By Sue LeBreton
The recent fuss about Michelle Obama’s new bangs illustrates our fascination with hair. From fictional characters such as Anne of Green Gables and her famous red braids to Jennifer Anniston’s “Rachel cut”, the style and color of someone’s hair is a large part of their image.
Think back to a time when a bad hair day darkened your mood and picked away at your self confidence. Imagine that every day was the ultimate bad hair day. Imagine you needed a wig, or a scarf to camouflage your thinning or absent hair. Imagine you had no eyelashes or eyebrows. Imagine you did not know if your hair would grow back and even if it did, it might not stay.
This is life for women living with alopecia areata, an autoimmune disorder that can potentially affect two percent of the population. It is a condition where the body, for unknown reasons, attacks its ability to grow hair, resulting in hair loss on the scalp, brow, body or some combination of the three. Most people affected are otherwise healthy. Alopecia areata can strike at any age and has an unpredictable course. For some women their hair grows back. For others it grows back and falls out again. Sometimes this cycle of hair loss and regrowth repeats. For some the hair loss is permanent.
If you have a loved one suffering with alopecia you may wonder how you can offer support. Thea Chassin, a woman with alopecia areata, founder of Bald Girls Do Lunch and initiator of International Women with Alopecia month, offers a few suggestions:
1. Be a genuine friend who is ready to listen when she is ready to talk.
2. Do not dismiss the importance of this loss by telling her “it’s only hair”.
3. Help her remember all the positive qualities that you and others love about her.
4. Turn the tables and ask how she would react if you were the one dealing with alopecia.
5. Encourage her to volunteer by suggesting you do something for others together. The volunteering will lift her spirits.
Women with alopecia often do not pursue desired activities due to fear that people will know they have hair loss. “Twenty five years in and I have not done a triathlon because I do not know how to transition from the swim portion to the bike without people seeing me without my wig. It’s obviously a self esteem issue,” says the very athletic A.H. who is still uncomfortable identifying herself as a woman with alopecia.
Some women feel comfortable appearing bald in public, others do not. When cyclist Joanna Rowsell climbed the podium at the 2012 Olympics to claim her gold medal in cycling, she chose not to put on her wig. With that step she became an inspiration to alopecia sufferers around the world. Such public gestures are not for everyone. Colleen Butler, a lawyer with alopecia and President of the Canadian Association of Alopecia Areata (CANAAF) Foundation describes her organization’s mission “to support people so that they can learn to live with alopecia and learn how to be strong and confident whether they choose to wear a wig or go bald.”
Chassin speaks about the common experience of a woman with alopecia being mistaken for a woman with cancer. She recounts a story where a well-intentioned man approached her while she was choosing cantaloupe. Seeing that she was wearing a wig, he leaned over and asked how she was doing with her treatment. “I’m not sick. I have alopecia. I cannot grow hair anymore,” was her confident reply. Her mission is to encourage women to find their voice so that they too can nonchalantly respond to such encounters. She admits that this takes practice and does not come naturally. Butler reinforces this message. “The public needs to know that we are not sick and it is not contagious.”
If you are a woman dealing with alopecia, coming to terms with the loss of your hair is a grieving process and each person progresses through the stages at their own pace. “Women put pressure on themselves by thinking they should have accepted it by ‘now’. There is no deadline,” assures Chassin.
Be understanding and open with the person you know or meet who has alopecia. Do not be afraid to ask questions. Butler says, “ I like it when people ask questions about it because I am helping to educate them about alopecia.”
Sue LeBreton is a freelance writer with an interest in autoimmune disorders.
Signs of Alopecia
As you know from cleaning your hairbrush and shower we all shed hair, but if you notice an increased amount of shedding, or a bald patch you should immediately see your doctor. Your doctor may do some initial blood work to determine if your hair loss is associated with an underlying medical condition such as: an iron deficiency, anemia, pregnancy or a malfunctioning thyroid. Your family doctor may refer you to a dermatologist with experience in hair loss who can investigate in more depth and suggest possible treatments. Push aside any embarrassment about seeing a doctor because starting treatment as soon as possible will improve your chances of success.
• National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS): www.niams.nih.gov
• Bald Girls Do Lunch: www.baldgirlsdolunch.org
• National Alopecia Areata Foundation (NAAF): www.naaf.org
• Canadian Alopecia Areata Foudation: www.canaaf.org
• American Academy of Dermatology (AAD): www.aad.org
• American Hair Loss Council: www.ahlc.org