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Talking to Bald Women with Alopecia Areata: Carol's Story

Posted by Thea Chassin

March 26, 2014 at 9:03 AM

carol-jones-at-mic-scCarol Jones, from Hamilton, Ontario, has a lot on her plate. Currently working as an assistant supervisor for school-age children and the lead singer for her church band, she’s also a mom with 3 kids, recently registered to go back to school to become a priest, and will be getting re-married this year. She has been dealing with alopecia for as long as she can remember.

Read her story of being a woman with alopecia in her own words.

I’ve had alopecia my whole life!

I wasn’t even a year old yet when my mom found out I had alopecia. As a kid, all I remember is a lot of ointments that they kept rubbing into my head. I’ve just always had it.

I had alopecia areata until I was about 13, then it changed to totalis, and when I was about 16 it changed to universalis. My mom had a hard time with my alopecia, and my dad pretended it didn’t exist. I was having a hard time at school too, so I felt very much alone when I was a kid. Compared to what kids today have available – they’ve got loads and loads of support now, but we’re talking about back in the 80s [laughs]. It wasn’t until I was in my early 20s, when online support started to roll in, that I realized I wasn’t as alone as I thought I was; that’s when I started to learn to love myself.

carol-jones-with-fiance-sI was a mom at home with the kids, and I thought randomly one day, “Hmm, I wonder what will happen if I look up alopecia?” Originally I think there was a Yahoo! group and an MSN group. It was very, very basic, but there were chat rooms. I saw pictures of other bald people walking around without wigs, and thought “Well, they look kind of happy!”

It’s been almost 15 years since I stopped wearing wigs, and that’s been a journey of its own. It wasn’t until then that I realized it doesn’t matter if I have hair, it matters who I am. My fiancée Jeremy and I met online so he knew before we even met what I was all about. Alopecia has never been an issue in our relationship.

He was thinking “Oh my gosh, there’s someone else out there like me!"

I went on a mission trip to Guatemala, and I had this deep feeling that I was going there for more than just the construction project. I was talking to a doctor there about alopecia and he said “I’ll keep my eyes open, there might be someone here who has it.”

Near the end of my trip, I got a call: “You need to get down to the clinic NOW!” Turns out, from two hours away, this mother came with her son who had alopecia, and the doctor wanted me to talk to them. The mother was under the impression that her son was dying, and she was in quite a state. The doctor had to translate everything but I was able to explain to her in great detail what was going on, and I think the little boy felt a bit better afterward. There was a lot of smiling going on. I think it would be fair to say that it was miraculous that we got to meet.

I’m always going out there, I’m always meeting people. I’m continuously talking about alopecia.

I was at a coffee shop the other day and someone says to me, “Why do you shave your head?” I was like “Well…” and I got into the whole conversation about it. You have to teach people about it, otherwise they don’t know. People make assumptions all the time, but when they find out more about it, it’s easier for them to talk about it with someone else.

I met Thea at a dinner with other alopecian women in Philadelphia during the Children’s Alopecia Project conference. It was magical. Going out with a group of amazing ladies presenting their “true form” to the public is huge! People seemed intrigued and the way we were looked at as a group was somehow different than when I have gone out alone. It felt incredible to go out with women just like me. Unless you talk to someone else who has alopecia, no one really quite gets it, and as much as I enjoy being different, it’s also nice to feel like part of a group. I’ve worn a tee-shirt with the Bald Girls Do Lunch logo out in public which has raised a few questions.

It’s important for women to have BGDL as a resource. I had lunch with a group of women in Toronto, and I would love to promote BGDL while creating a larger awareness for alopecia. I think in Canada, especially, we don’t have a whole lot of people speaking out.

Carol was interviewed by Nikki Baldauf, Production Editor at Bloomsbury Publishing

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Topics: women living with alopecia, stories of women with alopecia