Hair. I’ve had a funny old relationship with it over the past 12 years. Dating back to those first two bald patches discovered on a holiday in Mexico in 2007, to 2010 when practically every hair fell out of my head and body in the space of five months (except my underarm hair because I’m convinced that someone somewhere is having a good laugh at my expense).

Nearly two years of total baldness followed which was difficult to adjust to but I fairly quickly got to grips with my hairlessness. I didn’t love it but I became comfortable with my appearance. It felt final and as much as I really wanted it to grow back, I didn’t think I’d see my hair again. I had come to accept that I’d be totally bald forever…but my body had other ideas.

Over the past 7 years, I’ve experienced different degrees of regrowth. In the months that followed my hair falling out, I wished and hoped for my hair to return. But that age old expression ‘be careful what you wish for’ could not have been more apt. My hair started to return. But it wasn’t the hair I’d longed for. It first started to come through as patchy fluff; first white and then the pigment returned. I was then treated to extremely dark, coarse and wiry regrowth. But not all over my scalp. Nope, that would be too helpful. For years I experienced patchy regrowth ranging from 20% to 80% coverage. In the summer of 2015 it looked like I was getting a full head of hair back (yippee!), with the patches closing up to the size of 5p pieces, only for it to start shedding rapidly a week before what would have been my first trip to a hairdresser in over 5 years.

The loss of ‘what might have been’ in 2015 was painful. I was surprised at just how painful it was. By that point, I had been volunteering for Alopecia UK for a while; replying to support emails, leading group meetings in Leeds, volunteering at events. I’d regularly given out advice about the unpredictable nature of alopecia areata; how not to build up hopes too much about hair returning, taking one day at a time, being prepared for the fact that any regrowth might fall out again etc. And yet, when all my regrowth started to fall out again I was devastated. Absolutely gutted. Even though it went against the advice I would give out, I’d allowed myself to (very quickly) begin to dream of my beautiful pixie hair cut I was going to totally rock! I’d daydreamed about then growing it out into stylish little bob. And then from there, I had visions of growing it longer and being able to tie it up in different styles. And all those hopes and dreams might sound totally insignificant if compared to aspirations to start a new life in another country or to climb Everest or to buy a huge mansion in the country with a hundred rescue dogs, living out the rest of your days with your new canine friends (ok, so that last one might have been a bit too specific..) But if you’ve experienced hair loss, you’re likely to relate to those hopes and dreams. Something is taken from us without our consent, often quite suddenly and unexpectedly. It has a profound impact on our appearance and this can have a knock-on impact on all sorts of things. It’s only natural that we might dream of the day it returns.

And after that regrowth shedding of 2015, I really didn’t want to get burned again. I really didn’t. But alopecia is a cruel old beast. It hadn’t finished playing with me yet. After another few years of ‘neither use nor ornament’ regrowth, in Autumn 2018, the patches started to fill in again. Interesting I thought, I’ll quit with the clippers and see what happens. What happened was the patches continued to shrink and my hair continued to grow. Weeks and then months (nearly four) went by. And with it came the many comments and questions (and excitement!) from others around me. “Wow, look at all that hair”, “What are you doing differently?”, “Congratulations!” (always find that one a bit weird to be honest!), “You look fabulous!”, “Your hair looks great”. And with these comments, my own hopes continued to build…

It really did feel like this time was different. As though this was the time it was all going to change forever. But why did I allow these thoughts to creep in again?! Why was I duped again by my own body? It started to shed again. And again, I felt upset, disappointed but most of all annoyed with myself for allowing myself to dream of that ‘full head of hair’.

I work for a national alopecia charity! I should be well-versed in the emotional rollercoaster that is living with a condition that you cannot control or change. But it bit me, again. It hurt me, again. And ridiculously, I also felt like I’d let others down. Family and friends who seemed excited to see my hair return. Ridiculous as I say but these feelings occur nonetheless.

It can be blummin' challenging having alopecia of any kind. The unpredictability and uncertainty of alopecia areata and the regrowth it can bring (and then take away) is hard. It really is. It would be much easier to say now “Right, that’s it. No more! I choose to have a buzzcut for the rest of my days regardless of whether I have patches or not”. My choice. Not pesky alopecia’s. My brain will be the one in control and not my ridiculous immune system. Easier to agree to never allow it to grow again.

But then it’s hard to ignore the thoughts of ‘But what if this time it stays…’