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The Gift CRPS Has Given Me, Despite All It's Taken Away

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Winter is coming. For someone with complex regional pain syndrome (CRPS), this is knowing that pain, torture, and sadness are reaching out to grab ahold of you. Recently I have reached out, looking for someone, anyone, who has the “suicide disease.” This is my sixth winter battling the agony, the horrendous pain that ranks higher than childbirth on the McGill Pain Scale. In my search, I stumbled across so many pages of voices shouting out in the dark –screaming for help, crying for a friend, “burning for a cure.” My eyes skimmed thousands of comments, people telling immaculately detailed stories of what they would do, or would be doing, if CRPS hadn’t found them.

What would I be doing right now if CRPS had never found me? I would be on holiday break from Berry College. I’d be sitting at home with my mom, wearing fuzzy socks, and drinking warm tea while some ancient movie blares from the television.

Instead, I’m sitting here alone at a totally different college.

Imagine having to tell your mother that you can’t hug her because it hurts you. Imagine watching your mother grow old and knowing that you may never get to hug her again before she goes. Imagine wanting to fall in love and knowing it may never happen. Imagine knowing you can never have kids, that they are an impossibility. You’d never be able to stand the pain, the insufferable pain of a child hugging you, or the stifled screams because of the vibration their voices make. It’s difficult to hold back the burning tears every time you must distance yourself from yet another person you love, simply because of this illness.

This is a piece of the horror that CRPS warriors speak of. When people talk about disability they often think it’s insulting to say that someone “suffers from [illness].” I say that it’s insulting to say that I don’t suffer from it. CRPS is an abominably suffocating illness. It changes your entire lifestyle — from the makeup you wear, to the types of clothes you buy, to the friends you have, to the career you choose.

What people haven’t acknowledged is the surreal effect it can have on your life if you surrender your weapon. Thanks to CRPS, I have a genuine concern for those around me. I learned to have empathy for others because life isn’t a competition. Others deserve help not if they are good people, not if they are pleasant, but simply because they are human. I have learned to advocate for myself, as well as others. I’ve learned to not be accepting of things that are discriminatory. I have learned that a changed life is still a life. I have learned that doing things differently is not doing it the wrong way. I have learned to be proud of the things that I can do on the days that I can do them. I will not have learned helplessness.

I have CRPS and I refuse to say I can’t.
I have CRPS and I can.

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Getty Images photo via Marjan_Apostolovic

Originally published: January 5, 2018
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