Alopecia is an autoimmune condition that means people start to lose their hair, ranging from a small patch on the head, to the loss of hair over the entire body.
It happens when the immune system starts to attack body tissues – in the case of alopecia, specifically hair follicles, which causes hair to fall out.
Alopecia areata usually means a patch of hair will be affected, but this can advance to alopecia totalis, which is a total loss of hair on the scalp. There’s also alopecia universalis, which is the total loss of hair from the whole body – including eyebrows and eyelashes.
Although the hair loss doesn’t generally affect physical health, it can affect emotional health and self-confidence. For a lot of people dealing with the disease, it’s never just hair. To find out what it’s like living with alopecia, i spoke to two women living with the disease.
Naomi Hall started noticing she had alopecia just short of her 22nd birthday. “A few days before my 22nd birthday back in 2014, my mum was sat on my bed and said I had a small bald spot on the right side of my head. I didn’t worry about it too much, I thought maybe I’d rubbed it and pulled some out so left it at that. Within 3 weeks I was completely bald. It would just come out in clumps.” she says to i.
Naomi’s alopecia shows just how random and unpredictable the disease can be. “I had alopecia universalis for around 3 years, but about a year ago all my hair on my head grew back, quite thin and short. But then within a month, I had patches forming again, so now I have alopecia areata.”
“I used to have really, really long, thick hair, I now have thin, limp very short hair, that grew back curly, and even though I’m thankful for regrowth I look in the mirror and I don’t see myself, I see a stranger, and this is very disconcerting,” Naomi says.
The effects on her self-confidence
Like many people, Naomi does not know what caused her alopecia. “People often say alopecia is caused by stress, but my life was very calm and happy at the time I started losing my hair” she says.
“I was so upset, confused, angry and felt a real sense of loss when my hair started falling out. I always say I feel like I went through a grieving process for my hair.”
“It affected my self-confidence massively at the beginning, I became very withdrawn and anxious, refusing to acknowledge the reality,” she says. “I have no photos of me with a bald head – which I think speaks volumes to how uncomfortable I felt.”
“I would wear a wig every day, and put on false eyelashes. Over time, and with the love and acceptance of family and friends I’ve become more confident. I am much more accepting of myself and have luckily landed a new job working for the charity Alopecia UK, where we help other people to deal with their condition, through support, awareness and research. They are amazing.”
“I have alopecia universalis, so no hair at all, and I have never had any signs of re-growth.” says Hannah Goozee.
“My alopecia started in my final year of university. It started as alopecia areata so I was able to cover the patches with the existing hair, this progressed to more patches and got a lot thinner, and now I have no hair.”
“I have had alopecia for about 8 years now but it has only been the last few years that I have started to come to terms with it. It has had a huge impact on my daily life and as I wear a wig, I still get anxious about staying over at places.”
Wearing a wig
Hannah described shaving her hair as the hardest part of having alopecia. “When my alopecia was progressing from areata to universalis, it was very thin with lots of patches, so I decided to shave it off. I shaved it in my bathroom alone on a Sunday night. This was my darkest moment throughout my whole journey and when I think about this now, it still brings tears to my eyes.”
“I wear a human hair wig at all times now and don’t change my style so that it is not obvious that I have alopecia to people I meet at work and even with friends. I would like to be able to change my style more frequently but it is expensive, and I like the comfort of my current wig as it is moulded to my head.”
“I have never been an outgoing confident character but developing alopecia in my early twenties definitely didn’t help. The topic of hair comes up so much in conversations, and it’s often difficult to broach the subject as hair-loss and wigs still seem like a taboo subject and are often joked about.”
Meeting other people with alopecia
Although having alopecia and coming to terms with her hair not coming back has been difficult for Hannah, meeting others with the condition has been helpful. “I have been involved with Alopecia UK and meeting others with the same condition has been a lifeline. For the first time last year, I went to the pub with no hair, as I had the support of the group. I don’t feel like I will ever be 100% confident with it but I get through every day and am grateful that I am healthy.
“Overall, alopecia has made me stronger and I have made friends with people that I would never have met if I didn’t have Alopecia. I dream of waking up with a full head of hair, pony-tails and going to the hairdresser for a wash and blow-dry. But I am also OK with getting home after a long day and whipping my hair off.”