My Story by, Ellen, 17 Years Old

My Story by, Ellen, 17 Years Old

June 14th 2004. I bet I know what you’re thinking. “That’s when her hair started falling out” Right? Nope. That’s when I had my ability to walk taken away from me. It was a normal day, and I was training for a big national competition in Australia with my horse. I had been riding for 10 years before that day, and falling off was just another thing. No big deal. I had heard that you had a 2% chance of something going horribly wrong if you fell off a horse, and I’d never come away with anything more then a couple of bruises and some sore muscles until that day. I was now a paraplegic. Being faced with the fact that I would never walk again. Ever. That I would be completely dependant on a wheelchair for the rest of my life and have to learn all over again to do simple tasks like looking after myself. It was hard. Very hard. But not the hardest thing I’ve experienced.

Just before my 16th birthday, my hair began to fall out. Very slowly at first, just a few more stands then normal. But in the next week it became more and more noticeable. There would be hair on my pillow, in my sheets, stuck on my clothes, on the lounge, in the shower, absolutely everywhere. Handfuls of hair would painlessly and effortlessly come out just running my fingers through my hair. I used to sit on the bottom of the shower in shock, as I watched my hair run loose with the stream of water and watch the water rise as the hair covered the drain. I was petrified of brushing my hair. I wanted to keep the small amount of hair that I had left. I felt so ugly, so alone, like such a freak. I was a girl! A YOUNG girl. And here I was holding my hair in my hands crying and hoping to God that this was just a horrible, nasty dream.

But it wasn’t. It was real, and after a while I decided it had to go. I was sick of the torment of showers and having to brush knots out of my hair and end up brushing out hundreds of strands, having it cover the entire house and having no control over it. So I decided to shave my remaining hair off to raise money for the Leukemia Foundation of Australia. And you know what? I felt so much better. I felt in control for the first time in months, and it actually looked a lot better then the patchy hair I had left. A few months later I decided to start wheelchair sports, and immediately fell in love with track and road. I always wore my wig under my helmet and boy was it uncomfortable. Keep in mind that it gets to about 42 degrees celcius here in summer.

I met my boyfriend through my squad, and he has been my modern day knight in shining armor. He helped me see that there was nothing wrong with not having hair, and that it didn’t change me as a person. That it was only an aesthetic. I was still me, I just looked different. It was one of the hardest things when I first met him to tell him that I didn’t have any hair and that I wore a wig. I thought he would see me as a freak for wearing a wig or that I was ugly and diseased and tell everyone. But he didn’t. He actually didn’t care which was quite concerning for me. But he has been so supportive throughout my whole experience with Alopecia Totalis. After a month I even stopped wearing my wig to training.

I remember pulling up to the track and thought my heart was going to jump through my chest. I was so scared. I thought they would pull off my bandanna or question me, but no one really cared. It didn’t matter to them, and I think it’s helped me so much being around others in wheelchairs, because appearance don’t matter as much to us. We all have scars, some with disfigurement, missing limbs, burns etc. We can all see we’re the same person even if we look different; we just have a different shell so to speak.

I know what you’re thinking. How could losing your hair be harder then never being able to walk again? Because so many people see long, flowing locks of hair as a definition of beauty, femininity, and sexiness. So many people express their identity and personality through hair length, style and color. It’s like losing a part of you. But it’s really not. It’s just hair. You’re still you. You’re still beautiful, and so many people admire your strength and courage for your strength in adversity. It really isn’t that bad once you see that there is nothing wrong with the way you look. And what is sexiness anyway? A tall, thin woman with beautiful long hair? I think not. Sexiness to me is a girl or woman who feels 100% comfortable with herself. Someone who knows she’s beautiful. Who smiles all the time because she feels great.

Look on the bright side. You get to sleep in longer because you don’t have to spend FOREVER styling your hair, your showers are quick because you don’t have to shampoo and condition and you save money on hair dye, hair dressers, gels, waxes, hair sprays, brushes etc.

You’re still you, and you’re even more beautiful then you were before.

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Ellen, Thank you so much for sharing your story!!! If you also would like to share your story, send it hairlossexpertt@gmail.com