You never really expect it to happen to you. My sister has one so I thought one in the family was enough. Sure enough, when I was a junior in high school, I was diagnosed with a chronic skin condition.
It made my skin terribly sore to sit in, and I decided I hated my own body for attacking me and leaving me defenseless. What was worse was that there is no cure for my condition and very little research has been done on it. It’s hard to explain to other people and downright embarrassing. It almost looks like an STI and is terribly hard to show to other people, so I barely have it.
One of the only known ways to avoid this is by not wearing tight clothing. In high school, my school uniform was khaki pants that didn’t breathe, and you could tell I was bleeding through them. I got a doctor’s note to wear yoga pants, but that left me vulnerable to people’s stares and questions as to why I had to wear yoga pants. Explaining to people that I was exposed to essentially raw skin under my pants and shirts wasn’t going to fly, so I opted to laugh along with their comments or the once-simple “injury” excuse.
It wasn’t until I found a Facebook page with people who were also struggling that I finally didn’t feel alone. Through the Facebook page, I found solutions to this problem that other people have tried and tested and I in turn have tried and tested as well. Since few doctors know what it is, I have tried every possible dermatologist for a solution.
With the extreme option a skin transplant, I’ve had to think seriously about my life decisions, like going back to school. I go to school in an area where there aren’t many doctors and the dermatologist came one Friday a month. I can safely say that I did not choose the best option for my care.
It comes and goes in terms of severity, so I’ve felt great for months followed by weeks where I could barely move. While it may seem like nothing can be done, I’ve been working to educate my own doctors and seek out treatment plans. I have raised money for research and donated to other causes that can help bring relief to my condition and the suffering of others.
In the end it makes me stronger and I become a fighter.