alopecia experience  

It isn’t cancer, it’s not a choice and it certainly isn’t a fashion statement; it is a whole other thing in itself. Alopecia. Eight letters I live with that usually garner two different reactions, there’s the “she is so cool, she shaved her head” look, or “oh poor thing: she’s dying”. Either way, this egghead doesn’t appreciate either thought. I am one of them; I say ‘them’ like it’s a club, and maybe it is. It’s a different way of seeing baldness. To anyone else not losing their hair this will sound odd, but to me the best compliment I can get is “you’ve got a really nicely shaped head”. The shape of your head probably isn’t something you think about often, maybe in a fleeting moment, maybe as you brush your hair. Compliments about my face always feel like platitudes when I am in the state of the endless forehead; I was not often called beautiful before, so why now? It feels disingenuous sometimes, losing it’s meaning like the way a word does when you repeat it over and over.

Two years, multiple blood tests, one blue, a brown, two white, and one pink doctors’ offices later, we still have no answer for why this keeps happening to me, for why the Alopecia just won’t let up. It might be stress induced, but I also have a weak immune system, so when those two worlds collide, my body resorts to attacking itself (thanks body, like that’s going to help with the stress thing).

When patches start to grow back, comments from near strangers are inevitable – yes, thank you! I too am proud of my hair follicles, well done little fellas! Thank you for noticing, for saying something. But I can’t be rude, and I do appreciate it. It feels at times to be a strange thing to have to be grateful for, the thing that used to be a given – isn’t there a saying, at least I still have the hair on my head? At one point I had hair long enough to cover my boobs, supposedly every little girl’s dream. I recently moved to New York from London, luckily The Big Apple finds my stark lack of hair and eyebrows trendy. I’m hip. That feeling of being pitied in London replaced by a strange admiration for how daring I am, as though I had a choice. People voluntarily shave their heads, so I’m not stared at as much as I would be in other places around the world. There are also all of the famous female figures that shave their heads (so many people have called me Sinead it may as well be a nickname) and they all look gorgeous, but it doesn’t stop me feeling uncomfortable. In saying that, there is a difference between the shaved head look, and the squeaky bald look; one looks like a fashion statement and the other looks like an illness. Either way I am not a trend; what I have is real.

And I feel masculine: having long flowing locks is so intrinsically tied with the archaic idea of femininity most people still hold that it’s hard not to. I don’t feel like I can wear the things I used to enjoy wearing – leather jackets, an old favourite, now make me feel like a boy – not androgynous in a trendy way, but in a way that makes me feel undesirable because it wasn’t my choice. Longer hair, any hair at all, seemed to balance it out but now it feels like a statement I don’t want to make. Bandanas are a big no, obviously – then people really think you’re dying. Wigs are itchy as hell; they feel foreign, not my own. Besides, hair that isn’t mine freaks me out anyway. Fake lashes won’t stick to naked eyelids, no matter how much glue I layer on, because here isn’t anything for them to stick to. And, because I know you’re wondering, those places where so many women would be more than happy to lose hair, it hangs around in a slightly patchy glory. At least Alopecia has a sense of humour.

But, like most things in life that kind of just suck, there’s a silver lining; support I have had and the ways in which people have stepped up. My family are very logical people; after the initial upset and concern about my Alopecia diagnosis, my parents were discussing which doctors to go to and what tests they may have to do. Four days after it started falling out I found myself sitting on a chair in our kitchen with mum shaving my head, following this the three men in my family shaved their head in support. I had a little fan club, people to ease the awkwardness of it all.

There’s family, but there’s also friends; I go to drama school in New York, and I count my lucky stars for the angels that surround me when I’m there. When I lost my hair the second time in my second week at a new university in a new country, perfect timing, I had three people knit me hats for the brisk winters (you can’t appreciate how warm your hair keeps your little head until it disappears). Another shaved his head with me in support. My incredible roommate bought me soup about once a week when I was feeling rather down. Some people are never exposed to these things, leaving them unsure how to respond, but kindness goes a million miles. Months after it came out, I showed my best friend a photo of us during my folically challenged days of both of us wearing hats, and he looked at it and just said, “if you didn’t have hair, then neither did I”.

People like these are the ones who made this egghead’s smile a little brighter.

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Illustration: Chiara Lanzieri

  • Hannah Debourgh

    This is such an inspiring read; you sound like an amazing woman!

  • Sophia Castano