So You're Bald -- Now What?

By LeslieAnn Butler

leslieann-butler.jpgAsk your friends if they’ve heard of psoriasis. Odds are, they have.

Then ask them if they know what alopecia areata is. You may get a blank stare...
Yet, according to the National Alopecia Areata Foundation, nearly five million people in the United States alone are affected by alopecia areata, an auto-immune disorder -- the same number as those who suffer from psoriasis.

I use this comparison to illustrate the fact that “AA” is a condition seldom talked about. I believe it should be, and in more than just a clinical way. That’s why I wrote, If Your Hair Falls Out, Keep Dancing! Coping with Alopecia Areata in a Hair Obsessed World. Although alopecia affects both sexes, this book is primarily for women with all kinds of hair loss.

The Voice of Experience

I was diagnosed with alopecia areata (the umbrella term for patchy to total hair loss) in 1968, I have stumbled through all the stages of grief (feeling guilty because, after all, there are worse things than alopecia), figuring out how to look normal (and hopefully even pretty), bouncing from one treatment to another, buying and ruining or rejecting dozens of wigs, losing every single hair on my body, figuring out how to tell people…all in all, going from heartbreak to acceptance to joy and confidence.

After I became spokesperson for the National Alopecia Areata Foundation, women started asking my advice on a lot of things like how to do makeup, what kind of wigs were the best, what treatments were out there, as well as just support, knowing they weren't alone. I felt really good that I could help.

So many women and girls with alopecia are so devastated that they stop doing things they love to do. Some of them quit jobs. Some of them quit sports. The girls didn't want to go to school. One woman wouldn't go out of the house at all. The most important thing isn't how you look -- whether you wear a wig or not, although it helps to feel more "normal" if you put something on your head.

The most important thing is this: Don’t let alopecia define you. Don’t stop doing your favorite sports, dancing, looking for the love of your life, working at what you love to do, don’t stop LIVING! We are here to grow and expand and create. This doesn’t have to stop you.

A Gift in Disguise?

When the dust settles, alopecia areata may inspire you to give back to others, to look inside yourself, to redefine who you really are. It may be a gift in disguise. Wonderful things may come to you because of this. Maybe you’ll help other people. Maybe you’ll be the one to find the cure. Who knows? Just keep going, keep living, keep growing.

Also, remember you are not alone! There are many different resources you can seek out that will give you support going through the difficulties you experience. Resources that I didn’t have, or didn’t know about, when I was going through the worst of my hair loss.

Often, women get depressed when they have this condition -- if you do, reach out. Go to the National Alopecia Areata web site and find out all the resources they offer. Join a support group, or start one. Go to Alopecia and network with other people who are like you.

Eventually, I promise you, you will come out the other side and accept yourself with alopecia areata as a whole, vital and beautiful person.