'An ex colleague said my baldness 'sickened' and 'offended' him' - Lady Alopecia on how she got her confidence back
From the bald girl to Lady Alopecia, I'm now comfortable in my own skin and in my own identity, writes Emma Sothern
'Growing up, my hair was my calling card.
In the midst of general fawning from my mum's friends, they'd always exclaim in wonder over my auburn curls. Lots of randomers; lots of hair tousling.
Please log in or register with Independent.ie for free access to this article.
Strangely enough, these displays of follicle affection didn't make me value my hair - in fact, I hated how unruly it was - but it did make me believe that it was a key part of my identity.
So when I was 10, and felt a coin-sized bald patch at the back of my head, I was a little alarmed. That was the start of my alopecia, which I'd have for the next 22 years (and counting). It would form my new identity: the bald girl who'd grow up to become Lady Alopecia.
BTW: alopecia is an autoimmune condition (I don't like the word 'disease' - it's not contagious and you can't catch my bald). It's fairly common, affecting 2pc of Ireland's population, and one in five women in a British survey.
Basically, the immune system accidentally attacks healthy hair follicles. These shrink in retaliation, stopping the body's natural hair regrowth cycle.
The result? Widespread bald patches (alopecia areata), total hair loss (alopecia totalis) or complete bodily hair loss (alopecia universalis).
Alopecia isn't life-threatening… but it is serious, with major repercussions for mental health.
Early patchy years…
I wasn't too affected by that first patch - my mind was on other things because my mum had just lost her long battle with lupus (another autoimmune condition) and died at 49, a month before my 11th birthday.
Clearly, the loss of my hair wasn't my number-one concern. All I could see was the loss of her.
But a few years later, when my hairline started receding from the base of my neck, I took notice.
In boarding school, a place with little to no privacy, hiding alopecia was tough. I became racked with anxiety, low-self esteem and body-image issues. (Like any teenage girl. Just balder.)
The most frustrating thing? I didn't know what had caused my condition, what could cure it, or how long it would stick around. Countless GPs, dermatologists and trichologists (hair doctors) didn't know. Nowadays, alopecia is linked to stress, hormones, genetics and environmental factors.
There weren't any understandable online resources I could turn to. And this was before smartphones or social media, where I might've found a community, some support, some answers.
So I began the long journey of trying to fix myself.
I'd spend Saturdays getting painful steroid injections into my scalp. They made me dizzy, gave me headaches and left me with paper-thin skin. But, hey, at least they worked! And when you're 16, desperate to fit in, you'll do anything to avoid standing out.
By 24, I had a full head of hair.
I was living with Andy, the love of my life. Things were great, so one day I was shocked to find a patch on the back of my head. And over the next few weeks, I watched my auburn curls fall out in clumps.
Losing so much of my hair then was like another bereavement. It was such an integral part of me, I didn't know what to do without it or who I was without it. And I relived this loss every day; staring back at me from the shower drain, my pillow, my hands…
At first, I hid behind extensions. Every morning, Andy would take a section and some tape to piece me back together. Later, I bought a wig. It looked like my old hair (and would take hours to style it that way), but I felt like a fraud. People would compliment my hair, just like when I was younger, but this time, I'd feel unbelievable guilt, knowing that it wasn't mine.
So my wig-wearing confidence was diluted by anxiety. I'd worry constantly about it slipping - and since I had barely any hair for the combs to hold, they'd dig painfully into my scalp, causing jagged scratches and thumping headaches. But the relief I'd feel at the end of the day!
I'd come home to Andy and the first thing I'd do would be to take off my wig, like others slip out of high heels. In the mirror, there'd be a totally different person looking back at me. It was both jarring and liberating.
I eventually realised how much I loved those moments, when I could ditch the cover-up. And then I thought, what if that was just my look? What if I could walk around bald, all the time?
My new, bald slate…
So, one evening, using a pair of crappy Boots clippers, Andy shaved my head.
I thought I'd feel liberated, like when I removed the wig, but when I saw my reflection, I was horrified. For one, my remaining hair had been masking a giant bump on my head, now exposed for all to see. For another, its stubble remained - so my head wasn't smooth and shiny, but criss-crossed by an ugly, spidery shadow.
I didn't look strong and empowered. I looked sick - and I'd no idea who I was any more. Alopecia makes you question your identity.
If you've never had it, you might be thinking: 'But it's just hair, what's the big deal?' The thing is, it's not just about aesthetics. As women, we associate femininity and sexuality with long hair. And without it - well, it's hard to feel like a woman.
Having long locks to toss over my shoulder or to fuss with before a night out isn't something I thought I'd miss… but I do. Sometimes, I'll see a really pretty dress and try it on and… nope. Still look like an egg.
I feel less feminine. Even with my colourful skirts and headscarves. And even when people tell me that my Mohawk is "fierce"... it's really kind, but I still don't feel beautiful. Or womanly. Maybe that's why I'm so obsessed with glitter and fancy dress -they let me be someone else for a while. (That's me at my lowest. Which, fortunately, isn't often.)
Most of the time, I'm proud to have alopecia. Going bald was the best thing I've ever done!
The support of my friends and family (and most recently, some beautiful alopecians on Instagram) has given me a confidence I never had with my wig. Or even with my old hair.
And despite the less positive experiences - having my head licked by a drunk guy in Myanmar, being told by a former colleague that my baldness "sickened" and "offended" him, hearing "f**k you, you dyke!" from a group of teenagers when I walked past, all dolled up, for my Christmas party - I'm still grateful to have the condition.
Because stripped back, baring all, I'm the happiest I've ever been. I like how I look, most of the time. And I just love how I feel - lighter, freer and unburdened by what people think of me. Comfortable in my own skin, in my own identity.
People might know me as 'the bald girl' - but I know there's more to me than hair. (Thankfully.)
Why I stopped seeking a cure
I've visited doctors and alternative healers all over the world. I've had some pretty weird experiences, from blood-cleansing rituals to electroshock acupuncture. I've tried countless diets and the truckload of supplements that go with them.
Some treatments worked - four years ago, all my hair grew back - but none lasted long. Even as one part grew, a shiny new spot would appear elsewhere. It became a constant game of peek-a-patch that I grew tired of playing.
I no longer chase a 'miracle cure'. Of course, I'll stay open-minded if a new treatment arrives, but I won't waste my time or energy searching for one.
I've stopped giving alopecia so much power; I've started rocking it with pride instead.
I set up Lady Alopecia to help others do the same.
The site includes my experiences with alopecia - good and bad - plus product reviews, nutritional advice, tips for natural remedies and tools for coping with anxiety. It explores alopecia in a more accessible way.
I believe that hair loss doesn't have to be such a terrible loss.
We can use it as an opportunity; a chance to connect with that incredible strength inside of us. To realise who we truly are. And to enjoy the adventures of alopecia."
Check out Lady Alopecia's blog here.
Health & Living