“I started to get sick when I was around 4 years old, I’m currently 16. This life is all I’ve ever truly known; being in pain everyday. I lost my hearing in my left ear when I was 6, almost 7 years old. I have something called Behcet’s Disease which is rare, fibromyalgia, SVT, chronic migraines, single-sided deafness, and dysautonomia. Even though I’m in pain everyday, I still have fun and am able to enjoy all the things that I’ve gotten to do. I love to travel, dance, photography, and my friends and family. I have been able to spread awareness through school and volunteering events. Every year I present to my classes about my health and how you should be kind to everyone because you never truly know what people are going through. Whether it’s something to do with mental health or you are just going through a rough time.
One of the hardest things for me was dealing with the ‘You look fine!’ when I tell people that I don’t feel good. Sadly that statement comes from everyone that doesn’t personally know you. Just because you look happy doesn’t mean that you aren’t in pain or going through something. Even doctors won’t believe me sometimes because all my lab results are good and they can’t see anything that could be causing my pain. Another thing that has been hard is when doctors or people suggest that I’m just depressed and should see a counselor. I used to go to a different hospital and before I switched I was in a very bad flare; everyday waking up with a pain level of 10+. I had emailed one of my doctors asking for help because I couldn’t function due to the pain I was in. He emailed back with the number for a suicide hotline and said that I should call and talk to them. That was the first time that I screamed and cried out loud out of frustration. That day I made the switch to a different hospital and they were able to help me. That flare was one of my worst ones yet and it lasted for about a year. So, if you are struggling with being heard or people aren’t listening, just know you are not alone.”
Kayliana
