Rather than running away from her alopecia, Lindsay Walters is running with it—literally and figuratively.

By Renee Cherry
March 06, 2020

When Charlotte-based runner Lindsay Walter received an interview request recently to discuss her alopecia universalis, she says she happily accepted, she recalls in a recent Instagram post. Walters goes on to say she enjoys any opportunity to bring more awareness to and shed a positive light on her condition. This type of alopecia causes someone to lose the hair all over their body (not to be confused with traction alopecia, or hair loss stemming from excessive pulling on hair).

As the interview progressed, though, Walter says she got the feeling that the story her interviewer was trying to paint might not be so positive. Walter explains that when the journalist referred to her as an "alopecia sufferer," she immediately told her that she didn't like to use that label.

"I politely told her I did not suffer from Alopecia but it was something that I have, it's apart of me but not who I am," writes Walter. "It does not define me. If anything it's made me a better, stronger, more loving and compassionate person." (Related: This Bride Embraced Her Alopecia on Her Wedding Day)

Still, Walter says the interviewer continued to use the phrase, and eventually, she decided to back out of the conversation. "I didn't want this to turn into some kind of sad story for me because I don't feel sad for myself," Walter tells Shape. "After the third time [the word was used], my gut feeling was like 'no, I don't like this, this feels wrong.'"

Walter hasn't always had such a strong conviction about not being called a "sufferer." Walter started losing her hair at age two and was bullied growing up.

"I wore wigs, and you could tell that it wasn't really normal hair," she says. "I wouldn't tell the teacher or respond with a comeback because I was just so embarrassed and ashamed of my alopecia. So it had always kind of been this kind of negative thing, and it was really hard to talk to my family about it. I just had a lot of feelings and emotions and it was really, really hard for many years." (Related: This Woman Shaved Her Head After Years of Holding Herself Back from the Style She Wanted)

Fast forward to today, Walter says she's no longer in that headspace—thanks in part to running. During her senior year of college, the now 29-year-old ran her first marathon. "The more I was running, the more confidence I had that eventually carried over into my everyday life," she says.

Training and ultimately accomplishing a distance race made her feel powerful. And joining the running community gave her a new sense of belonging. Fueled by her newfound confidence, Walter eventually decided to stop wearing wigs.

"That was the biggest turning point in my life," she says. "I really started looking at all the positives and was really stepping toward loving myself and embracing my alopecia."

Now, Walter is on a mission to become the resource, confidant, and friend that she didn't have while growing up. Thanks to social media, she's been able to connect with and act as a mentor for children who have alopecia, she says. And she started Lindsay's Little Pals, a pen pal program where she writes to children with the condition across the country, providing advice, trying to encourage self-love, and simply getting to know them outside the context of alopecia, she says.

Aside from her advocacy work, Walter also has her sights set on more finish lines. Not only has she completed 40 marathons to date, but she's also currently training for the Boston marathon and plans on tackling a 100-miler ultramarathon next.

So, yes, it's easy to see why she wouldn't identify with the word 'sufferer'. "When I was a kid I felt like I was always hiding this big secret," she says. "My dream was to live my life without a wig and be happy and to be doing all of these things." It's safe to say, she's doing all that and more

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