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Alopecia Areata: The shame and embarrassment of this disease devastates the lives of too many women and girls when treatments do not work. Since 2007 Bald Girls Do Lunch has connected with over 3,000 to restore self-confidence and conquer isolation. With requests for meet-ups in every state and beyond the USA, Bald Girls is answering the plea for women to find others for community and support. From intimate groups to style workshops to restoring her looks, BGDL puts women on the track to normalcy and living well with this disease. Learn more...

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My Head Is My Best Feature (Part I)

Joanna Zelman, an editor with HuffingtonPost.com, interviewed Alyia Bettman for Bald Girls Do Lunch. Alyia lives in New York City and has had Alopecia universalis since childhood. She works at the Foundation for Jewish Camp.

Alyia with hair Alyia in 2011

When did it all begin?

During the first three weeks of 6th grade, all of my hair fell out. Since then I’ve been bald. Now I’m 23.

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How did you respond to your hair falling out?

I tried every treatment that was out there. Different creams, different topical solutions, cortisone shots – it was pretty devastating. I wore a hat to school every day. It was a low point. I blocked out everything I felt at that point; it just seemed so terrible.

In 6th grade, how did the other kids react?

There were some kids who stared and definitely wondered why I was wearing a hat every day. And a few teachers who didn’t know what was going on would yell in the middle of the hallway, “You can’t wear a hat!” And I was just like, “Yes I can, I have permission!”

Did other kids tease you?

No one ever bothered me about it that much. It was more myself. I was just so nervous every day, so fearful someone WOULD say something. I kept an incredibly low profile and pretended everything was as normal as possible. I don’t know if that was the right thing to do or not, but it worked out for me. It made sense.

How did your parents support you?

Every parent is supportive when their kid is in need, no question. But my parents were supportive in the sense of, “just go bald, be yourself.” It wasn’t that they didn’t support a wig or a hat, but they didn’t encourage it. They never put it as a big option. It was more, “This is you now. What can we do to help you accept it?” To this day that’s their motto.

“It used to frustrate me that Alyia could not accept compliments regarding her appearance and often would brush them off, as if she couldn’t believe what I was saying. This, understandably, was an ongoing struggle between us. I wanted her to own her universalis, to accept and appreciate her body and her beauty as a universalis woman.”

Max Cutler, Alyia’s boyfriend
(Read Max’s full article, in his own words.)

Do you have advice for other parents on the best way to treat a child with alopecia?

A lot of times I’ll find it’s the parents who are more freaked out and scared about their daughter or son going to elementary school for the first days without a wig or a hat. “What if they get made fun of, or what if they get teased?” The thing is, it’s that fear that’s being put into the child. It’s that kind of anxiety, that kind of worrying, that allows these problems to happen.

Are the fears rational?

I totally understand the fear. No one wants their kid to be teased. But the reality of it is: if your child is bald, your child is bald. A wig, and a hat, and a scarf… these things feel comfortable at the time. But, unless it’s the child saying, “this is what I want to do,” and if it’s the parents instead putting them on the kids to save them…well, they’re not really saving them. They’re starting a whole lifetime of covering up and hiding.

How do you want to see parents treat their bald children?

I hope parents can see the beauty in their kid being bald and support them in making their own decisions. Being teased, that’ll end. It might not even start. You won’t know what this beauty is unless you try it rather than hide it.

Did things get better for you after that first year?

In June of that year I went to a kids camp where I saw more bald kids and teenagers. Within a half hour – (I still had this little piece of hair on top of my head) — I asked my dad to shave it off in our hotel room. And from that moment on I never put a hat, a wig, or a scarf on again. I was bald from that moment on.

Beyond that year, going into college, and now, have people treated you differently?

I think probably once a day, someone asks me why I’m bald, if it’s alopecia or if it’s cancer. But I appreciate it because – I’m being so honest here – I stare at everyone! I’m a starer. And so many bald people will come up to me at an event and be like, “ugh, I hate when people stare.” And I just look at them and I’m like, “are you serious? I stare at everyone!”

Do your friends notice people’s reactions?

It’s funny, my boyfriend and I will be walking to the movies and he’ll say, “Did you see that little girl? She wouldn’t take her eyes off of you, I wanted to kill her!” I’ll say to him, “Who cares? She saw a bald girl for the first time! If I was her, I’d be staring longer!” I guess more people notice it than I do. Since I’ve been bald, I’ve never had a negative experience with it. It’s the best thing that’s ever happened to me. Maybe it’s just I have rose-colored glasses on and I don’t see the bad, but I don’t think there is any.

Alyia with Friend

“The first thing I noticed about Alyia was her outgoing, friendly, carefree attitude. She is confident, beautiful and the closest friend I have ever had. Having alopecia doesn’t affect her everyday life, and does not impact our friendship in any way. I feel lucky to have someone in my life like Alyia, not because she has alopecia, but because of who she is.”

Rachel Kornreich, Alyia’s best friend

You’ve never wanted to change how you look?

There’s not even the slightest part of me that wants to change the way my head is, or my look is, or the way I am because it’s me. It’s the core of me. I am a bald woman. That’s it. I’m sure people with hair don’t think, “ugh, a little part of me wants to be bald today.” Maybe jokingly, but it’s just the way I am. I can’t imagine having hair. I think it would just ruin my life. I can’t imagine it any other way.

How else has your relationship with alopecia affected you?

I was an art major. I ended up doing my senior thesis on my head. I cast my head about 40 some odd times in slip clay, and then put them on these three foot posts and made a walk-through garden of heads.

Alyia’s Art

Did you want to display a message with your project?

I consider it a self-portrait. It was the main feature at an art show on the Ithaca College campus. The point I was trying to make was, “this is me, take it or leave it” and the way my heads were displayed was the same way that I display my head. It’s out there and it’s held high.

What were people’s reactions?

It gave a chance for people to really look. You could walk through the heads and you could touch them. A lot of people really stared, really looked and didn’t feel guilty about it. That’s what it’s there for, it’s art. It was a way for me to let everyone off the hook a little. It was like, here, you look at me, you touch my head, you go for it, and don’t feel bad about it. That’s life and everyone’s curious. I’m curious even.

Now my whole house is covered in heads. I’ve got heads everywhere. Everywhere. Just bald heads all over the counters, all over the furniture, anywhere they fit.

Do you think there are specific challenges that apply just to women with alopecia?

Yeah I do. I think for any human being it’s just a task to get through life every day. And I really believe it. I think that everyone has something going on. And sometimes it’s something physical or sometimes it’s emotional. It doesn’t matter, everyone has something going on. It’s hard enough to just get through the day. I think for bald women, it’s just an added thing.

How is it different from other challenges?

For bald women, it’s something so obvious. It’s so out there. Unless you’re wearing a wig or a hat, bald is something you can’t hide. Just the same as with all of the pressures that are on women – to look a certain way, to behave a certain way, to use certain products and to come off a certain way. It can be terrifying to go against that.

What fears are associated with being a woman with alopecia?

Women ask me, “Do you think my daughter will find love? Do you think a man will love her without any hair? Do you think she ever has a chance of being popular?” Fortunately, this is not the Stone Age. Fashion and beauty are so progressive and so forward thinking that bald women like any person can be cool, popular, and beautiful.

I found love, and I feel beautiful every day. I hope that other women can.

Part II: A Boyfriend’s Perspective …