The Best Things About Alopecia

I debated for a while whether to write about having Alopecia Universalis, and how to write about it.  It opens up something quite personal to me, I don't see myself as a victim, and only want to write to try to help other people who perhaps are going through something themselves and need a little confidence booster.

What happened?

All of my hair fell out around my tenth birthday, being thirty-four now, I don't really think its going to come back.  And that doesn't really bother me, because I don't really think about it much at all.  At the time, my family around me were shocked and wanted to find a cure, my friends at school were sad for me, but they did amazing things like a sponsored walk to raise money for it, before there was really a huge established charity for Alopecia, before the internet, before crowdfunding, and the support network was a hand-typed newsletter by a woman who had hairloss too.  

My mum and I tried the NHS wigs, but somehow I went from having my long dark flowing mane which fell out, to short, curly and slightly greying wig options, that scratched to the point of insanity.  So I was allowed to adjust, and chose to wear baseball caps as they were comfortable, and I guess I could hide a little under that brim. People mistook me for a boy instead of thinking I had cancer.  People have thought I've got a major illness many, many times. It happens, and I brush it off. I'm lucky I haven't had a major illness.  My mum had breast cancer and I wouldn't wish that on anyone.  Most people don't mean to be cruel with their comments.

If you are being bullied right now, because of your Alopecia, I am truly sorry. Here is a virtual hug from someone who knows.  It's easy enough to type 'you need to learn to let it go', but you really do, because your life isn't meant to be full of sadness because of your hairloss. Life with Alopecia isn't awful every minute of every day, it just has some bad moments. Your track record of getting through these moments so far is 100%, so keep doing that.

Own it

It was difficult being a teenager with Alopecia.  But hey, let's have a think about it, it is difficult being a teenager full stop, right? Everyone, and I mean everyone, goes through a time when they worry about the way they look. I remember school photo days were uncomfortable, and note my word choice, school photo days were not the end of the world, they were just a bit uncomfortable, all the other girls preening and fluffing and worrying about the way they looked made me feel a bit crappy because I couldn't join in with the preening.  Preening was something I couldn't do, I looked pretty much the same every day. Nowadays I'm pretty glad I don't have to preen, if I counted up the hours I've saved over the twenty-something years I've had Alopecia, I've saved myself an awful lot of time that I've spent on doing far more fun things instead.

I moved on from baseball caps to velvet floppy hats as they covered more of my head, I wore glasses as they framed my eyes where eyebrows should be.  This was before pencilled in eyebrows were fashionable. The hats were a pain, too hot in the summer, they blew off in the slightest gust of wind.  Brief moments that embarrassed me, and I didn't want that anymore so I moved onto bandannas instead. I stuck with them for about ten years or so. I became proud of looking like a pirate, my outside reflected my inside, brave and fearless.

I looked the world right in the eye and said, 'This is me, take it or leave it'. And through that, it became more and more apparent that my Alopecia mattered less to people than I ever thought it did. 

Human beings are all different, some people relish their differences, others hide because of them. I chose to get on with living the rest of my life and finding awesome things to do because hairloss was a small part of my life and it actually makes things a whole lot easier.

I hit a point in my life when I wanted to know what I would look like with hair, before I got that old that if it does grow back its going to come in grey.  So I went back to the NHS, went to a fantastic Hairdressers called A and A Studios in Edinburgh, who put me at ease in their chair and they told me, that since I did all that growing into an adult, times had changed and now, wigs were awesome. I could have one for every day of the week, every mood, every costume change.  I trusted them, and they introduced me to Hair Society Wigs, by Ellen Wille.  They have this gel lining around the forehead rather than netting, which not only makes them stay in place without wig tape, but makes them look realistic too.  If I could have those wigs sent back in time to that ten year old girl maybe I might have, but she became pretty darn strong and achieved some pretty big things in her life because of who she was, so maybe I wouldn't.  Who knows?

I wear hair for work, and bandannas at home, most of the time and a bit of eyeliner and eye shadow round my eyes so I don't feel like a washed out Panda. I just do what feels comfortable for me.

Did I mention I never have to shave my legs? I'll leave that one right there. Never have to shave. Yeah.

what would I recommend?

Bandannas, comfortable, warm and great for running in, breathable for sports, no suffering on hot days, hurrah, and I lowered mine over my eyebrows so I didn't have to worry about them either.  The best ones I've found, were through my mum, during her chemotherapy, the Macmillan Cancer Care unit at the local hospital gave her some 100% cotton bandannas for her hair loss, and she gave them to me, along with the link to where to get them online.  These are perfect, available in lots of colours, last for a long time, and a great size for folding and tying.  So here it is for you, click here for ultra comfortable bandannas, I love the mint green and pink ones.  And they're fair-trade too, even better.

Ellen Wille wigs, or ones like them, with that comfortable gel lining (click here to see them).  I've never tried human hair wigs yet, I might one day.  I stick with these as they're available on the NHS (thank you wonderful NHS) and I know there's other great wigs out there as A and A found me an utterly fantastic one for my wedding, but I don't go out of my way to buy them.

Eyebrow Tattoos from a reputable beautician.  I got mine done with temporary ink, lasted about two years.  I couldn't draw them naturally and they melted off, so tattoos took all the hassle out of that. Nowadays its a fashion to have un-natural ones anyway. What can I say, anything for an easy life, I got them permanently inked on while drunk on a girls holiday. Yes it hurt a little, but pain is temporary, and they were worth it. If they turn green in a few years time I'll figure it out then.

Get Inspired There are incredibly confident people out there, so take some confidence tips from them, not only in the world of the hairless people, where we have the likes of Gail Porter, Matt Lucas (read his article here) and this guy who free dives in the Arctic and can hold his breath longer than anyone championing our cause. There's great inspirers throughout the reaches of life.  I like Life Coaches, I listen to Brooke Castillo's free podcasts on Youtube, she's great motivation.

Not Worrying don't let hairloss weigh heavy in your heart. Please. Life has so much more to offer, and there are so many options out there nowadays to make you look however you want, to give you the most confidence.  If its just happened, I can imagine its a shock, but you'll get through it, and find your own ways of adjusting.  I learned to laugh at it too, I used to have a t-shirt which said 'I sold my hair to medical science' it was one of my favourites, check out here for some humourous tees. If you own it, its no longer a weak point.  

Feel free to drop me a message or add a comment below and lots of love to you, you're doing great.