Josie's Story

My Alopecia Story: Making myself feel great!

Hi everyone! My name’s Josie and I’m a Welsh/Sri Lankan flamenco/contemporary now with alopecia! 😉 I’m going to try and not let this be a super-long story about my personal journey with alopecia. There isn’t actually that much to tell anyway – I have not had alopecia my whole life; it first began falling out at the beginning of December 2018, just a few days before my 25th birthday, and I have since been diagnosed with alopecia universalis (AU), have shaved off what little head hair I had remaining and am waiting for the remainder of my eyebrows and eyelashes to fall out.

Obviously this was a bit of a shock at first! I always used to have LOADS OF THICK, DARK, LONG and extremely DURABLE HAIR. So the last thing I was expecting was for all of it to suddenly fall out within the space of 10 weeks. I consider myself to be a pretty tough, resilient person, but I will certainly admit that the first few days after my AU diagnosis were hard. It was so much to assimilate in such a short space of time and I found myself grieving for my hair.

But I knew that I would start to feel better as soon as I started to figure out what my “solutions” (i.e. coping mechanisms) would be. I thought I’d share the ways in which I dealt with my alopecia with you guys, in case you find any of what I did interesting or helpful …

Firstly SHARING. I knew almost right from the start that I didn’t want to hide this. I felt strongly that I would rather have all my friends know (both current and future friends whom I’ve yet to meet). I didn’t want to be worrying about trying to hide my alopecia and scared that someone might notice at any moment, and I also felt very nervous about the idea of having to “reveal” my alopecia to anyone I got close to. I decided that if anyone had a problem with my alopecia then that would be their problem, not mine.

Of course, not a single one of my friends has reacted negatively AT ALL. In fact, it’s been entirely the opposite. An absolute fountain of warmth, support, admiration and love has been what I have been receiving almost daily since I put a big Facebook post up explaining about my condition, and I sometimes even get kind messages and moral support from strangers.

Boosted by the initial success but I didn’t stop at Facebook. I made a video of the day I shaved my head and uploaded it to YouTube; you can see the full video here if you’re interested: https://www.youtube.com/watch?v=1EvsGI_DydU I also wrote to my local newspaper and they published an article about my experience with alopecia, an article which was picked up on by a journalist who contacted me for a quick phone interview following which I awoke next day to find that my story had made it on to the BBC News! https://www.bbc.com/news/uk-wales-47490318

Now I realise that this is taking sharing the story to the extreme. Not everyone wants their new bald head to appear on national news just a week after they’ve shaved their hair off. But I felt liberated. Perhaps it’s to do with my job – i.e. being a performer I’m used to having people’s attention on me – or perhaps it’s just the way I am, but I’ve been enjoying being able to talk about this with people. A lot of the time they’re more embarrassed or shy than me, and I can see they want to talk to me about it but they’re worried of upsetting me or whether it would be inappropriate. But once I crack a bald joke the conversation gets underway and people are fascinated. There’s so little known about alopecia and people are endlessly interested and supportive.

The second thing I decided to do, once I’d been given my AU diagnosis but still had some hair remaining was to get a photoshoot done with said remaining hair so I would have something to look back on and remember my old self by, before closing that chapter and starting anew without hair. This was a wonderfully cathartic process and was very important for me in accepting my alopecia and acknowledging the possibility that this may be a permanent change. I suppose I thought of it as a mini-funeral for my hair.

The third thing I decided to do was to get a huge henna crown done on my head after I lost my hair. I’d seen this a couple of times online while researching alopecia and general hair loss during the early stages of my own hair loss. The designs I saw looked so beautiful and it seemed like it would be a smoother transition into the world of having a bald head rather than going straight from hair to naked skin; having my head covered with henna art and having that gradually fade away over the course of a couple of weeks.

The final thing I decided to add to my alopecia journey was a mini-celebration-party the day I shaved my head. As I’ve previously said, sharing my story was such a key part of accepting what I was going through and feeling confident in myself. So rather than have my head-shaving turn into a sorrowful affair I used it as an excuse to have a party! We got some yummy food in and I even baked a cake and made homemade dairy-free ice cream for pudding, it was a great night.

Well that’s all I wanted to say really. If anyone wants to contact me further then please feel free! You can find my video on YouTube and at the end is an email address which I can be reached by. It just remains to leave a few passing thoughts which I repeat to myself if ever I need an extra boost …

This condition isn’t debilitating. It isn’t painful. It doesn’t stop me or anyone from doing any of the things we used to do. We’re now just more aerodynamic!

Hair loss is only a negative thing because in the Western world in which I grew up it’s “normal” for people, especially women, to have hair. But in other cultures many people shave their heads. Plus I’ve always thought of myself as a bit of a non-conformist anyway.

"This is my life, if I feel shitty my life will be shitty, if I feel good my life will be good". Essentially if I get really down about this the only person who’s going to end up losing out will be me, so I may as well just accept it as best I can and continue as I did before. Plus the less of a deal I make out of this the less others will too.

Peace and love folks! xoxoxo