Letting Your Flaws Empower You (Sam’s Story)

The speech I gave on Alopecia Areata today…

“One year ago, I wouldn’t have had the courage to get up here and speak in front of all of you. In fact, I probably would have gone as far as skipping the class entirely. Public speaking has never been a strong suit of mine. Actually, it’s always been something I’ve been a bit afraid of.

Up until this year, I let fear control my life. I avoided trying new things, I didn’t let myself get too close to people who could easily walk away, and I wouldn’t go anywhere without someone I knew being right beside me. As you can probably imagine, that’s a bit of a problem, and I realized that.

That’s why, on September 13^th 2012, I got a tattoo on the inner side of my left forearm. It’s the image of a lightening bolt and at the center it reads “bravery.” The peculiar thing about this tattoo is that it’s actually facing me. I did it this way because I wanted to be able to read it for myself. It’s a constant reminder that fear is not something that I should be, well, afraid of. Fear is something that should be seen as something that can empower us if we let it. It’s okay to be afraid of getting up here and speaking in front of a classroom full of people, but it’s not okay to give into that fear and avoid the situation entirely. Having the courage to get up in front of all these people, no matter how nervous I am, that’s what being brave is about.

And that brings me to my second unusual object. It’s something that you’re looking at right now but probably don’t even realize you’re looking at it. It’s also something that I’m terrified of admitting that you’re looking at. It’s a wig.

About 14 years ago, my mom, my aunt, and I made a trip to Boston to see a doctor and I was diagnosed with Alopecia Areata. For those of you who don’t know what that is, it’s an autoimmune disease that causes hair loss and prevents hair from growing in. This happens because your immune system mistakenly attacks the hair follicles, making them fall out.

Alopecia Areata is not a life-threatening disease, but it’s one that can lead to a lot of mental health problems. For a girl who’s had it all her life, it can be really confusing. When I was six I found myself questioning what I was and what was wrong with me, why I wasn’t like the other girls. I didn’t have the right body parts to be a guy, but I didn’t exactly look like a girl. Back then, I didn’t understand that boys got haircuts just like girls did, otherwise I probably wouldn’t have thought about this so much.

The year before I started high school I decided to get a wig. I was going to a new school with new people and I didn’t want to go through what I went through in elementary school. I didn’t want people to judge me before they knew me. Of course, people did that anyway, but at least it wasn’t for my bald spots.

I’m not ashamed of having Alopecia Areata or for looking the way I do, even though I do cover it up with a wig. The thing that I’ve been lacking all this time was bravery. The bravery to speak up and let my voice be heard, to let people know that this disease exists and it effects more people than we’re even aware of. I’ve lived with it all my life, but it’s not something I’m letting myself be afraid of. Just like I’m doing with my fear, I’m letting it empower me.”

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Getting up and speaking the way I did, about something that is so emotionally close to me, it’s a really amazing feeling. Like I said in my speech, I’m letting this disease empower me and when I was up there, I felt it. Yes, I got emotional at one point, but that’s the point. People should know how this disease impacts people because not enough people are open about it. If we want a cure for this, we need to first make people aware of it.

If you have Alopecia Areata, I encourage you to speak up about it. If people have shit to say about it, hold your head high and know that they don’t really understand what it’s like. Some people aren’t going to be considerate enough to try to understand, and that’s okay, but there will be people who are willing to listen – like the people in my class who were entirely attentive the entire time I was speaking – and those are the people who matter. Even a few people knowing what it’s like can help get the word out there. The more awareness we have, the more funding we can get for research so we can fully understand what gene causes this and what we can do to cure it.

But, most importantly, don’t be ashamed of it. You are beautiful, you have people that love you. As long as you know and believe both of those (and it does take a lot of time and self-assessment to fully believe that with your whole heart, so don’t be upset if you’re not quite there yet), nothing else matters. You are who you are and at least one person out there thinks that’s pretty great, so hold your head high and keep a smile on your face. You’re not as alone as you think you are.