I lost all my hair when I was 9 years old

What life is like when you have alopecia

I was seven when my hair first started falling out, in patches the size of a 20-cent coin. My pillow would be covered and handful after handful would come out in the shower and into my hairbrush.

It wasn’t until I was nine, when my whole head of hair fell out, that I was diagnosed with alopecia totalis, an autoimmune condition with no cure. No-one even knows what causes it. My hair has fallen out three times now – when I was nine, when I was 14 and most recently when I was 28.

I’ve seen every specialist and doctor my parents and I could find. I’ve drunk white powders from trichologists, I’ve had black tar slathered on my head every night – a bizarre doctor thought it would make my hair grow back, but all it did was create a massive mess – I’ve tried high-strength topical treatments, crazy diets, naturopaths – I’ve tried it all. Nothing worked.

The first time it happened, my parents got me a wig and I absolutely hated it. Back then the wigs were horrendous – synthetic, stringy and unbelievably uncomfortable.

When we moved to a tiny country town in Ireland I thought it would be a fresh start – no-one at school would know I wore a wig. But it was clearly more obvious than I thought – I’ll never forget the day one of my close friends ripped off my wig in the middle of the playground and threw it on the ground. I threw it back on, ran to the bathroom and just cried for hours.

The most distressing part of having alopecia has been the wigs I’ve worn, and the fear that they would either fall off or get yanked off in public. In high school I tried a suction-based wig that felt like it added an extra five degrees to my head in summer, but if I started sweating it would lose its grip and fall off.

Alopecia is scarier the second time you get it, because you know what’s coming. The worst stage is when the hair starts falling out and you get bald patches, and there’s nothing you can do except wait to see if they spread.

When I lost my hair again four years ago, I made the decision to shave off what was left and go straight to wearing a wig. I’d probably only lost around a third of my hair, but I took the attitude that it wasn’t going to beat me this time; I wasn’t going to go through another six months of feeling self-conscious and waiting to see if it all fell out.

I was having what I thought were high-quality wigs glued to my head, which made my scalp blister and I suspect made my hair loss worse, and then the wig hair started falling out faster than the hair loss from my head.

The turning point came the week of my birthday. I had an event on and all this hair was falling out of my wig and I was beside myself. I was over 30, but I called my parents, crying hysterically, because I didn’t know how I was going to leave the house.

After that I started researching other wigs and finally found amazing versions overseas. It totally transformed me. I felt confident wearing the hair out and I could do anything I wanted in them – play netball, go swimming, go to the gym.

I didn’t want other women to have to go through the torment of not having beautiful wigs on top of not having any hair. I just thought, I’m going to change this. I booked a trip overseas with my last bit of annual leave, came back and resigned from my job a week later to open my own wig salon, The Beautiful Hair Boutique.

Until I opened my business I’d never met another person with alopecia, so I felt like an alien. Meeting all these people and realising I’m not the only one without any hair has been so good for my confidence. I’m of the mindset now that if I meet someone and they’re not happy with it, I don’t want to know them anyway.

There are benefits to wearing a wig – you can get your hair done and then jump in the shower without worrying that it’s going to get wet. I’ll go running in one wig and have another, all curled and gorgeous, ready to go. I can change my hair colour at the drop of a hat.

I get my eyebrows tattooed on and wear eyeliner to try to hide the fact that I don’t have any eyelashes. It’s been really hard and it’s taken me a long time, but I’ve come to terms with it now: some people only have one leg, or one arm, and I just happen to have hair this way.

Alopecia Awareness Week is on now until November 19. To find out more, visit the Australia Alopecia Areata Foundation.

Related stories