Alopecia areata led to Katie moving cities, but Instagram helps her talk about hair loss

A common complaint about social media is that it encourages negative body image — but for Katie Hale, it has helped her find a community of other “young women who also look like me”.

Indeed, it’s not Instagram but her own subconscious that has a habit of confronting her in ways that “can be really, really distressing”.

“I’ll see myself in a dream — it probably happens every few months — and I’ll have hair and I can’t quite figure out what’s wrong,” she said.

“It kind of just hits you a bit harder the next day. I always notice my mental state after one of those nights is just a little bit more challenging.”

Seven years ago, Ms Hale, a communications adviser who today lives in Melbourne, was diagnosed with alopecia areata, an auto-immune disease causing hair loss.

“I was 23 so it was quite a shock to the system having that happen,” she told ABC Radio Adelaide’s David Bevan.

“I had beautiful, long blonde curly hair. My hair was my thing.

“I lost half the hair in the space of a week, it just fell out quite rapidly, and then over the course of about four to six months or so it progressed to my entire body and it’s never come back.”

‘A lot more support worldwide’
In decades gone by, alopecia areata wasn’t easily talked about, but that situation is slowly changing for the better.

Last Tuesday was Bald is Beautiful day, and initiatives such as Alopecia Awareness Month (held in September in countries including the US) have helped reduce reticence.

“There’s a lot more support worldwide, there are different support groups, different Facebook groups and a lot more people are talking about it,” said Liz Bear, who was diagnosed when she was 30.

“Since 2010, we’ve had an Australia-wide group — the Australia Alopecia Areata Foundation (AAAF) — so we’ve been able to offer awareness, support and also been able to help with research.”

Ms Bear is the SA branch manager of the AAAF and said an alopecia diagnosis could trigger strong and complex emotions.

“It’s hard to describe. When you go in and see a specialist, they [might] say, ‘It’s alopecia but it’s only hair’, and then you turn on the TV and they’re talking about this shampoo and that shampoo,” she said.

“It is a grieving process. It’s part of yourself that you’ve lost.

“Some people prefer to keep it private. Sometimes, people don’t even want to let other family members know.”

Another choice is whether to wear a wig.

Ms Bear often opts to use one, but goes without when she attends annual camps for young children with alopecia — the next of which will be in November, during Australia’s own awareness week.

“Everybody makes that decision themselves at a certain point,” she said.

“Some people decide straight off that they don’t want to wear a head covering — ‘this is me, this what you get’ — and other people might wear wigs or scarves for a while and then say, ‘No, I’m sick of doing this’.”

‘A great little community’
Alopecia was thrust into the public spotlight at this year’s Oscars, when Will Smith slapped Chris Rock in the face in response to a joke about the bald head of his wife Jada Pinkett Smith, who has alopecia.

“I don’t think the Will Smith situation helped — I think that caused probably a lot of harm and a lot of hurt and a lot of yukky feelings amongst the community,” Ms Hale said.

But other people — including federal Opposition Leader Peter Dutton, and Neighbours actor Alan Fletcher — have since come forward to talk about their own diagnoses.

In Katie’s case, she still confronts challenges on a daily basis, and she said there was still “a long, long way to go”.

Her diagnosis was part of the reason she decided to move from Sydney to Melbourne five years ago.

“I get stared at on the street every single day, people make comments to me, people crack jokes as they walk past me,” she said.

“I moved cities to have a bit of a fresh start, and to have people [around] who didn’t really know me beforehand, just because you do get treated quite differently.”

But Ms Hale is herself part of the push for change, and maintains a proud presence on social media.

“Instagram is amazing,” she said.

“It took me a long time to find other people who look like me and that kind of thing but it’s a great little community — I’ve got people in London and America and around Australia.

“It connects you with other people who are young and female … and that can be really comforting — when you find people that are like you it’s just really heartening and really warming.”