A hair loss support group is looking for ways to further connect with people needing a little bit of care and support.
Martine Ellis and Emma Johns work with Alopecia UK to ensure those going through hair loss have somewhere safe, impartial, inclusive and kind to turn to when needed.
The group meets quarterly, with the next meeting taking place tomorrow, Tuesday 10 March, at the Guille-Alles Library, in the Dorey Room between 19.00 and 20.00.
“We’re really pleased!” said Ms Ellis. “The library has been really keen for us to use the space, so we’re really excited about that.
“For some people, alopecia is such a sensitive topic, and it’s a bit misunderstood as well. We’re interested in whether people want support in different ways, rather than face to face.”
The duo now want to hear from those in the community on how best to supply support on the digital stage, although they would like to avoid certain social media sites for a variety of reasons.
“When it’s a really sensitive topic, walking through the door to somewhere new can be utterly terrifying for people,” continued Ms Ellis. “So we’re trying to reduce that barrier.
“There’s something about maybe people being in the comfort of their homes, in their safe space, whether that they just open up their laptop or have something on their phone,” Ms Johns added.
“Having an online presence just takes the scariness out of getting somewhere.”
Whether it’s online or in-person, the role that support plays is a crucial one, with Ms Ellis keen to emphasise that sharing similar experiences, and being around those who understand what you’re going through first hand, can have an incredible impact.
“It stops you from feeling on your own,” said Ms Johns. “When you first go through any form of hair loss, whatever kind of hair loss you’re experiencing, whether it looks like ours or something different, you can just feel a bit on your own.
“Yes, you can google your symptoms and things like that, but there’s nothing like some sort of human connection where someone else goes, ‘you know, I’ve been through that. I know what it’s like’, or ‘I tried this thing that made me feel good about myself’.”
Both Ms Johns and Ms Ellis spoke about the support group with smiles on their faces, and a clear and decisive drive to make life better for those going through hair loss in Guernsey.
However they don’t shy away from telling the brutal honest truth of what it’s like to experience alopecia locally, in any of its numerous forms.
Ms Johns lost her hair at 14 years old. It’s been 20 years since then, so she knows better than most that its impact spreads to various areas of normal, day-to-day life.
She said: “I lost mine when I was going to school still, and the whole ‘is someone gonna pull my hair off in the playground?’ It’s, ‘am I going to be in science and we’re using the bunsen burner, and that’s highly flammable.’…I didn’t want to do PE, how could I do swimming?
“It has a knock on impact to everything, I mean, you’re walking in the road and it’s windy and you’re not used to wearing wigs, you’re like ‘is it going to blow off?’. It took me years to know, actually, they’re quite secure, but for years, I was holding on to my hair!”
One of the major issues faced by those with hair loss is the stigmas that come with it, and from both Ms Ellis and Ms John’s perspective, people are keen to pry.
Ms Ellis said: “People feel entitled to ask a lot of questions, and while we are open to educating people, if they catch us on a day where we’re not answering questions, that’s not really great.”
Ms Johns added: “There’s that assumption that you’re really sick and ill.
“It’s not just hair, it’s your identity. It’s your sense of belonging, in a sense of being secure and confident.”
Ms Ellis continued: “I’m in my late 40s, and I’m at a time where a lot of women my age are going ‘oh I’m starting to feel invisible because of aging’, but I can’t feel invisible because I stick out like a sore thumb.”
Both women are self-titled introverts, however they’re stepped up to the public facing roles of promoting the support group simply to help make things better.
“We don’t have to,” Ms Ellis said when asked about stepping into the spotlight. “No this is our choice, very much our choice.
“When you speak to another person who’s experienced any form of hair loss at all, you’ve got a shared understanding instantly. You can have a real, kind of valuable, helpful, supportive conversation without it draining your personal energy.
“We both feel it’s really important to educate people. It’s a bit selfish as well, because the more we educate people, the easier our lives get!”
Ms Johns added: “When I first started losing my hair, I didn’t know there was anyone that I could talk to. I’d never heard of Alopecia UK.
“It felt very isolating and alone, and although mine runs in my family, we still wouldn’t speak about it. It was very hidden.
“I think to be in the position where I’m a lot more confident than I used to be, and I don’t mind talking to people and being open, I would want to be that person for myself.”
The advice for those in the community that are currently going through hair loss is simple from the duo looking to open the discussion.
Ms Johns said “know that you’re not the only person there. Stay strong and own it as much as you can”.
Whilst Ms Ellis added: “My advice would be to seek community, because that has helped me enormously.”
The next support group session is tomorrow evening at the Guille-Alles Library’s Dorey Room, from 19.00 – 20.00.
If you’d like to reach out and speak to someone prior to attending, you can contact guernsey@alopecia.org.uk.