Interview by Nikki Baldauf, Production Editor at Bloomsbury Publishing
At 37, I look and feel better than I ever have — I just happen to wear a wig!
Dina is a university librarian who lives in Denver, Colorado with her husband. As a young girl, she was diagnosed with alopecia. Dina had a difficult experience as a child, but when the alopecia resurfaced years later she embraced it, accepting it as a part of her life.
My mom was pretty much the only person I had growing up.
I was unconventional and odd anyway, but having people call me “Baldy” and pick on me, having to wear a hat to school when no one else can wear hats, having kids steal the hat off my head, and having people scream “Baldy!” from the school buses as they went by didn’t help. There were always people who felt bad for me or were kind of friendly, but more often than not I was an outcast.
My mom was pretty much the only person I had growing up. She was there for me. She kept me company and took me out for lunch; otherwise I just sat home alone all day watching TV and bingeing on food. She treated me like nothing was wrong and she let me be myself. We were more like sisters than mother and daughter. We would go shopping and she would buy me clothes from boutiques, jewelry — stuff to make me feel like I looked OK.
You leave the baggage behind you when you go away.
I did join a Jewish youth group in high school. I had friends there and I had support, and that helped me grow, helped me cope. I actually published an essay about growing up with alopecia in which I talked about my Jewish identity and how I had alopecia as a kid. I also talked about my identity because I thought for a while that I was a lesbian, because I was so different. Gay literature talks about being an outsider, and having a deep dark secret, and being ashamed. And I thought, that’s me — I grew up with that! But it was the alopecia; it wasn’t my sexuality. So I learned from gay culture to be “out of the closet” with my alopecia.
My turning point with the alopecia was graduating from high school, getting away from those people who picked on me from the time I was diagnosed at age 12 until I was 18. When I went away to college, people were nicer. I was still an outcast and people still thought I was weird, but they were kinder to me about it, and were interested in me for my personality and my intelligence. I think getting away from the people I grew up with was monumentally important, because you can leave the baggage behind you when you go away.
Letting everybody know that I had alopecia meant that I had this amazing support system.
From the time I was 18 until I was 34 years old, I “passed.” I met my husband and got married, and I wasn’t thinking about alopecia at all, I thought that was in my past. Then, when I turned 35, it started falling out and by the end of 2010 I was universalis, which I am now. I was like “Oh, it’s going to grow back,” but it never did.
In graduate school I had this friend who convinced me to wear wigs. Once I did, everyone started saying nice things to me about how I looked. So letting everybody know that I had alopecia meant that I had this amazing support system at school.
My husband handled it better than I did!
My husband is amazing. He knew that I had alopecia when I was a kid, and my hair was thin here and there, so he knew that it was something I dealt with. But when I started wearing scarves and bandanas to work, he went online to Etsy and picked out funky patterns and colors and said, “These would look good on you.” When I’m home around him I don’t wear my wigs — he doesn’t care. He’s a strong character, my husband. He just accepts me, that this is part of who I am.
This is the best I have been in my entire life!
When the alopecia came back in full force in 2010, it forced me to reflect on my life. Since then I’ve changed careers, lost 40 pounds, and started wearing cute bob wigs in funky colors. I stopped looking at wigs as a medical thing but as part of who I am. I am at the point now where I dress really well and I look really good — better than when I had hair. This is the best I have been in my entire life!Now when I walk around I have this great sense of style and people compliment me. I was in a Barnes & Noble and this kid came up to me and tried to pick me up, he said, “I think you’re pretty.” That never happens to me!
I realized today why I prefer BGDL over [other support groups I’ve tried]. At those meetings they sit around and talk about how downtrodden they are to live with alopecia. It's a pity party. Oh poor me..... [whereas] BGDL is like, life goes on! You can live with alopecia. Here are ways to have fun with it. So much more uplifting.
In my world, the people who matter know that I wear a wig.
In graduate school, everyone knew that I had alopecia, because I wore bandanas. And that was more supportive. I have three wigs, and if I interchange them and people don’t know, it’s going to be obvious, but if everyone knows then I can wear whatever wig I feel like matching my outfit with. One day I’ll wear my purple wig, one day I’ll wear my burgundy-chunks-and-brown wig. It’s really important to me that certain people know, the people in my life who have impact, because it’s part of who I am. It’s shaped my identity. It’s not just something that’s external and doesn’t affect who you are; it affects you psychologically.
In my world, the people who matter know that I wear a wig, and they tell me when I look good. And that means something. I don’t let my alopecia burden me. I decided that if the worst thing in the world is that people find out that I wear a wig, I’m not doing so bad!
Bald Girls Do Lunch is the only nonprofit created specifically to help women with alopecia areata cope, gain confidence and feel a sense of community.
