She Changed How I See My Disability With a Pair of Socks

I’ve battled Complex Regional Pain Syndrome (CRPS) in my left foot for nearly 15 years. I was diagnosed in 2000 at 13 years old, as the first pediatric in the state of Maine to have CRPS.

I was a freshman in high school, which is a difficult time without an invisible disability. I had the support of my family, but the bullying and teasing at school was relentless. How do you teach young people about a condition they’ve never heard of before, and have them take you seriously? My young brain couldn’t figure out the answer to that question. I just pushed on and hoped that one day, I would meet people who would understand and accept me, and CRPS.

I was in and out of remission for many years. Whenever I relapsed, I tried to keep it as much of a secret as possible, because I didn’t want the teasing to start all over again. In college, I did my best to educate my peers about CRPS. It was easier in college, because I majored in Therapeutic Recreation, so everyone in my classes were there to learn more about helping people with disabilities. My college classmates were more receptive to learning about CRPS, which was a huge weight off of my shoulders, especially as I relapsed during my junior year.

After going back into remission before my junior year ended, I dealt with other chronic pain issues from injuries I sustained, but my CRPS was pretty much in control. Then CRPS came back with a vengeance. For the first time since my diagnosis, CRPS spread to more than just my foot. It quickly spread up to my knee, then to my right foot, up to the knee. It was frustrating to have to put graduate school on hold, due to the pain, medication fog, and inability to concentrate on anything besides the pain. I hated CRPS, and was angry that it came back.

That’s when I met (online) another CRPS warrior: Melanie. She’s half my age, and had been diagnosed the year prior to me meeting her. She is spunky, full of energy, and extremely smart. She also battles the CRPS monster, and started, like me, at a young age.

But being half my age didn’t stop her from teaching me about the power of positivity. I had never really had the positive mindset while in a CRPS relapse, because I had learned in high school that people tease and are mean, especially when it comes to the unknown, which left me bitter.

See, Melanie decided to change her day of diagnosis from a date to be sad about, to a date to celebrate! She created “Crazy Sock Day” to raise awareness of CRPS, instead of being sad and bummed that another year has passed without remission.

I immediately got involved with her special day, because she reminded me that having a disability isn’t something to be sad over… it makes us unique, and we learn to find different ways to do the things we want to do. Having a disability gives us the drive to raise awareness of under-recognized conditions!

So, yes, a young little lady taught me to be positive about having CRPS. That’s not to say either of us don’t have terrible days, full of pain and sadness. However, she taught me to look on the bright side, which is sometimes the only thing to get me through my days. Something as small as “Crazy Sock Day” has taught me so much!

I’m no longer upset when my diagnosis date rolls around. Instead, I think about all of the positive things I have going for me in life. Yes, I may be in pain, and I may struggle every day to keep pushing myself to get through each day. However, I am married to a great guy who supports me, I’m surrounded by friends and family who are there for me, and most importantly, I’m alive! I may be in pain, but I’m alive!

Melanie and I have had the opportunity to meet in person, once almost 2 years ago, and again very recently. She’s an absolute sweetheart, and,though she probably doesn’t realize it, has taught me so much since my relapse a few years back.

I wear my crazy socks proudly, because of her, and try to be more positive each and every day. Learning doesn’t always come from someone older than you. Sometimes you can learn the most from those with younger, more open minds, like I did with Melanie!

Thank you, Melanie, for teaching me.

The Mighty is asking its readers: Describe the moment someone changed the way you think about disability and/or disease. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.