Despite having alopecia my whole life, I've never really had the experience of being a part of an alopecia support group. I wasn't even sure if any existed in my area. Initially, my goal was to find people in need of wigs to donate some spare wigs that I'm fortunate enough to have in my collection. As someone who has come a long way in my self-acceptance regarding alopecia, it even occurred to me that I could potentially help others who are new to alopecia.
In my search, I discovered that the National Alopecia Areata Foundation (NAAF) has different alopecia support groups in different states throughout the country, with one in New York that meets via zoom on a monthly basis (and occasionally in-person), led by Lindsey Sullivan. When I attended my first meeting, I hoped to be able to help others along their alopecia journey, but I was surprised to discover just how impactful it was for me, despite viewing myself as someone who has "conquered" her alopecia.
Despite how far I've come in my own journey, it forced me to come to terms with the fact that I still have quite a bit to work on. I've only attended one session so far, but I've already met some very inspiring individuals, sharing their own stories about things like opening up to coworkers about alopecia, going to work for the first time without a wig, or telling a date about having alopecia.
When I was in high school, I couldn't even say the word "alopecia" without getting shaky. I held it close like some sort of dark secret, trying to make everyone believe my wig was my real hair, deflecting questions on a daily basis. It took me years to get to the place I'm at now where I openly discuss my alopecia, switch up wigs on a daily basis, and feel comfortable sharing photos and videos of myself without a wig. I'm proud of how far I've come, but it's not an excuse to stop there. It's been a goal for a long time to become comfortable going out without a wig. That's something that I want to make an effort to work on, and attending an alopecia support group can help me do exactly that.
Losing your hair at a young age can be a very isolating feeling. But it was incredible to be connected with so many people who have had similar experiences. As I continue to attend these meetings, I hope to provide my own insight to those who are new on their journey with hair loss; and even after just one session, I feel incredibly inspired and motivated to keep moving along my own journey of self-acceptance.
If joining a support group is something you think would be helpful for you, you can use this link to find one in your area. And if you want to attend an even larger alopecia-focused conference, registration is now open for the 37th annual NAAF conference!
I'm still trying to figure out if I can attend, but if you are interested in attending, you can register here.
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