I always wanted to tell my story but I’ve always been afraid of talking about my condition because of the fear of what people would think. But I thought if there are people out there and that are worse then me but still have the courage to do so then so can I. I have learned how to accept the way that I am and to love myself because of it. Although I still do have daily struggles and still deal with some ignorance of closed minded people I try not to let it get to me.
Growing up was never easy, my mother told me about when I was a baby. One of the most shocking ones was probably my birth. I was born with no skin on about most of my body except for on my face. Doctors told my parents that I had a 50% chance of living and if i did most likely wouldn’t have a normal life. As I got a little older i started to grow skin but only in a few places and the few places were covered by large blisters that my mother would have to bandage twice a day which took her 6 hours for each dressing. The thing is every time she would change a wound it would re peel skin off making it hard to heal.
I can not go out in the heat because it causes my skin to breakout in blisters and I easily can become dehydrated extremely fast, also my skin gets dry and can crack. I have always had blisters on the bottom of my feet which makes walking difficult at times and had to use a wheelchair in school because of it. I also have blisters in my fingers and hands which can interfere with daily routines like getting dressed. Pretty much anything that has to to with friction and or heat can cause blistering within minutes.
When I moved to a small town upstate from NYC I started going to public school which I’ll tell you I was not mentally prepared for. Because the fear of me getting hurt by my parents and school administrators I had to have someone with me at all times and had to use my wheelchair. I also had all these gadgets that they had thought would help -_-
This made me center of attention, I was always stared at and talked about there where times other kids wouldn’t want to use things that i had or touch anything that i had touched this even happened and still does in stores. I was called ugly and lazy was even told I had skin cancer. Isn’t that crazy!!!?? When I wore short sleeves or shorts I was made fun of, and told I should never ever show my body also was told that no one would ever want me. Even was picked at in the comfort of my own home, online.
This took a big toll on me, I was isolated in school and didn’t have friends. I would cry at night and always wonder why was I born this way, no likes me and never will. I became very insecure and believed what I was told. When I would change my bandages and get dressed I looked at myself and thought who would want me?
Things did start to get better little by little I Started going to a camp with people that were just like me and learned that I wasn’t the only one going what I was going through. I also realized that there are skin condtions and other forms of EB that was much worse then mine, then I thought hey I really don’t have it that bad. I made life long friends that understand what it is like. Soon i became more open and made some friends, got into dance. An as I went through HS i started not to care what people thought. I realized I was born this way and put here for a reason and honestly wouldn’t change having EB for the world because it made me who I am.
I learned being alone isn’t that bad or not having a million friends, yeah it’s lonely at times but you learn that you don’t have depend on other people for happiness. Having Eb also made me appreciate the small things most people probably don’t. Yeah it does bother me when i hear people complain over the small things or say oh i have a mark on my skin like it’s the end of the world, then i remember everyone has something they are insecure about and ignore it