alopecia

By Monika Sidhu @funky monk_

There are many great benefits to the World Wide Web and its vastness, but one benefit that always continues to impress me: is the ability to find an online community.

These days, online communities have allowed us to experience and learn so much more about people living in different ways than we do. Whether it be farming communities, fishing communities, or ADHD communities, the list just goes on and on. But one community I have been able to gain some insight into in recent months is those who are diagnosed with Alopecia.

Alopecia Areata, is an autoimmune disease that causes hair loss. Alopecia Areata can be specified as a skin disease and it causes those who are diagnosed to lose their hair, often in patches from all over the body. The disease can affect people from all backgrounds, genders, and age ranges.

For many, hair is a sense of identity and personhood. So many of us spend endless amounts of time in a salon, or styling our hair in the mornings all so that we can capture the hairstyle that perfectly represents who we are.

However, when Alopecia enters the arena, there is a question of, how does this affect who I think I am? Does this affect who I am? But the Alopecia community online does not simply wallow in their hair loss. In fact, many people in the community are being positive role models for one another whether that be via wig install videos, Get Ready with Me videos, or just general awareness.

That’s exactly how 24-year-old Cassie Johnson has been using her platform since she started losing her hair due to Alopecia nearly three years ago.

For Johnston who works as an IT recruiter, a model, and an influencer in Toronto, ON, it was by no means an easy transition but it was something she learned how to navigate pretty early on.

“I had patches [of hair]. But I was holding on to them until the very end. And I thought, What am I doing? I can't wear my hair like this. So, I shaved it,” she tells Efe Magazine.

With the love and support Johnston received from her friends, family, and especially her mother, she was ready to conquer her journey ahead of her.

But for Johnston, it wasn’t only about support from loved ones, but it was also about receiving support from those who understood what her journey entailed, and this included finding communities of people online that we’re dealing with hair loss whether it be from Alopecia Areata or another ailment.

It’s exactly how she became acquainted with styling wigs. She looked to the online community for help when she realized her wig placement looked a little off after shaving her head and embracing wigs.

“It looked so wiggy,” she says while giving out a laugh. “That’s how I describe it when it doesn't look realistic,” says Johnston.

It was one of the few moments that Johnston had felt vulnerable since her diagnosis. She remembers the feeling of thinking that nobody should be going through this. But she did not want to wallow, instead, she wanted to find a way to turn things around and so she turned to TikTok and wherever she could find creators to help her figure out how to get used to the wig and how to style it so it didn’t look so wiggy, as Johnston would say.

To make the wig look more realistic, she found tips from influencers on how to properly style her wigs, “You have to blow up the front so that it looks like you have almost like a cowlick,” she says.

After learning how to best wear a wig for herself and finding others online that could help guide her in living with Alopecia, Johnston realized that she too wanted to help others in this online space.

“Now that I figured it out, why not be that influencer on social media that can help other people?” says Johnston. And so, she started sharing her own journey with Alopecia Areata online, to help herself and to help others.

Johnston was 21 years old when she started losing her hair. While there was some adjusting that had to be done, she wasn’t entirely devastated about it:

“I never had an attachment to my hair. Honestly, it was not great hair. It was very thin,” she says.

And so, Johnston took it upon herself to have fun with the process which was also something she’s shown to her followers online.

Johnston has experimented with different coloured wigs like copper, and she’s tried different styles such as mermaid-Shakira looking curls.

Johnston even tells Efe how ultimately shaving her head and moving into wig territory helped her become more confident than she was before:

“If I didn't lose my hair, I wouldn't have as many of the experiences that I've had now. And I think it's also brought this like level of confidence as well behind me that I've just been able to share on social media”

She also has found community beyond the online realm and the support of family and friends.

Johnston discovered a sense of belonging with the team at Continental Hair, the place where she got her first wig, and the company that brought her out on a brand trip with other influencers/ models that have been diagnosed with Alopecia.

“Doing things like that are so incredible, because you're able to meet people that are just like you, that have lost hair all over their body,” says Johnston.

Johnston does more representation modelling as someone with Alopecia and she is currently represented by Inclusive MTM, a Toronto based agency that are self-described as “an advocate for those who have been overlooked by traditional agencies and the fashion industry as a whole.”

While her social media page and telling her story has been one of her favourite ways of helping others with Alopecia, she also works at reaching out and helping in other ways. Johnston has began as a mentor at the Canadian Alopecia Areata Foundation (CAANAF).

Her role will be to help young girls who are also navigating Alopecia Areata.

“I'll help mentor younger girls that need support with hair loss kind of how to navigate it if they need more resources, if they just need somebody to talk to who also has alopecia.”

Above all, Johnston is excited to be able to help others through this experience. While she was supported well, she wants to do the same for others. Whether it be through modeling, mentoring, or social media, she’s happy to do what she can, however she can.

“I try to and help support people because at the end of the day, that's kind of what fulfills me is to feel like I'm helping other people, even if it's in the smallest way possible.”

For Johnston, her journey with Alopecia Areata and her hair loss is something that has given her more identity and personhood in this life. She has become more than her hair.

“I've gotten to a place of peace, where I would actually be sad if my hair grew back.”

Five tips for working with a client with Alopecia

 Be educated on what alopecia is

 Hair is hair, and should be treated as such (washed blow-dried treatments)

 Make sure your client feels comfortable and can be vulnerable with you

 Make sure you know if the wig is glued on or not before working on it

 Understand why the hair loss is happening so that you can support in the best way possible