The story of Shane
Hi my name is Shane, I am 17 years old and I have hypermobility type Ehlers-Danlos syndrome. 17 is young to get diagnosed as well as it is the prime of most people’s lives. Although I have severely progressive for 6 years. This past year I went from some walking to needing a mobility device anytime outside of my home. I use scooter for when I want to go into public and walk a distance I never would be able to. To be honest I never thought this is where I would be at my age. Missing out on prom, or a class trips, or going out with friends. But being disabled, or trans and or queer isn’t just what I am, these are aspects of my life that make me me but not my everything. I try to be a happy go lucky kid and be me on daily basis. I can’t control this disease but I can control is my attitude. Of course I am scared and I know this isn’t going to get better but I am not going to let my disease hold me back. I am junior in high school. I am going to go to college and get a degree and from there I am going to figure out what comes next. This might suck and to be honest of course it does but you know what I made some of my closest friends because of my disease. As well as who are my real friends. The ones who are going to be there for the long run and who stand by you even though you may not be able to do what they can do but willing to do what you can. Plus be there to support you when you need it. Due to my disease we got a dog to possibly become my service animal. He is my everything. Coping with this disease is really hard but he has pushed me. When I have a hard day I know there is something waiting for me when I come home. He doesn’t see me as a disabled person, he loves me unconditionally even with my flaws and will always stand by me even when life gets hard. My doctors told me for years that it was just growing pains. Or that the pain gets better. Or EDS doesn’t cause pain. Or that the pain was in my head. Or they wish I had cancer because at least there was a chance of getting better. I hope for the future that more doctors understand my disease and know how to deal with it. I want to be more than just my disease. Or the kid who uses a cane or scooter. I am so much than my disease and I want to show the world who I really am. And how nothing will hold me back.
This is my story,
Shane