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Hair

“It changed my life”: how online hair loss groups are helping women with alopecia

Facing hair loss and alopecia can be stressful and isolating to experience, but thousands of women are finding solidarity and camaraderie in online support groups and forums. 

I love and hate my hair. Many people can probably agree. On good days, my curls flow effortlessly or twist into that perfect updo. On bad days, when I have to fight with the comb, I remember my mother determinedly raking through frizz each morning before packing me off for school.

So when it started falling out in scarily large clumps – in the shower, when I brushed it, or suddenly tangling up the hoover brush – it felt like the end of the world. With every new sparse patch, I no longer recognised the beast I’d been taming for years.

Naturally, I turned straight to the internet – where I found a host of support groups, all with people going through the same struggles as me. 

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Online groups made specifically for hair loss receive dozens of emotionally charged posts each day: “It’s taking over my life”; “I cried for hours today”; “I’m struggling with my self-esteem right now.” The subreddit ‘FemaleHairLoss’ has recently swelled to over 19,000 members, with the most popular groups on Facebook boasting around 30,000 members each.

Female hair loss can stem from a number of causes and conditions. Around one-third of people assigned female at birth will experience it at some point in their lives. Commonly, women will suffer from telogen effluvium or from one of many forms of alopecia.

Chris Rock’s recent insensitive joke about Jada Pinkett Smith’s struggle with alopecia has put a spotlight on these conditions and the very real struggles women face in private. Though groups received an influx of members since last year due to COVID-related hair loss, moderators of ‘FemaleHairLoss’ say it’s “too soon to tell” if this has influenced more women to join the community (though members of these groups rushed to condemn Rock’s mockery). 

Tala, 38, based in San Francisco, is a founding member of FemaleHairLoss and wishes more high-profile women would speak out about this condition. “Initially there was no active space online for a lady with hair loss,” she tells Stylist. After being diagnosed with androgenetic alopecia and joining a subreddit for general hair loss, she noticed that women seemed hesitant to share their experiences in a traditionally male-dominated discourse. Tala has seen great success in establishing her own group: “The sheer number of women who have mentioned how much the group helps them is all the proof I need.”

“It’s freeing to see other women going through the same thing,” Mel, 30, based in Berlin, tells Stylist. “Especially at the beginning of my diagnosis, I spent every minute in this group.” Mel joined FemaleHairLoss over a year ago after friends and family called her concerns over her hair loss ‘neurotic’. “I was always known for my full head of hair; nobody was taking me seriously.”

Joining online forums greatly helped with Mel’s anxiety and mental health. Reading posts expressing the same anxiety, sadness and sense of loss provided a sense of validation for her emotions and she felt less alone.

alopecia-hair-loss-online-support
The subreddit ‘FemaleHairLoss’ has recently swelled to over 19,000 members, with the most popular groups on Facebook boasting around 30,000 members each.

Younger women often feel particularly isolated in their experiences, though around 12% of women will experience hair loss before age 29. Rena* began noticing significant hair loss when she was 23; “I thought that the hair loss I had didn’t really happen to people my age,” she told Stylist. “My hair has always been such a big part of my identity and hiding losing it from people around me was scary and embarrassing.”

Rena was delighted to find other women in their twenties in the support groups she joined. “Seeing other women’s experiences has helped me accept my own condition. They’ve always commented and celebrated when I posted a good update pic and comforted me when it got worse.”

Her experience is largely similar to my own. I was only 21 when my hair began falling out, and I felt so alone – none of my friends could understand what I was going through. Through the positive and encouraging comments left on each of my posts, I gained the confidence to pursue an AGA diagnosis. It changed my life. I had long wrestled with the idea that my hair might never grow back, but when my dermatologist confirmed this fact, I felt relieved. I had to accept what I couldn’t control and finally stopped obsessing over maybes.

Hairmedic trichologist Ian Sallis notes “a direct correlation between loss of hair and loss of identity – and with women, it can feel like losing femininity. There are huge ideological factors that are totally disproportionate to the physiological aspect of hair. For a younger woman at the start of their career, image seems absolutely crucial, and she’s constantly fed this image of what hair ‘should be’.”     

“Women who look like me are not represented in the media,” says Lizi Jackson-Barrett, who lost all of her hair to alopecia. “But then I found the Facebook group for Alopecia UK – and not only was it a great source of information and advice, I suddenly saw myself represented every time I scrolled.” Jackson-Barrett chose to harness the power of self-acceptance by becoming a confidence expert and speaking publicly about her hair loss journey. Seeing photos of other women who are bald and okay with it helps so much with the process of coming to terms with the way that you’ve changed.”

Many women join these groups to search for solutions when they cannot afford medical treatment. Minoxidil, the only proven topical treatment to regrow hair, is still not available through the NHS due to its cost. My own hair loss began a years-long journey of pills and potions, special shampoos, diet changes and microneedling, all in a desperate attempt to halt the developing bald patches that covered my head.

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“Support and knowing that you’re not alone is really important,” says Sallis. “But how many people online have proper information in those groups? You’re dealing with people’s fears and emotions. So there’s a lot of money to be made in hair loss – the market is very lucrative. There’s so much misinformation about medications and treatments.” Sallis urges women suffering with hair loss to seek appropriate medical attention and contact their GP primarily.

Like many women in support groups, Rena felt brushed off by doctors and experienced ‘medical gaslighting’ but reading other women’s experiences pushed her to continue for a diagnosis. “I wouldn’t have continued to advocate for myself otherwise. And most importantly, I don’t know what my mental health would be like without these groups.” 

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