. But know that I do hear you and appreciate everything you say. I don’t want that to be who I am. The more it happens, the more I fall into that thought of letting my RSD define who I am and what I do.

handwritten note that says don't let your struggle become your identity

Through all of my struggles there are things that I love about my articles. I have had so many people reach out and tell me how helpful my articles were to them. Others use the words inspirational and encouraging to describe me. My writing has connected me to other members of the RSD community and helped me feel like I should not be ashamed of my disorder. Although I am tired of writing about RSD, I will never stop. This chronic illness is a part of who I am and affects my life. I can try to hide it all I want, but the reality is, nothing will make it go away. The best thing to do is to embrace it and use it as a platform to help others who have the same struggles as I do.

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