Lady Alopecia (aka Emma)’s story

Lady Alopecia (aka Emma)’s story

Alopecia and I have somewhat of a love/hate relationship. Don’t get me wrong – I’m not crazy enough to love having the condition – but it’s taught me so much and led me into such amazing experiences that I have to appreciate it a little. And anyway, we’ve been through so much together that I can’t help but have a teensy bit of affection towards my old pal. After all, it’s stuck by me for most of my life…

The first patch started when I was 10.

 Well, apparently I’d a tiny patch on the back of my head as a toddler but obviously I don’t remember that! Plus, I didn’t have any eyelashes on the bottom of my left eye until I was a teenager. My arms were always suspiciously smooth, too. Fascinated by these differences whilst simultaneously unfazed – as kids often are – I went about my business of being a child without giving my hairlessness any further thought.

 In terms of hair on my head, I had a lot of it. And it was always my trademark, even as a tottering two-year-old. Apparently, I drew compliments wherever I went – and especially if our family went abroad – because a headful of auburn curls will always stand out (other Irish redheads will know what I mean!) As the youngest of 5 children, and the odd one out in hair colour, my sisters would tease me that my real parents were birds, that one day they’d come and collect me and that my hair would fall out.

Well, they were right about one thing!

 That first patch appeared soon after my mum died, from an autoimmune condition called Lupus. Too young to understand fully what was happening, I guess my body responded to the internalized grief in the only way it knew how: by attacking itself. But my mind was on other things and I don’t remember being overly emotional about the loss of a few hairs at that stage; just about the loss of her.

My alopecia didn’t flare up again until I was in 5th year at boarding school, and going through a pretty hard time. (Girls can be pretty cruel, right?!) This time, it didn’t appear as a patch but more as a kind of receding, around the nape of my neck, behind my ears and at my temples. Basically I was cultivating a ‘tonsure’ (a monk haircut) without realising it. Trendy.

Obviously, this was a nightmare occurrence for a 17-year-old girl. I got away with it most of the time, simply by wearing my hair down and using clips to cover the telltale flashes of skin…but I couldn’t cover them all the time. And every gust of wind would send me into a blind panic – which, living in Ireland, meant that I was quite panicked a lot of the time.

I started visiting dermatologists, trichologists, even a couple of disastrous visits to a psychologist. The only thing that seemed to work was corticosteroid injections, which I began to depend on from a fairly young age and which I later found out are pretty toxic, especially if you use them too often. (Now I wouldn’t touch them but the damage has probably already been done – the skin above my forehead is paper thin).

Anyway, it was all quite manageable.

 I dealt with it. And people were none the wiser (or so I told myself).

 Fast-forward 7 years, a relatively patch-free time, and I’d just met Andy, my now-fiancé, while volunteering in Kenya. We moved in together, back in Edinburgh where I was doing my Masters, and things were going great. But for some reason, that receding decided to kick in again – and then it grew. And grew. And grew. Over the space of a few months I lost all but the top part of my hair; so the headbands upon which I’d come to rely no longer covered the skin beneath.

So I turned to glue-on extensions, and later a full (and veeery expensive) wig for help. The extensions only served to rip out my remaining hair; the wig proved handy for about a year until I got sick of spending nearly 2 hours washing, drying and curling the thing to look like my natural hair. It also got really itchy and uncomfortable at times and, since I didn’t have much hair to hold it in place, the combs would cut painfully into my skin.

 This all coincided with a bit of an existential crisis... so that winter I quit my job as an advertising copywriter and started making plans to go to Indonesia for 2 months – my first solo trip and probably the longest I’d ever be by myself.

It felt like a new start – and I wanted a clean slate for my head.

 The night before I left, Andy shaved my head bare. I thought I’d feel free, excited and empowered when I looked in the mirror afterwards: but really, I felt horrified. The razor hadn’t stripped me off all hair, as I’d hoped – but a shadowy stubble remained, crisscrossing around my scalp like something out of Spiderman. So it didn’t look like a cool, edgy, look. Rather, I just looked weird. And sick. And...very bumpy-headed. How had I never noticed how bumpy my head was before?!

 It was all a bit much. I cried and cried and wanted to back out of the whole trip – but at the same time, I knew I couldn’t stay home. Not with the state I was in, anyway! So the next morning, I got on a plane (a colourful headscarf tied around my head, like some kind of security blanket) and off I went.

 Over the next couple of months, I learned a lot. About yoga, meditation and mindfulness. About healers, and the gifts they possess that I can respect but never understand. And about my own capacity to deal with jeers, stares and outright laughter. Most of the time, they came from a good place – people were just curious, some were even quite complimentary – but it still meant that I was a constant source of entertainment. That I couldn’t ever just blend in. And that’s something I’ve pretty much had to get used to ever since.

Back at home, I found the courage to ditch the headscarf, to write a “coming out” post about my alopecia and to share it on Facebook. The response I got was incredible. 99% of people had no idea I’d been wearing a wig or that I was hiding something with my headbands...and – shock horror – they weren’t angry to have been duped! They were so supportive, and understanding, and...well...just lovely. They helped me to see that there’s more to me than hair, that beauty is not just what we look like, etc – stuff I had heard a million times but had never really sunk in until I was ready for it to do so.

And that’s when alopecia and I finally began to have a “healthy” relationship (if that’s even possible). Basically, I acknowledged that it might continue to stick around and it decided to make me less stressed about it.

The funny thing was, as soon as I began to accept my alopecia and not hide from it, my hair grew back! Soon after I returned from my trip, the fuzz crept into patches that I’d thought incapable of sprouting forth. In just a couple of months, I finally had the kind of “edgy” look I’d sought – still with short hair but with the stubble evened out, like it was a style choice. I even had to go for a haircut: my first one in nearly 10 years.

But, alas, that good thing had to come to an end.

 I’d been enjoying my hair-filled head for around 2 months when a coin-sized patch appeared at the back. Which made me worry. Which made more hair fall out. Which made me worry more. (Fellow alopecians will know how frustrating this vicious circle is!)

 A few months later and I was back to where I was before my travels: with a small clump of hair topping my crown, shiny bald patches covering the rest. This time, I didn’t go for the full chop but visited a hairdresser friend, got her to even out what she could and wore it as a mohawk instead.

That was 3 years ago and, hairwise, not a lot has changed since. Sometimes the clump of hair gets really thin until there’s not much left at all to secure with clips – other times I’ve got a full-on mullet to contend with. Right now, the hair’s looking a good bit healthier and I’ve actually got

some volume going on...but still, not a peep from those patches. At times, fuzz will appear and get my hopes up…and then, gotcha!...they’ll fade away again.

 I still go for treatments when I can (albeit of a more holistic nature than steroids). In my current home of Hoi An, Vietnam, I go for a strange form of acupuncture weekly, that involves what I can only describe as some kind of electric shock therapy. I also take enough supplements to keep my local health food shop in business. And I’m always open to hearing about new nutritional advice, or anything I can do to boost my immune system in a natural way (I’m done with the chemical stuff).

The difference between me now and a few years ago?

Now I’ve accepted that my alopecia might never tire of me. And that’s ok. I’m still open to trying new treatments, but I’m not going to obsess over them. Instead, I’ve tried to shift my focus from healing myself to helping others. That’s why I set up my website and why I’d love to be an active part of the alopecia community, spreading awareness about living hairfree and being proud to be bald!

I didn’t have any helpful resources to turn to when I was growing up with alopecia. Luckily, nowadays, that’s changed. So many brave people are opening up about the condition and thanks to social media, we can all see just how beautiful they are. But regardless, alopecia can be a scary, frustrating and isolating thing to go through. And even now, it catches me off-guard – like I’ll suddenly have a day where I just want to have no pointing, no staring.

So that’s where the love/hate relationship comes from. I love how strong alopecia has made me, the lessons it has taught me...but I hate what it did to my confidence back then, what it still does to those who haven’t quite reached acceptance yet.

To those people I’d say keep going: you’re more beautiful than you could imagine. And share your own story if you can...sharing mine has certainly helped me!