Opinion: Living with alopecia - Michelle Prendiville

Living with Alopecia areata for the past 20 years has taught me to just get on with it - and to be brave.

That doesn't mean when reporter Gill Higgins came knocking and asked me to share my story on the Sunday programme on TVNZ, that I didn't automatically feel the blunt force of fear. Questions quickly circled around in my head as to whether I was ready to be this vulnerable.

But I realized I needed to be brave - a value I had leaned on at so many times in my life.

Like when I was I was five, and my parents discovered my first bald patch on my head. Hair accessories started to become a mainstay adorning my head - headbands and hats would be used to cover the bald patches, and helped give me the courage to fend off questions from curious adults and nasty comments from the school bullies.

When I was ten, I was extra brave.

I had one last patch of hair on the top of my head. As much as I wanted to hold on to those final strands of hair, I knew it was time to accept I had Alopecia.

It was time to say goodbye, so we shaved the last little bit of my crowning glory off.

From then on, I've worn a wig. I count myself lucky to get to do that. My wigs are the kind that appears natural and only the eagle eye can pick out it's not real. Importantly, they have an incredible grip, even a firm tug won't pull them off.

Wearing a wig allowed me to be the kid I wanted to be. I had fun, played sport, went swimming and was carefree. And I didn't have to talk about my hair, or lack of it.

My parents let me make that choice.

At that age, I didn't want to deal with the questions and the drama that I assumed would come with it. You know, like any teenager, I didn't want to be different.

Growing up, the only person I knew that had alopecia was Anna Reeve (Fitzpatrick). She was the first bald female model in New Zealand, and I thought to myself, if she can get on with life and be this amazing public figure, well then, so can I. I didn't need to let this hold me back.

In my 20s, bravery kicked in again - at 25, I decided it was time I shared with the world I had Alopecia.

I remember at that moment a huge weight was lifted off my shoulders, the secret I had been keeping for 20 years was out there. It also empowered me to do the work I wanted – to be a voice and inspiration to others going through this condition. Particularly young girls.

Through my experience of reporting at the Tokyo Paralympics, I learned visibility was everything, and I had a platform I could use.

When I was a child, Alopecia wasn't talked about. There were no support groups and I felt if I was open about it, I wouldn't belong.

What's been amazing since "coming out" is the community I've discovered. I've met girls, boys, women, and men all on their own crazy journey of Alopecia.

I was once told to only share my story for me. Do it if it makes me happy.

While I can be proud to say, I've done it! This story isn't just for me.

It's for the little girl who woke up with clumps of hair on her pillow, the girl who saw the worry in her mum's eyes.

It's for the girl who went to school scraping whatever hair she had left to hide the bald patches.

The girl who went to countless specialist appointments trying to find a cure.

It's for the girl who took steroids to fix herself.

The girl who was teased for having cancer. But really had Alopecia.

It's for the girl who lied about having Alopecia because she didn't want to be different.

But this story is also for the girl who fell in love with herself.

The girl who found her voice.

The girl who went swimming, went wakeboarding and even lost her wig in a lake.

It's for the girl who shares her naked self to those most important to her, or the girl who shares it to everyone, every day.

This story is for the girl who will go through one of these things tomorrow, next week or never in her life.

But most importantly it's for the girl to know she is not alone, for the girl who won't be afraid to tell her story.

And the girl who will now be inspired to share her own story- and be brave.

For more on the Alopecia story from Michelle and others, watch Sunday on TVNZ1 at 7.30pm tonight.