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Yes, I have alopecia. Giving up my wig felt like freedom

I used to run marathons in wigs — and a recent comment on my social media reminded me why I did. But then I remembered why I took the wig off in the first place.
/ Source: TODAY

My first memory of alopecia is wearing a wig to preschool.

At 2, I was diagnosed with alopecia universalis, a condition characterized by the complete loss of hair on my scalp and body. It is estimated that less than 200,000 people in the United States have this disease, but I am one of them.

Growing up with alopecia was a struggle. Social media wasn't really a thing then, so there was no way to connect with anyone with alopecia. I didn't know anyone in my school or community. I remember just wanting to fit in with my peers, so wearing a wig felt right.

Wearing her wig, Lindsay Walter poses alongside Tweety Bird as a child.
Wearing her wig, Lindsay Walter poses alongside Tweety Bird as a child.Courtesy Lindsay Walter

'I just wanted to look like all of my peers'

Not having eyebrows and eyelashes, kids would come up to me and make comments and it was really hard. I never knew what to say, because I was so insecure and uncomfortable about it, so I never stood up for myself.

I never told teachers and never really told my parents about how I was treated. It's just something I kept bottled in, because I was so uncomfortable. Wearing the wig was security for me. I just wanted to look like all of my peers, but deep down it never truly felt like the real me. I had this huge secret and I didn't know how to talk about it.

In middle school, I started playing basketball and that became such a healthy outlet for me. I would go to school and deal with all the bullying while trying to be a super good student, and then come home and shoot hoops in my driveway. Basketball gave me a way to escape my alopecia as well as a way to excel and get noticed in a different way that had nothing to do with not having hair. Sports became an outlet for me, and I got into running. I liked being in control of how hard I worked.

I ran my first marathon right before my senior year of college in Duluth, Minnesota. I never thought I would become a runner — or that it would spiral into what running has become to me — but I remember the feeling of that first marathon and the way I felt so embraced and supported by the running community. No one was looking at me for my alopecia and I felt so part of the group. So empowered and encouraged.

At that point, I knew I was going to take up running marathons.

Lindsay Walter ran many marathons wearing her wig, until one day she decided she was done.
Lindsay Walter ran many marathons wearing her wig, until one day she decided she was done.Courtesy Lindsay Walter

Like I had in basketball, I initially wore my wig while running using tape and headbands to hide the cap. The more I ran, the more confidence I gained in myself, but I was still very much struggling with my alopecia.

'There's nothing beautiful about this'

While training for an upcoming race, I was doing my 20-mile-long run on the Greenway in my hometown of Charlotte, North Carolina, and passed by a spot that I run past all the time. It's a spot I frequent when I need a little pick-me-up, and in a moment I'll never forget, I took off my wig.

I just remember holding it and it was so sweaty and it was the first time I really looked at it. For the longest time I loved my wig and I thought it was so beautiful, but holding it in my hands felt different. It smelled disgusting and I just looked at it and thought, "There's nothing beautiful about this," and that had never been my mindset, ever. 

Lindsay Walter started "Lindsay's Little Pals," a pen pal program for kids and teens with alopecia.
Lindsay Walter started "Lindsay's Little Pals," a pen pal program for kids and teens with alopecia.Courtesy Lindsay Walter

My eyes welled with tears, because it was a moment that I had wished for my entire life — to finally be at a point where I was like, "I don't need this wig" — and it was so powerful. I held it in my hand and I ran the last couple miles home with it and I hung it up. I remember looking in the mirror and really looking at my facial features.

I had always done a side bang to kind of cover my eyebrows, because I was so self conscious about that — anything I could do to hide my face as much as I could. Just looking at the color of my eyes and my skin and really seeing myself after all this time ... I just felt so beautiful. I've never felt like that like my whole life. 

'You look like a sick, ugly man'

On April 23, 2023, I ran my 52nd marathon, the 2023 London Marathon.

When Lindsay Walter saw this professional race photo of herself, she knew she wanted to buy it.
When Lindsay Walter saw this professional race photo of herself, she knew she wanted to buy it.Courtesy Lindsay Walter

I was on a runner's high just getting back from London, knowing I'd had a good race and feeling super proud about it, and saw the official race photos. I never buy race photos, so for me to like and then buy the race photo was a big deal, so I shared it on Twitter, because I was feeling so good about it.

But almost immediately I got a comment telling me I looked like a sick, ugly man.

One thing that has always been such a trigger for me, especially when I was younger, is people calling me a boy because I didn't have hair. Referencing me as male is one thing that hurts the most.

I've dealt with tons of bullying comments like that, but it blindsided me so much after being on this incredible high, and then to have someone immediately say that. In that moment, I became so self-conscious and I went back to all of the hard times I've experienced because of my alopecia. I deleted the post, thinking, "Oh gosh, I probably do look like a man. Other people are going to think that."

I ended up going on a short little run and thinking about alopecia in general, how much I've overcome, all the races I've done, the fact that I've won a few ultramarathons and how much I have to be proud of. That's when I hit a mental switch. I was like, "No, I'm reposting the photo. I'm proud of that. I love that photo!"

I never thought it would go viral.

All of a sudden my phone was pinging nonstop and I had to turn off all my notifications. It just went so crazy and it was the best feeling to see that 99.9% of all the comments were so nice and uplifting.

Lindsay Walter
Lindsay Walter poses with her medal after completing the London Marathon .Courtesy Lindsay Walter

While I never anticipated a viral moment, it's a good reminder that words — good or bad — matter. They matter and they can make a difference. If you comment or say something to someone, I would just think before you speak and never make assumptions. A lot of times with alopecia or with a bald head, people assume it's cancer and that you're going through treatment, but alopecia is so much more than just hair, and it’s not just losing hair. There’s an emotional toll that comes with that.

You don’t really realize how attached you are to your hair, which is not a bad thing. But for me, I hate when people say, "Oh, it’s just hair. Don’t worry about it." And, yes, I know I’m not sick, but also there’s so much that goes with it — not having eyebrows, eyelashes, all of it — it’s such an emotional roller coaster. So I encourage empathy. I feel like empathy is so magical and so important, and the best thing you can have for someone.

This interview has been edited and condensed.