Interview – Shannon
[The BGDL meeting] was a safe and inviting place where I didn’t have to say a lot because there was a mutual understanding between the other women and myself.
Interview by Nikki Baldauf, Production Editor at Bloomsbury Publishing
Shannon, 24, is an assistant branch manager at Hertz Rental Cars in Denver, Colorado. She’s married, loves to knit, plays the French horn, and runs half-marathons. She was diagnosed with alopecia when she was 18.
I went to my first BGDL meeting in Denver a couple of years ago.
My mom saw something on the TODAY Show, so she sent me the YouTube video and I thought it was really cool. Then there was another meeting here just recently in June.
It was nice to just sit and talk with people who had gone through the same thing that I was going through.
I was a little nervous before the meeting. I wasn’t sure what to expect, but I was also really excited because I was finally going to meet people that had the same thing I did. I’d never heard of this disorder before, so it was nice to just sit and talk to people who had gone through the same thing that I was going through. It was a safe and inviting place where I didn’t have to say a lot because there was a mutual understanding between the other women and myself. So I wasn’t really nervous at the second meeting — it was like seeing old friends.
When I was first diagnosed, I had never heard of alopecia.
It was my first semester of college, six or seven years ago. I was noticing that my hairline was receding a little, and I was getting more hair all over my clothes, but I just changed my part so that you couldn’t tell. I also noticed that I had a couple of patches that were completely bald so I went to the doctor. I thought I was dying — I didn’t know what was going on! When they said “You have alopecia,” I was like “OK, never heard of THAT before.” I only had little patches at the beginning, and then it grew back, and then about a year after that I totally lost everything and I’ve been bald ever since.
I was trying to hide it in the beginning because I was embarrassed about what was happening.
It’s hard because you don’t feel attractive anymore, you feel like people are just staring at you all the time. You look into the mirror and you look like a cancer patient. At least that’s the conclusion that everyone jumps to when they see a bald person. I went to Disneyland in March, and I didn’t want to wear my wig because it was so hot, so I walked around with a bandana for the whole week. And I actually had people come up to me and comment! One said “Oh, are you fighting the good fight?” and I said “No, actually I just have alopecia.” Another asked “How long have you been in remission?” and I said “Never!” So that was a little rough, but at the same time you just kind of have to brush it off.
I’m meeting new people all the time at work, and it’s always weird when someone mentions my hair. They’ll say “Oh, you have such beautiful hair” and I just say “Thank you.” Sometimes I want to say “Well, you can have it if you want!” But I don’t want to freak people out, so I keep my comments to myself.
I have my good days and bad days, but it helps to have my husband because he’s super supportive. He met me when I was wearing a wig and he was like “Oh, that’s so cool! That’s the coolest thing I ever heard of!” He said he doesn’t look at me as a bald chick though, he just sees me as me.
I’m thankful for what I’ve been given. I’m not dying, I just don’t have hair.
For someone who was just diagnosed, I would just say be as positive as possible, and don’t be too hard on yourself. It’s important to keep people around you who support you and love you and don’t see you as a bald person.
There are definitely some pros to having alopecia! Sometimes I don’t have to shave my legs for a while, which is awesome. It’s also kind of nice that on a hot day I can just take my hair off and be totally cool. I think it’s made me a stronger person, because I’ve had to accept it and learn to live with it. I’m thankful for what I’ve been given: I’m not dying, I’m not sick, I just don’t have hair — and that’s OK.