I have had alopecia areata since 1997 and have been leading Bald Girls Do Lunch and alopecia support meetings both in and outside the US for quite some time now. Women at the meetings think that I have always been this positive and confident bald woman. What they don’t realize is that, like every woman who goes through hair loss through alopecia, I too have dealt with the self-doubt and worries. It was a journey to get where I am today!
No One Told Me What Questions to Ask
Like many of us, I muddled through before I knew what was really happening.
Getting an accurate diagnosis was difficult because the appearance on my head was diffuse. One dermatologist said I could have androgenetic thinning (early female pattern hairloss) or alopecia areata. I had had one hidden bald spot a decade prior and had totally forgotten about it. I had had male pattern thinning after delivering a preemie baby. Getting my diagnosis wasn't clear cut at all.
After moving for the 4th time in 9 years, the last house had a 3-way mirror. I got quite an eyeful and a new perspective. My jaw dropped. No longer could I lament the loss of my favorite Los Angeles and NYC celebrity hair stylists as the best ever. It was clear that my hair was the problem, not the salons in my new towns. As the new mom at my kids' school, curious eyes started drifting to the top of my head. It was time to have a plan.
Eventually, I cut off what remained of my hair. No one told me to cut off the last remnants. It sure felt unnatural to remove something that's a part of myself, but I realized it made no sense to keep it. There was no hair-do. One day I gathered up the last strands and chopped them off. A few tears later I was already feeling like a new woman. I felt in charge! I was one step closer to restoration and acceptance.
I didn't look at photos of myself, including photos from childhood (like the one in this post), for about 10 years. But I didn't beat myself up about it. I felt it was a normal reaction to knowing I was in limbo with my looks and my confidence. I cut myself some slack, but I was aware of it. I didn't want my photo taken either. That was then. Total acceptance changes things.
Meeting Other Women With Alopecia
Early on in my hair loss (soon after I got my first wig), I attended one alopecia meeting with families and crying parents and squirmy toddlers and men and women with AA. I came away feeling worse! I had high expectations and not a small amount of nervousness. I expected to feel better or learn something useful to help lift myself up. None of that happened. I realized that this type of format is not what helps women.
In fact, I had not known how alone I had felt dealing with my changed looks until I started to meet other women with alopecia areata. Then it clicked. The burden of carrying all the feelings about my changes was lifted as soon as I started talking to someone else. I was evolving into a new and improved version of myself!
I knew other women must be struggling with the same burden I had. And when I created meetings for other women with alopecia some of my professional experience came in handy. As a physical therapist I've been trained to be a keen observer and remember what I see. I know that what people are feeling is often not evident in how they appear. I know the emotional roller coaster adjusting to a physical loss.That's the love I have for meeting women with alopecia and bringing them together. I never know what the mix of the moment will result in. But I have a passion and the skills to work hard ensuring that everyone comes away with a new thought, a new inspiration and a feeling of connection.