Alopecia Areata: Living with Hair Loss Does not Mean Living in Shame
Printed in the Times-Colonist, Victoria, British Columbia, Canada
September 23, 2003
By Fay Melling
One year ago, I took the plunge and decided to begin living my life more authentically - without a wig or other head covering. I've struggled with alopecia areata, an autoimmune disorder that attacks the hair, since the age of 16, and for the last four years I've had no hair on my scalp.
Going "wigless" was a very hard decision to make. I was inspired years ago by Sheila Jacobs, a woman in Vancouver who wrote a book about alopecia and lived her life without covering it up. I decided that it was time that someone stood up to say, "It's okay for a woman to be bald without shame." With the number of people who have alopecia, trichotillomania, thinning hair or are undergoing cancer treatment, you'd think that the occasional sight of a bald woman would be commonplace.
I had much of the summer off last year and through my husband's encouragement, occasionally went wigless while travelling around BC, where no one knew me and no one cared. But once I set the goal to go wigless at work for the month of September, Alopecia Areata Awareness Month, I experienced a challenging mind game, pitting my self-encouragement against my fears of societal ridicule. It's interesting that I was most insecure about what people would say who knew me in the neighbourhood and at work. In some way, I felt that I had to come clean on a lie.
My first day at work was the hardest. I took a crowded bus to work downtown, trying not to overplay any looks I got. Amazingly, I didn't run into anyone I knew on the 3- block walk to my building and all the way to my desk on the 5th floor. I immediately sent off an e-mail note I had prepared explaining what I was doing to the entire building and other affiliated offices. That alone relieved a lot of pressure. I didn't want people to worry unnecessarily that I might be sick, and I didn't have the energy to explain alopecia to everyone individually. I got through that first day with lots of deep breaths and my heart in my throat. At the end of the day I was exhausted but proud to have taken the leap.
To my delight, the response from co-workers was incredibly supportive and encouraging. Although it continued to be hard to face the public with my "new look", I found that it quickly became less and less prominent in my thoughts. Then once the month of September was over, my work colleagues all encouraged me to keep it up - that it would seem strange to them if I returned to wearing wigs every day.
Now when I choose to wear a wig for fun on occasion, it tends to surprise my friends, workmates, and bus-buddies.
I have been blessed this past year with support all around me, from my immediate and extended family, other friends with alopecia, neighbours and from strangers too! I am pleased to report that my worst fears about ridicule never realized.
My husband and I have two young children, which means we are often among crowds of children, whether at Cordova Bay Elementary, Saanich recreation centres, camping, or just shopping. Kids are so great. Unlike adults, they will look at me and ask outright why I have no hair, and some just stop dead in their tracks and stare. I like talking to kids openly about it. If I see a child staring, I'll say, "Looks pretty different, doesn't it?" They usually nod, and I tell them, "I just don't have any hair. I'm not sick, it doesn't hurt, and you can't catch it. But I'm just the same on the inside as someone with hair. Would you like to have a closer look?" And now that I've been seen this way for a year at my daughter's school, I'm just another one of the moms.
It is my hope that by exposing my scalp, more people will get to know what this disease is and not automatically equate baldness with cancer, "skin heads", or religious preference.
Although this disease is not physically painful, with society's constant barrage of images of what is acceptable and beautiful, alopecia areata can be emotionally and psychologically devastating. It's a very strange feeling looking into the mirror and not really recognizing who you see reflected back at you. It's even harder watching television or reading magazines and being bombarded by sexually charged hair ads for conditioners, dyes and shampoos - especially, the "yyyess! YES!!!" herbal ones. They send a very clear message, "You need great hair to be beautiful, happy and sexy." I don't buy it!
The worst part is that many sufferers feel alone, ashamed and compelled to hide it, which can become an awful burden to bear. The desperation to try to stop hair falling causes people to try dramatic lifestyle changes and sometimes remarkably painful and/or risky dermatological treatments which I personally no longer buy into for myself.
Living without hair may not be easy, but it does not mean having to live in shame. Support groups are an amazing way to help with coping skills and in providing education, tips and resources. A support group in Victoria meets every couple of months, and you can e-mail firstname.lastname@example.org for more information. To learn more about alopecia areata, two excellent web sites are www.alopeciaareata.com and www.keratin.com.