In her own words below, Adrienne shares her story of being a woman with alopecia.
I can remember being 8 or 9 years old when my mom first discovered the alopecia, just a few spots on my scalp. The dermatologist gave us different creams to try out, with very little results. We even started trying injections, which you can imagine is pretty traumatizing for someone that young. The hair did actually grow back, sort of – it would fall out in spots, then grow back slowly.
When I started my first job, 3 1/2 years ago, the hair loss became significantly worse. After trying squaric acid treatments with no result, I eventually realized I didn't have another option, so in October 2011 I got my first wig. It was long and pretty – and it let people look past my appearance and actually talk to me. When I sit down with my students as an advisor, we sit basically knee to knee. The wig made me much more comfortable being so close. Plus it’s freeing to come home from work and be able to take my hair off and relax.
In the last year I’ve lost all of my eyelashes, all of my eyebrows, and rest of the hair on my head and on my body. I went from alopecia areata to totalis to universalis. I’ve learned how to do my makeup so that I can kind of blend in, and that’s given me more confidence because it makes me feel less like people are looking at my head and more like they are listening to what I have to say. Plus, I see the benefits in only having to wake up 15 minutes before work – I put on my makeup, throw on my hair, and I’m out the door!
Because there aren’t a lot of people who have alopecia, it’s very rare to meet someone who also has it. I STILL have never met another woman who has alopecia. Because I live in a smaller town, I’ve never been able to go to one of the Bald Girls lunches, but I do find a lot of support from the website.
When I found Bald Girls Do Lunch and other online support groups, I saw that other people were scared to date or didn’t know how to do their makeup, and that I wasn’t the only one going through these struggles. That really made a difference. The online world has helped me significantly. Watching the YouTube videos to figure out how to make realistic-looking eyebrows made me realize “It’s ok to move on from this and be able to do what I want to do!”
It's very difficult to have anything that makes you look different in junior high and high school, so I got questions when people would notice a spot. But I had friends who would stand up for me or defend me. This past year, two high school friends came to me and said, "We’ve been growing out our hair and we want to donate it to you. We want to have a wig made for you!” I was so touched by this gift of theirs and how much they'd thought about it, and how they'd spent months-and-months literally just growing this hair. They took specific vitamins and used special shampoos, it was just so moving. It was such a selfless, generous gift. The wig is being made now; I'm very excited! It almost doesn't feel like it really happened to me. That's a part of them that will be with me every day, and that's something money can't buy.
I'm sitting in my kitchen right now in my pajamas and my scalp is just out. That's how I am when I’m alone; I don't naturally wear make up. I'll wear hats if my head is cold, but when I'm alone I don't really think about it. Anytime there's anyone else present, it's on my mind, whether I'm wearing a wig or not wearing a wig. Typically, I always wear my wig, even with my close friends. It makes me feel put together.
I kind of stopped dating when I started losing my hair significantly, just because it affected so much of how I see myself. Once I had more control by having a wig and by knowing how to do my makeup, I started thinking, “Yeah, I can go back to dating.”
I have a boyfriend now, so I had to go through the whole conversation with him. After 3 or 4 dates, I decided this is when you’re supposed to share things like your history and secrets. I was freaking out! Finally we were sitting down at the end of the evening and just talking. I basically said, “This is what I have” and he paused and looked at me, and said, “Wow, that must have taken a lot of courage for you to tell me that. Thank you.” And that meant so much. It meant that he took it seriously, and that he understood this was very frightening for me. And because he was so sincere I felt safe. He said the right thing!
When he comes over now, I very rarely have my wig on. And I can see, when he looks at me, that he doesn’t look at me differently whether I’m wearing my hat or my wig, and that gives me more and more confidence each day to think, “It doesn’t really matter, does it?”