real life

'I've had alopecia for 21 years. No hair on my face, head and body. This is what I want you to know.'

Hello, I'm Camille Gray, a human woman with alopecia areata. 

I've had alopecia for 21 years. No hair anywhere on my face, head and body. 

(FYI alopecia areata is an auto-immune condition that affects two per cent of the population and causes our confused immune system to attack our hair. People can lose anywhere from a small patch of hair that grows back, to every hair on their body. Which can grow back. And fall out again.)

There is a debate raging about the Jada Pinkett Smith, Will Smith and Chris Rock incident but what I want to talk about is what it's like to have alopecia. 

It’s frustrating as heck.

People say "it's just hair". Sure, we know it’s only hair, but so what? We want to be pretty. We used to be pretty. And now we’re "interesting", "stunning" and "intriguing". And that’s if we’re lucky enough to have great skin, teeth, and be young and slim. 

Having no hair makes you feel unattractive, having no brows makes you look inhuman and no lashes unfeminine.

But hair also has a purpose. It protects us from sunburn and cold. Our eyebrows stop sweat from running into our eyes, lashes protect our eyes from dust and can be mascara-ed and fluttered to good effect. And nose hair stops germs from invading and taking over our brains.

Which is a shame because alopecia sure takes over our thoughts.

Image: Supplied. 

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When we lose our first patch, our doctors and hairdressers tell us with confidence that it’s common and will grow back. And for most of us, thankfully, that’s true.

But for some, the patches get bigger. And then sometimes the patches join up.

So then we twist our hair into weird styles to try to hide the holes. Because people seeing your bald holes feels like... people seeing your holes.

So, we do our best to protect ourselves from this indignity. We avoid swimming, windy days, rainy days, sweaty days, sports, open-plan offices, babies that grab hair, lovers.

Our loved ones feel helpless when they hear us sobbing in the shower as we retrieve tennis balls of hair from the drain, they hug us as we cry ourselves to sleep and again in the morning when the pillow is covered with hair.

They try to convince us that we are still loved, still beautiful, still worthy. (And they discreetly adapt to our changed appearance, never saying that they also wish we had our hair back). 

They learn to live with and comfort a person in grief, while ignoring the weird looks in the street, the questions from strangers asking if we are dying. 

They try not to worry that our sister or daughter or son may also develop alopecia. 

They discreetly get their hair cut, they bite their tongue when someone has a "bad hair day", wants to "pull their hair out" or is "too scared" to get a fringe. 

Our loved ones drive us to appointments where professionals tell us that there’s not much they can do. And then to pseudo-professionals who promise the world but deliver pain, foul-tasting potions, empty wallets and the feeling of guilt.

What did I do to deserve this? Did I bring this on myself? I am losing my hair yet this wellness chick tells me that it won’t come back if I continue to stress. How can I not stress when I am losing my hair? And if stress is the cause, then why am I the only bald woman in Sydney? 

In our desperation for a cure, we pay $60 to a guy who tells us that we triggered our hair loss by eating avocado and bananas in June. 

Despite the lack of success, we continue painful and expensive procedures because we tell ourselves that otherwise we won’t earn our hair back. We have to try harder. And BE POSITIVE.

But we are trying to control a condition that is unpredictable. 

Sometimes, that bald patch gets too big and we can no longer hide it, so we decide after many tears and sometimes years... to shave our heads. Then the people we love worry that we might regret it (but I thought you said that it was only hair!) But actually, shaving our heads can feel like reclaiming power.

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And then someone will say that we should get a great wig and that we’re lucky, we can now be a redhead on Monday and a blonde on Tuesday. But you don’t need to be bald to do that. And there’s a reason why bald men don’t wear wigs (or heels or corsets.) They’re uncomfortable.

If we’re lucky, the hair loss stops there. 

We get to be a striking, slim, tall, toothy, clear-skinned bald stunner. With perfect brows and obscenely long lashes. But sometimes, alopecia steals those too.

And that is the hardest part. Our brows and lashes define our face. That’s why cartoon animals always have brows and lashes. They make us look human and masculine/feminine. And our alopecian brothers mourn the loss of their beards.

Image: Supplied.

And then, after all that, you would think it doesn’t matter. But let me tell, you, I resent alopecia stealing my body hair. Sure, this saves me time, pain and money, but MY BODY, MY CHOICE, DAMMIT.

Yes, OF COURSE, I’m glad that I don’t have cancer. And yes, it IS cute when a pre-schooler asks if I’m a pirate (my fault for wearing a bandana and hoop earrings). But it’s not much fun when a family member tells you you’re an attention seeker, that you should wear a wig so that people stop feeling sorry for you. And those ads about shampoo, lash serum and mascara are torture.

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It takes a lot of bravery to go into the world when you don’t look like you. When you don’t recognise yourself in the mirror. Or even your own shadow.

The only depictions of bald women in the world are of shop mannequins, nuns, cancer patients, baddies, aliens, or Britney Spears whose shaved head was mocked and condemned. 

So stepping out with nothing on our heads is really hard. And we can feel both brave and vulnerable.

Overall, with time, we adapt. Wigs, scarves, beanies, sunhats, free-balding, makeup, tattoos. None of this is our first preference. And there is no right way to alopecia. But with respect, love and support, we start to live again.

Image: Supplied.

For more information about alopecia, visit Australia Alopecia Areata Foundation, a non-profit providing education, support, social connection, research and discounts on products for people with alopecia and their families.

If you think you may be experiencing depression or another mental health problem, please contact your general practitioner. If you're based in Australia, 24-hour support is available through Lifeline on 13 11 14 or beyondblue on 1300 22 4636.

Feature Image: Supplied.

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