health

"From the time I was six, my hairline marched slowly up the back of my scalp."

Nobody at my high school knew I didn’t have hair but the burden of keeping the secret was getting to me. There was so much I couldn’t do just in case my friends figured out I was wearing a wig, things like the swimming carnival and going on school camps.

I was 16 when my first boyfriend asked me if there was something I needed to tell him. He said, “I think you’ve got something to tell me that I think you might be a bit afraid to.” It was really lovely of him actually.

We dated for three months.

If he hadn’t asked me directly, I would have been too scared to tell him. But after that conversation, I started telling everybody and it was really empowering.

Stefanie recently received the best wig she’s ever owned, courtesy of Variety Children’s Charity. Now she can try out all of these amazing hairstyles.

From the time I was six, my hairline marched slowly up the back of my scalp. Because there’s no cure for alopecia, I was thrown into a state of helplessness, where everything couldn’t be fixed by a sticker and lollipop.

My hair started falling out in chunks when I was 11. I’d find it on my pillow, on the bathroom floor and on my clothes – it was everywhere except for on my head. Soon, I became painfully aware that I shared my baldness with witches in fairy tales and old men, and that being different was something to be ashamed of.

I didn’t just lose my hair, I lost my confidence, sense of self-worth and a feeling of belonging.

When you have alopecia, hair becomes the persecuted minority, attacked by the soldiers in your body called the immune system. The guerrilla militants of alopecia areata create patches of hair loss on the scalp, an organised attack by alopecia totalis wipes out the entire population of hair on the head. Then it’s up to the secret service agents of alopecia universalis to pick off the remaining hairs on the body. This includes the eyebrows and eyelashes.

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Stefanie wearing her new wig (left) with her friend Rosie (right). Image: Provided

Strangely I still have hair under my arms but not much on my legs which is good.

High school ushered in a new age of secrecy. My beautiful wig granted me the normalcy I craved and I told no one about my condition. Maybe if I ignored what made me different for long enough, it would just go away. I was wrong.

An intense sadness infiltrated my system. It shut me down and rebooted me and the world became darker. I became convinced that the way to restore my damaged self-esteem was to trade in all of my ‘abnormalities’ for things which were acceptably ‘normal.’ In thinking like that, the parts of me that were too dark, too imperfect and too different were kept out of the light, unable to be loved and accepted by anyone.

It was a long process, but over time I realised that self-worth wasn’t something that would be given to me, it was something I had to give myself. I didn’t owe the world anything – not prettiness, not perfection, not stoicism – the only thing I owed was my authenticity. Being me was enough. What I’ve learnt from my condition is that beauty isn’t so much about what you look like, it’s about who you are.

Stefanie with friends Mel, Jess and Sophie. Image: Provided
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Looking back, my journey was made so much easier by my wig. It freed me from the ‘bald girl’ label that I’d acquired in primary school and I didn’t have to endure any stares, comments and pitying looks. Now, I use my wigs as a form of self-expression. I can change my appearance based on my mood and it’s my way of showing that although alopecia is a part of me, it’s not the whole me.

This year Variety launching their ‘Wigs for Kids Program.’ It aims to give grants for wigs of up to $6,000 to young people suffering from alopecia. This program will change lives. I should know, because I was a beneficiary.

The most amazing thing happens every time I share my story; someone always comes up to me and says, ‘I thought it was just me who struggled with these things.’ I’ve come to the conclusion that I’m not as different as I originally thought. My struggles have a universality to them.

We all want somewhere to belong, without having to face rejection. We want to feel connected, without having to need anyone. We want to strength to be authentic, without having to risk not being good enough.

What makes me different is also what makes me strong enough to face these things and I love alopecia for giving me that.

Read more about Stefanie on her Instagram page @stefhodgson.

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