You never really expect that it will happen to you. My sister has one, so I thought one in the family was enough. But sure enough, when I was a junior in high school, I was diagnosed with a chronic skin condition.
It made my skin horribly painful to be in, and I decided I hated my own body for attacking me and leaving me defenseless. What was worse was there is no cure for my condition and barely any research on the subject. It’s hard to explain to other people and downright embarrassing. It almost looks like an STD and is horribly difficult to show other people, so I barely have.
One of the only known ways of preventing it is to not wear tight clothing. In high school, my school uniform was khaki pants that were not breathable, and you could see if I bled through them. I got a doctor's note to be able to wear yoga pants, but that left me vulnerable for people’s stares and questions as to why I got to wear yoga pants. Explaining to people that under my pants and shirts I was exposed to basically raw skin was not going to fly, so I opted for laughing along to their comments or the ever so simple “injury” excuse.
It wasn’t until I found a Facebook page with people who were also struggling that I finally felt not alone. Through the Facebook page, I have found solutions to this problem that other people have tried and tested and I have in turn tried and tested also. Since few doctors know what it is, I have tried every dermatologist possible for some sort of solution.
With the extreme option being a skin graft, I have had to seriously contemplate my life decisions, such as 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. Safe to say I didn’t choose the best option for my care.
It comes and goes in terms of severity, so I have had months of feeling great followed by weeks of barely being able to move. Although it seems like there’s nothing to be done, I have worked to educate my own doctors and seek treatment plans. I have fundraised for research and donated to other causes that might help provide relief for my condition and others suffering.
At the end of the day, it makes me stronger and makes me a fighter.
