Losing it
Anna* is a 21 year-old student from London who happens to be bald. Practically speaking that means she probably owns more hats than you and this Christmas she got a wig. She likes the hats because, at first at least, wearing a wig feels like admitting that your hair isn’t growing back.
“My mum came up when it first happened and we have a family friend who works at a wig company so she borrowed a load from him and brought them up. She was like, ‘try them on’, but right at the beginning that seemed like admitting that it was going to a permanent thing. It’s admitting that it isn’t going to come back next week.”
Anna suffers from a condition called Alopecia Areata which, according to the National Alopecia Areata Foundation (NAAF), around 2% of the population can expect to be affected by in their life time.
Alopecia is any hair loss and Alopecia Areata is hair loss as a condition itself, not a symptom of something else. It is most commonly developed in young adulthood and under 1% of all cases develop into Alopecia Areata Totalis (total scalp hair loss) or Alopecia Areata Universalis (total body hair loss). Anna initially lost all of her body hair.
“It started just after getting back for second year, so a year and a half ago. And it was just very, very quick,” recalls Anna. “Bits of thinning sort of got a bit extreme and then it got to the point where I was going, ‘is it just me or is there less at the front?’ And you have to check with someone because you don’t want to sound like a massive hypochondriac and everyone’s like ‘it’s fine’. But it wasn’t.”
Within two weeks Anna had “massive chunks and holes” in her hair and by the time the doctor referred her to a dermatologist there was no real questioning the diagnosis. “It was pretty much half gone,” says Anna, “It just was what it was. They took blood tests and stuff but it was pretty obvious. I didn’t even know you went to a dermatologist for a hair thing. And they keep looking at your nails, which is weird.”
A big part of the difficulty of the disease is its unpredictability and the lack of real medical understanding of it. In around a fifth of cases a family history of Alopecia is present and some doctors have suggested stress may be linked as well. Alopecia areata is an auto-immune skin disease. In simple terms it occurs when the skin’s immune system treats the hair like something that should be attacked. Anna has no family history of alopecia and has not had big stress problems. She does suffer from another auto-immune disorder, to do with digestion, which may have made her more vulnerable to the disease. Full regrowth is fairly common but a prognosis is difficult and Anna has yet to receive a clear one.
Alopecia has received a fair amount of media coverage over the past few years due to the sudden hair loss of Gail Porter, previously most famous for being projected naked onto the House of Commons. Porter, having dealt with anorexia, severe bouts of depression including a suicide attempt, and a very public divorce, is quoted to have said she thought her hair falling out “must be a joke”.
Porter’s celebrity status has allowed her to make her baldness a statement and she has refused to wear a wig at all. She has no doubt struggled with the disease and her strength and sense of humour about it in the public eye are admirable. However, you can’t read an interview with her without comment being made on how beautiful she is anyway and how wonderful what she’s doing is. Life as a student suffering from the same condition obviously lacks the same glamour.
“It got up until Christmas and I don’t think I left my room without a hat. Even round the house. It just felt weird. Even now I’ve not really [not worn a hat] in public much, only round my house. It still feels weird. And yeah really cold!”
Anna only recently started wearing a wig and why she decided to do so is a difficult question to answer. “I just got bored of hats (laughs). I should have got it over with earlier.”
The movement ‘bald is beautiful’ has created in parts a bizarre reverse prejudice against wanting to have hair in the alopecia community. To most of us though, it seems excessive to accuse those who choose a wig of vanity. “It’s sort of like if you still wear lipstick and mascara then what’s different about a wig?” Clearly neither wig nor no wig should have a stigma associated with it. Anna prefers to avoid defining herself by her condition and this is currently the way she feels most comfortable doing so.
Discussing the online community Anna says: “There’s this Facebook group called ‘Bald is Beautiful’ which I joined early on and I still get people adding me. You know when someone adds you and you’ve got no friends in common? I see that they’re bald and you think this is the connection but should we really be friends because we share a disease ?”
“It depends what helps you I suppose. I have looked at some online support groups and it does seem that people define themselves by their diseases. How much medication, how many pills they take a day; it’s a competitive thing. I find it a bit odd.”
Odd and weird seem to come up a lot with Anna. She’s quiet by nature but it’s difficult to miss her disappointment in having to deal with all this. At an age when her peers are totally carefree she just wants to sideline her condition and get on with things.
“The good thing with being young is you can still have the hope that it will be fixed or over soon so hopefully by the time you’re twenty-five, thirty, you’ll be able to get on with the rest of your life. But then again you don’t want to seem like you’re putting you’re life on hold until you’re ‘fixed’.”
When you consider young people putting their life on hold it’s easy to get stuck on the big things: degree, relationships; but in reality Anna finds it’s the small things that feel important.
“Clubbing and stuff is difficult because… drunk people are twats. The first few times I was just so scared that a drunk person would remove my hat. Which would be quite a distressing experience,” laughs Anna, “And there was this one time, I was at a Christmas party last year and they were playing the chocolate game where you put on a hat and scarf and cut it up with a knife and fork, and I suddenly realised – it sounds trivial – if I rolled a six I would have to put this other hat on. Would I do it on top of mine? Would I take mine off? It was the most stressful dice roll I’ve ever made!”
Laughing a lot, Anna assures me that no hat issues ensued. She seems to approve of laughing at her disease, laughter and being allowed to be angry about it seem to be her main coping strategies.
“I have been down about it over time. Some days you’re like yeah this is fine, I can be a strong person bla bla. But…sometimes it’s pretty pants. And that’s the thing about people saying ‘I really respect you, you’re dealing with it so well…’ It sort of takes away permission not to be dealing with it well.”
Pressures to be ok have been greater than Anna thought they would. “Especially right at the beginning there were some people who’d be supportive and would send you texts saying ‘ooh I’m so sorry I’m thinking of you’, which is sort of fine, but then a couple of people who got upset because I wasn’t responding and being like thank you so much. It was like they needed confirmation of how supportive they were being. Its interesting, people’s versions of being supportive.”
In the beginning Anna was on steroids, before she was switched to immuno-supressants. Drugs trials are tiring and may have adverse affects. Medical journals report the psychosocial side affects of alopecia to be difficult to handle. Depression, anxiety and social phobia are all listed as common problems. Stories on help4alopecia.com, an online support network, talk about agoraphobia and emotional behaviour: in short it’s a time when you need genuine support, something Anna found difficult to identify. “You sort of feel like you’re someone else’s project. They’re going to make you feel better, and that’s their way to make them feel better about how good they are as a person.
“And they’ll lie to make you feel better. I made some off hand comment like ‘oh who’s going to fancy a baldy’ and laughed, ready to move on, and the other person was like ‘oh no no, it wouldn’t really matter’,” Anna laughs, “You just think shush. You liar.”
Anna seems to make much allowance for the fact that people don’t know what to say or do.
“With one of my friends I didn’t really explain properly what was happening and when I did finally talk to him about it he was like ‘oh thank god because I thought you had cancer’. I was quite sad because I thought: ‘do you not think that if I had cancer I would have told you maybe?’ But it was nice that he was concerned,” laughs, “And how do you bring it up? Do you just say ‘oh hi guys, you know I’ve been wearing hats all the time? Well…’”
Anna has had the total support of her family and has only had one direct negative reaction. “I was working at this kids’ club and this boy was like ‘I know why you wear a hat all the time, it’s because you haven’t got any hair!’ He was this whingey bastard but this other kid instantly talked about Kylie and Gail Porter, stunning people like that, which instantly made it positive. So basically the only proper negative response has been from some ten-year-old. Which is all right!”
In reality it’s not the negativity that is most difficult to deal with. “I’ve been going to church and stuff,” says Anna, who is Christian, “And a lot of the responses from people who I’m close to have been phrases like ‘God doesn’t give us more than we can handle’ and ‘this has happened to you so you need to keep praying’ and also ‘you can use it to show other people things’…that’s caused me quite a lot of issues with re-evaluating stuff.”
Anna is refreshing in her outlook. She doesn’t seem to be looking for any enlightenment from alopecia. “Even if there’s one part of you that’s like oh I’ve got a new feeling about life there’s still going to be this other part that’s just pissed off,” Anna pauses, “It’s shit, just let it be shit for a bit. The problem is with some people not letting it be a bad time, because they think if you believe in God you can’t have bad times.”
So Anna is still bald; a bald woman, which makes it difficult. And a bald student, which makes it very difficult. But she tells me her hair is slowly growing and is bright white, “which is cool,”. Her healthy attitude is probably best reflected in her amusement and bemusement when I first approached her about this feature.
“It’s not the most fun thing ever. I was speaking to somebody and they were like I can’t believe you stayed at uni but what alternative is there? I go home and what – just be bald and at home? You can’t just stop your life.”
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