Why I Couldn't Wear Jeans on Rare Disease Day
February has come and gone, and although it is a short month, it was a little bit longer for 2016. February 29 is a rare day that only comes once every four years. The last day in February is known as Rare Disease Day, and it just happened to coincide with a rare leap day this year. Rare Disease Day is a day to bring awareness to all of the rare disease out there and how they have an impact on daily living.
One way to raise awareness is to wear your favorite pair of jeans. Although I myself suffer from a rare disease, I could not partake in wearing jeans.
I wanted nothing more than to wear my jeans with that cute knit sweater I have, but I knew the minute I pulled them on, I would be in misery for the rest of the day and into the next.
Complex Regional Pain Syndrome causes a variety of symptoms, but the main symptom is pain. With this, comes skin sensitivity. I constantly have a burning and electrical pain running through my body, but luckily the skin sensitivity can come and go. There are days when my skin is so sensitive that I am unable to tolerate a sock or sheet, and there are other days when I can.
Although the sensitivity never fully goes away, it has its ups and downs. For the last year and a half I have lived in leggings, yoga pants and sweatpants. There are only a few times I can remember actually wearing a pair of jeans. The rough material and hard texture make wearing jeans nearly impossible. If there is a day I am able to wear a pair, I can guarantee through the day and the next day, the sensitivity will continue to increase to the point I have to take them off and put on my soft sweatpants. If I do wear jeans, they are a particular brand with soft denim that I can tolerate better.
Even though I couldn’t participate in the typical way, I was able to inform people of what this day means to me and the millions of other people who live with rare diseases. To everyone who did wear jeans on February 29 and/or raised awareness in another way, thank you! You are helping more people than you realize, and I hope eventually we will not need to have a Rare Disease Day because every doctor will know about them and be able to treat them.
The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? 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. Check out our Submit a Story page for more about our submission guidelines.
At the age of 14 and as a freshman in high school, Nora was struck with a mysterious illness that would cause chronic pain along with many other symptoms. It wasn’t until she was 16 that she was finally diagnosed with Complex Regional Pain Syndrome (CRPS) and Joint Hypermobilty. She was then diagnosed with Late Stage Neurological Lyme Disease and Lyme Carditis 17 years after the initial tick bite. Nora began writing for The Mighty over a year ago to raise awareness for her diseases and as a way to cope. Today, she has over 25 stories published and many shares and comments on each story.
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