Don't panic!

I vividly remember finding my first two small bald patches in October 2007. I was 24 years old and was on holiday in Mexico with my boyfriend. It was SUPER hot and I had tied my long hair back in pigtails to keep my hair off the back of my neck. Once i'd tied my hair back, my boyfriend spotted two small 10p-sized bald patches at the back of my scalp. He guided my hand up to them and I remember feeling shocked at the lack of hair. I tried my best not to panic, after all this was Day 2 of a fortnight's holiday. I did my best to put it to the back of my mind but I found it hard to forget these two little patches for the rest of my trip. 

When I returned home, I made an appointment to see my GP. She was very reassuring. She explained it was a condition called 'Alopecia Areata' and that she could already see some sign of the hair returning to the patches. I was told that the majority of people with Alopecia Areata experience regrowth and that I shouldn't panic or worry. The chances were that the patches would fill in and that would be the end of it. Sure enough, a few months later, my hair grew back and I thought nothing more about alopecia. 


Three years later, my hair started falling out in large clumps. It was February 2010. I tried not to panic but this time it was different. It was coming out much faster. Blood tests were done but revealed nothing unusual. My hair started to fall out from the front this time. Within a couple of months, I had a big patch at the front of my head. I started to wear headbands to cover up. It continued to fall out. I confided in a friend and ex-colleague that I thought I was about to lose all my hair. He told me that seemed very unlikely! And yet the shedding continued. It was awful. Everyday I was sweeping masses of hair from my bed and even my desk at work. I was feeling low, self-conscious and worried that it meant there was something seriously wrong with me.

By July of the same year, I had so little hair left I made the decision to shave off the remainder of my hair. By the time of that first headshave, there was probably only about 20% of my hair left. It was so thin and straggly. That first headshave was a mix of emotions. Partly relieved (no more having to clear hair from my pillow!) and partly devastated (I was suddenly bald and it was hard to come to grips with my new appearance). Family and friends gave me lovely compliments and told me it suited me. I remained unconvinced.

A week or so later, my eyebrows and eyelashes fell out too, along with the majority of my body hair (my underarm hair never fell out!). With the loss of my brows and lashes, I felt like my face had been completely wiped out. I didn't recognise the person staring back at me in the mirror.

I continued to go to work and really tried my best to continue to function as normal. But deep down I was broken. Absolutely broken. Everyone was so lovely around me but I was really struggling. It was so hard (and exhausting) to put on a brave face but I didn't want to make my family and friends miserable too. I'd mask how I was really feeling with smiles and jokes. Unfortunately, I found my doctors to be pretty unhelpful. No treatments were offered to me other than one steroid cream that didn't work. And when I asked for counselling, I was told there was an 18 month waiting list and that my hair would 'probably have grown back by then'. Even though I was surrounded by supportive family and friends, I felt completely alone. I didn't think anyone understood. There was one particularly dark day that I thought to myself that alopecia had completely ruined my life. It was a Saturday. And I couldn't get out of bed. I stayed in bed all day feeling thoroughly upset and sorry for myself. I cried most of the day. And that same day, feeling all cried out, I had almost an epiphany. It was in that moment that I thought that nobody else was going to be able to turn this around other than me. 

The Turning Point

I joined Alopecia UK's online forum and started to talk to others with alopecia. It helped a little but I didn't feel like these anonymous online voices were real. And then I discovered an event was taking place in May 2012. A photographer, Daniel Regan, was exhibiting his portraits of people with alopecia and Alopecia UK invited people with alopecia along. I travelled down to London on my own and was both nervous and excited. When I arrived at the studio, I sat down and introduced myself to another Amy. I pointed out one of the portraits and said how beautiful I thought it was. She replied with 'You do realise that's me?'. I hadn't! Meeting Amy I realised how amazing wigs could be - I hadn't clocked the long-haired woman I was sat with was someone with alopecia. And then Sue walked in. And that's when I had another lightbulb moment. As soon as I saw Sue walk in, I instantly felt a wave of relief come over me. I can't describe it any other way. Sue looked cool, confident, radiant, bald head, big earrings. And in that moment, I just thought 'I got this'. I know that sounds massively cheesy and lame but it's true. I then met a load of other people with alopecia too and we chatted about all sorts of stuff - wigs, headscarves, eyebrows, doctors, public reactions - and I knew after that afternoon that life was going to be better. And it was. 

Alopecia UK and Me

One of the people I met at that first event in London was my colleague Jen Chambers. We kept in touch and met later that year. She saw something in me (without putting words in her mouth i'd say 'bags of enthusiasm' and a shared 'can-do attitude') and she got me more involved with volunteering for the charity. I loved Alopecia UK at once and was keen to do more. Jen and I became part of the 2nd generation team at Alopecia UK and have both put a lot (sweat, blood and tears!) into this small charity to get it to a point whereby we have a full-time staff team, something we could only dream of when we first met. I am very proud of what we have managed to achieve. I LOVE my job and this charity. I can vouch personally for the positive impact that peer support has had on me. Meeting others with alopecia turned everything around for me and I am delighted when I see the same happen for others too. It's not for everyone but for many the peer support offered by Alopecia UK can be invaluable. 

Where is my head at now?

I'm comfortable with my alopecia these days but personally I would still love for my hair to make a full return one day. Although, I think that would take some getting used to should it actually happen! Eighteen months into my hair loss a dermatologist informed me, with some authority, that I would never have any regrowth. Just a few weeks later (as if to prove him wrong!), my hair started to grow back (which goes to show, you never know for sure with alopecia areata). In the past 8 years, i've had different degrees of patchy regrowth and am very much a 'Patchy Headed Girl'. 

I occasionally have days when I have a brief 'Why did this have to happen to me?' moment. Usually when i've just seen someone with fabulous hair or on a day when I want nothing more than just to blend in. But on the whole, most days I am happy to be my patchy headed self. It brings me the opportunity to educate others and raise awareness on a regular basis. 

At the time of my hair falling out, it felt like an enormous, insurmountable thing. But time is a great healer. As is knowing that i'm part of a fantastic community who offer support when it's needed. And at the end of the day, I am much more than the hair on my head. It's just a small part of me. 

And my hair loss just means there is more of me to cover in face paint and glitter... ;-)