Kiwi woman opens up on the reality of life with alopecia

RNZ reporter Kirsty Frame.
RNZ reporter Kirsty Frame. Photo credit: RNZ / Samuel Rillstone

By Kirsty Frame for RNZ

First person: Four years ago my hair fell out. It started slowly. Like strands of hair making patterns on my black tops, the shower drain clogging up a bit more than usual, holding my breath a little when I would take out my ponytail.

Then all at once.

Clumpfuls of hair coming out into my hands over and over again. Fingers gingerly running over my head and feeling the smooth base of my scalp instead of usual fluffiness. One day was all it took for me to become unrecognisable.

Alopecia is an autoimmune disease that tricks your body into thinking that the hair growing out of you is bad, and so your body attacks it. Things like stress, traumatic events, sometimes childbirth can trigger the disease, but there is no defined cause and there is no known cure.

I was 20, shellshocked, and I didn't know how to navigate the road ahead - heck, I had only learnt about alopecia a few months prior when my hairdresser whispered it as a possibility. I got the official diagnosis from my doctor with a side of "it's just hair, don't worry" and was left to my own devices.

All I knew in the beginning was to hide. I needed to process what had just happened. I dropped half my university papers, ordered beanies and headbands and hats online (thankfully, it was 2018 and baker boy hats were all the rage).

I felt such a deep shame about what was happening to me. I couldn't bare to look at my reflection because I had no idea who was looking back at me. I didn't know her.

It's a bit of a rite of passage, I think, to be self consicious of your looks during those triumphant years of high school. I had always been a bit insecure about the way I had looked; the size of my forehead, my intermittent acne, my snaggletooth. But I had never felt ugly like this.

I had wisps of hair scattered across my head that were still shoulder length… that wasn't normal. I wasn't normal. My loved ones were wrapping themselves around me and telling me I was beautiful, but they couldn't drown out the voice that lived inside my head telling me that I was a freak. I wore something to cover my head at all moments of the day and night - in fact the only time I was exposed was in the privacy of my own bathroom.

With the tiny bit of hair I had left and a big thick scrunchie I could make a bun, put my hat on and some bits to the front of my face. Without a second glance you wouldn't think I was bald underneath. That hat became my uniform for months. That uniform, that hiding, and that emotional turmoil went on for much of that year. Lots of it is still a blur, and I don't have many photos to make up for my lack of memory.

But I won't ever forget the first person I met with alopecia.

In true small town New Zealand fashion, my nana connected us through a friend of a friend. Her name is Rebecca, she's a mother and after a small bout of alopecia in her 20's, she fully lost her hair a decade later. But you could never tell, because she's got this incredible wig. We sat across from each other at the table. Me in my silly baker boy hat and her in her brown bob wig. We took our coverings off at the same time and talked for hours, understanding each other on a whole other level.

I looked into wigs for a short time after meeting Rebecca. My hats were flying off my head in the Wellington wind and it was scary. I could be entitled to $2300 from the government to buy a wig. But it wouldn't be enough, and my family and I talked about how we might cough up and buy a $4000 one. Luckily in a way for me, I ran my hands through my head one day after and felt tiny sprouts of regrowth and decided to wait it out a bit.

'Not just hair'

Alopecia is coined quite commonly as a cosmetic issue, because aside from your body attacking the hair and making it fall out, your insides are business as usual. When my doctor told me it was "just hair" I felt a dagger inside of my stomach. I felt invalidated and small and more lost than before.

Because it's not just hair. Hair is how you express yourself, it's one of the first things people see and take notice of, it's what can make a good day a good day. Hair is an extension you, and if you've had that choice taken away from you it can knock your self esteem. Many of us that have or have had alopecia can tell you the ways it wrangles with your mental health. My anxiety shot through the roof and looking back on it, I was definitely depressed too.

The Ministry of Health doesn't keep record of how many people have alopecia. It could be in the low thousands, definitely in the hundreds. Globally, 2 percent of the population will experience alopecia at some point in their lives. There has also been a notable trend of people losing their hair amid the pandemic.

As I highlighted this week, the subsidy hasn't been updated in more than 20 years and barely covers it for people who have no hair full time, and need a new wig every couple of years.

I've watched in the shadows as my alopecia friends desperately try find affordable solutions that don't look silly - like a cheap wig which looks exactly that… a wig. Either with a cheap wig, or half a head of hair, you stick out like a sore thumb and people stare. It's the human condition, but it's exhausting when you're the subject to the curiosity, and sometimes bad jokes.

When that silly Oscars moment happened and the GI Jane joke came about, I winced and remembered the bouncer who snarked at my ID photo and told me I shouldn't have cut my hair. He didn't know that I had only just grown it back and I still hated how short it was.

But when the Google searches for alopecia shot up tenfold, we quietly celebrated in our online groups. People were starting to notice us, and we were starting to feel understood.

Many people with alopecia just want to be heard and supported, not just seen. Because being seen can be the most terrifying thing in the world.

Wigs can help people feel normal. Wigs that are custom made to someone's bald head, made with human hair, are sturdy and look the real deal make way for confidence to come back in. I've watched peoples faces light up when they take their first selfie with their new hair, that they've likely saved up for on top of the subsidy. Blending back in is the sweetest of victories.

It's about choice, and it's about empowerment. Not every person with alopecia wants a hair piece or will wear theirs full time. But the people I've met without hair tell me the same thing - having the option makes them feel more confident. Even years and years after losing your hair, one can have bad days and it's usually those days they want their wig.

I never got one because my hair grew back - very fast. With every inch longer it grew I felt pieces of myself coming back together, and then some. I'm grateful and cautious. It's more likely than not that my hair will fall out again, maybe for good. I'm trying to be ok with that. Last year I got a couple of bald patches and it reminded me that alopecia is still a stain on my self esteem.

Those people out there who have alopecia and are living every day what I did for a year - they are brave.

They've watched their hair fall to the ground and they've had the courage to pick themselves back together again. They've been strong enough to go to work the morning after crying themselves to sleep. They've bravely stuck out in a crowd even on the days they've desperately wanted to blend back in.

Those brave people deserve better support.