Today, I came across these photos of a woman who began documenting her life in a series of photos called, “Self-Portraits”. In the photos she was showing some of her most personal moments.
Although I am not overweight, I really found myself identifying myself with this woman. I have always been very self conscious. I have a genetic disorder called Neurofibromatosis (NF). It is not a disease but a disorder of the nervous system that causes tumors to grow on nerves. It presents itself differently for everyone but one of the symptoms causes skin changes and deformed bones. For me, this is the case. It is not contagious. NF causes tumors which are growths of excess tissue from the nervous system. Some people, like me, develop neurofibromas under the skin, which appear as “bumps”. They are not usually painful but I find them ugly. I have fibromas all over me. Most of them are small but they can range in size. They are on my hands, feet, neck, stomach, back, legs,…pretty much all over. This has made me an extremely self-conscious person. I wear my hair long and usually draped over my shoulders. I find that it helps me “hide” behind it. I love winter, when I can wear long sleeves and sweaters to hide my arms. I wear a tank top under all of my shirts so that if my shirt raises to reveal skin, instead you just see another shirt. I have one on my chest so I will NEVER wear anything with a v-neck or low cut. I spend way too much time pinning my shirts so that if I bend over, no one will see it.
NF can present itself it many different ways, such as learning disabilities, deafness, and blindness. I try to remind myself that I need to stop being so vain because for me, the only affect that I have are “the bumps”. I know that it could be so much worse. I can walk, hear, see… I have never been teased or mocked for it. Most people, especially children, are just curious. They want to know if they can feel them, or if they hurt. I usually just tell them it is how I was born, sort of like a bumpy freckle. The best thing about kids is, once they have an answer, they go on and forget about it. I wish it were that easy for me.
There is nothing that can be done for it. Yes, they can be removed, and I have had some of them taken off, but there is no way to get rid of all of them. Some people who have them removed, wind up getting more of them because they grow on affected nerve endings.
I have learned to live with it. I am aware of them ALL of the time. When I talk to people, even though I know that it is all in my head, I think that all they are focusing on are the “bumps”. My husband doesn’t care. He tells me that I am beautiful everyday. I just don’t feel it. I try to. I really do. I look at myself in the mirror and don’t see it. I am embarrassed to say that I am mean to myself. I call myself ugly names that I would never, ever speak to anyone else. I sometimes wonder why I bother with makeup since I cannot hide them.
I know that beauty is not only on the outside. It is my motto!! I do have areas I try to focus on. I love my green/blue eye color. On a “good hair day”, I love my long hair. I don’t like getting my photo taken, but there are a few that I actually do consider myself pretty in. Those are what I need to look at to remind myself of my inner beauty. I know it is there. I just need to find the confidence to find it everyday.