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Why It Has Taken Me 13 Years to Write About My Chronic Pain

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I don’t really talk about my chronic pain a lot. I was diagnosed with reflex sympathetic dystrophy (RSD) 13 years ago, at the age of 12, following a car accident on Christmas Eve. Family members know about my condition, as well as many people from my childhood. But those who entered my life in the last several years? Odds are, they don’t know about it.

When I tell people about my condition, many question my the validity of it or look at me differently than before. Many get confused because I can do something one day, but can’t the next. So, for the last 10 years or so, I’ve decided to keep my pain on the down low — unless someone really has to know about it.

But more than that, I’ve struggled to write and talk about my condition because I do my best to find the positive in every situation, and I just haven’t been able to find that positive angle with RSD. Instead, when I think of my chronic pain, it’s easy to go to a dark place full of struggle… Until today.

Last night I was having dinner with a friend. As we were leaving, my friend mentioned something about not being able to touch my right arm and shoulder. I was baffled that she remembered that my pain is affected when others touch my arm and shoulder. Even when people are told several times, most still forget. Yet, she remembered.

That’s when I realized the beauty and positive moments may have nothing to do with my actual pain — but everything to do with moments surrounding it.

Beauty can be found in the moments when my friends remember, “I can’t touch your right side — I don’t want to make you hurt more.” There’s so much value in moments like that. You know you your friend is a keeper when they find just as much importance in the details as much as you do.

The blessings come, knowing my mom has been by my side every step of the way. She’s never questioned my pain or doubted me. She fought and advocated for me at the age of 12, and still does the same for me at the age of 25. As a teen, she sat by my bedside as I slept, praying for me. When I couldn’t succeed in the public high school system (even with a 504 plan), she pulled me out and sent me to a charter school…where I excelled with pride.

The joy comes when I know that, although my pain is spreading and my symptoms are constantly changing, I have a doctor who believes me — and won’t give up on me. Even more so, she doesn’t just care about my symptoms, she cares about me as a person. She remembers personal things unlisted on my medical charts that I’ve told her during past appointments, and she asks me for updates on my life’s adventures. She is completely invested in my health, and in who I am as a person.

Comfort can be found in my job, as an editor for The Mighty. For the most part, for 13 years, I’ve kept to myself when it comes to RSD. Unless I’m at an doctor’s appointment, I don’t really talk about it, write about it, or even Google it. Yet, as I edit story after story of people fighting back against the condition, fighting for hope, I’m reminded that I am not alone. I don’t have to keep to myself. In my two months at The Mighty, I’ve started to intentionally read more stories from people in similar journeys, and I joined two support groups on Facebook.

The encouraging moments can be found when people who know reach to give me a hug, reaching for my left side, instead of the right.

Perspective comes after time passes. While I couldn’t do the typical activities most teens participate in, and I struggled not being able to do the same things as my peers, I invested what I could do. I wrote and became a photographer… And I became good at it. Several years after my diagnosis and years spent invested in my writing, I am now an editor at The Mighty. I am writing a book, and I run a blog. My photography has also come in handy in several ways, ranging from doing an internship in London, photographing disaster relief efforts in Japan after their big tsunami, and taking pictures of families and friends.

The positive can be in sharing my story, helping others realize they’re not alone. There’s so much power in sharing our stories and connecting with others. That, alone, is enough beauty in the midst of the ugly and difficult days.

I easily blog and share my story about my journey with my facial difference, a port wine stain birthmark, but that’s because I’ve been able to find the joy. I have an endless list of birthmark jokes, and I’ve learned a lot of important life lessons that I wouldn’t trade for anything. But my chronic pain has been a struggle, and after 13 years, I’m finally ready to talk about it… And I’m thankful for the bit of light that now smothers a portion of the darkness.

The beauty and positive doesn’t have to come from the pain itself. They can come from the everyday, small moments.

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Originally published: March 28, 2017
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