When one of my colleagues said that she’d love me to include my own story as one of Alopecia UK’s ’20 Stories for 20 Years’, I figured some people in our community would be all too familiar with my story. After all, I have worked for Alopecia UK for many years and shared my story several times. However, I realised that although I have written lots of blog posts covering various topics, I’ve never published my alopecia story on AUK’s website. Over the years, I’ve shared aspects of my story in our private Facebook group, and I’ve even been featured in local and national press, but a lot of time has passed since then. 

My alopecia story begins in 2007 on a holiday to Mexico. Because the weather was so hot, I was wearing my hair in a different style (pigtails) and it was pointed out to me that I had a couple of small round bald patches, about the size of 50p pieces. I remember the shock of feeling the smoothness and total baldness of these two patches when my finger was guided to them. Given the patches were on the back of my head, and covered with long, thick, dark hair, I have no idea how long they had been there.

Looking back, these two small bald patches did cast a little cloud on this holiday. I remember worrying what they meant and what was wrong with me. As soon as I returned home, I booked an appointment with my GP. They explained that I had alopecia areata. A flash of panic went through my mind at the mention of ‘alopecia’. My only reference to alopecia was the lovely Scottish TV presenter Gail Porter who had lost her hair only a couple of years earlier and continued to feature prominently in the media. My GP was very reassuring and explained that it was rare for alopecia areata to progress to total hair loss, and that it was most likely that my patches would fill in.

And they did! Not long after that appointment, little hairs started to sprout on those patches and within a few months they were out of sight and out of mind. I honestly thought that was the end of it. A one-off. A blip. You might have already guessed, I was wrong.

In February 2010, my hair started to fall out in clumps. This was very different to the hair loss in 2007. Not the little round patches this time but more of a drastic shedding all over, and much worse at the front of my scalp. This time the GP seemed a bit more alarmed. I was given a steroid cream that didn’t appear to make any difference, still the hair fell out. Soon I had a large patch at the front of my scalp that I couldn’t cover with my remaining hair. So, I started to wear those expanding head bands, something between an Alice band and a bandana. After a colleague asked me if I was sporting a new ‘Steffi Graf look’ with the headband, I decided to tell my team what was happening. It was a relief to have a few people in the know.

A few weeks later, when I was extending that headband to its widest point, I decided to tell everyone in my office what was happening. I had wispy bits of hair covering a bald scalp underneath. I decided to shave the remaining bits off. I sent an office-wide email to explain that I had alopecia. I wish I’d kept the email so I could see exactly what I’d said but I kept it short. I remember saying that I didn’t want people jumping to conclusions and thinking I was undergoing chemotherapy. I didn’t want that misunderstanding. I also remember saying that I was struggling to come to terms with what was happening but that I didn’t want anyone walking on eggshells round me. If anyone had any questions, they could ask me. 

To get something positive out of something that felt incredibly difficult, I also asked family, friends and colleagues if they would sponsor me to shave my head. I knew that sponsored head shaves were a thing and I saw this as a 'when life gives you lemons' moment. (I ended up raising over £2k for a local good cause. I am pleased that I was able to help, but I also wish I had found Alopecia UK by this point as I could have raised much-needed funds for a charity so relevant to what was happening to me).

I asked an old school friend, who is a hairdresser, to shave my head. I went to her salon, after hours, and put on a brave face. I didn’t feel brave when I got home. I felt confused, shocked, frustrated, sad, and more than a little bit lost. How had this happened? How was I now staring in the mirror at a bald 27-year-old woman? It didn’t feel fair.

Within a couple of weeks of those wispy bits being shaved off, my eyebrows and eyelashes completely fell out too. I no longer looked like the same person in the mirror. I felt like I had been wiped out.

My lowest point followed shortly after. I was due to spend the day with my mum, go for lunch and do a little shopping, as we often do on a Saturday. I couldn’t get out of bed. I was just sobbing. I felt awful sending her away. But I didn’t want to face the world. My heart ached from feeling so bereft.  I didn’t want to see anyone or anyone to see me. I was exhausted at having to put on that brave face. I just wanted to hide. Whilst that day of sobbing alone in my room was the lowest point I’d ever reached, it also included a moment of enlightenment. I remember at about 6pm, as the August sun was still shining through the window blind, thinking to myself, ‘Nobody is going to fix this for you’. Looking back, it was an extremely lucid thought, as clear as the blue sky outside.

It was from that moment that I thought ‘I’ve just got to crack on with this’. It doesn’t mean that from that moment everything was easy, it wasn’t. But I think I needed to have that day to get some of the acute sadness I was feeling out of my system. From that moment, a bit of my fighting spirit came back. I knew with absolute certainty that I didn’t want this to beat me. I felt totally beaten on that day in August, but I was determined that I wouldn’t waste another day to alopecia. Especially not a beautiful sunny day.

In the months that followed, I got some permanent make up which put some eyebrows back on my face and boosted my confidence enormously (my ‘Two Lines On A Face’ blog post goes into my detail about this). I started chatting on Alopecia UK’s forum (the precursor to the charity’s popular private Facebook groups). I connected virtually with people from all over the UK who understood how I was feeling. It felt like a revelation to know I wasn’t on my own. But if I’m being honest, these voices on the internet didn’t feel real. It wasn’t until I was first in a room with others with alopecia (which didn’t happen until two years later) that I really felt like I wasn’t on my own.

Meeting others with alopecia via Alopecia UK made such a difference to me. It boosted my confidence further and provided me with practical tips and emotional support. I wanted to get more involved with Alopecia UK. I attended a charity meeting in November 2012 and have been involved ever since, becoming one of the charity's first ever staff members in 2016.

I remain passionate about the importance of there being an organisation that people affected by alopecia can reach out to and get support from. Many other small charities have not stood the test of time, especially with the challenges in the world over the past few years, but I am so pleased that Alopecia UK is still around to provide support and community to those who need it. 

Working for Alopecia UK doesn’t mean that the past decade has been totally plain sailing.  Like most people with alopecia, I’ve found my journey to be a bit of a rollercoaster as my blogs ‘Hair – Do You Really Want To Hurt Me?’ from 2019, and ‘A Shadow Of My Former Self’ from 2024 attest. Being part of the staff team for an alopecia charity doesn’t mean that I am without the occasional wobbly moment. But, on the whole, life with alopecia now is hunky-dory and I can reflect that alopecia has brought more positive things into my life than it has negative. It’s even led me to some weird and wonderful situations, but I think that’s a whole other blog post…

It's been cathartic to share my story and I hope that my words might help others. I am looking for others affected by alopecia to share their story as part of our '20 Stories for 20 Years’ campaign. I would love to hear from you if you have a story to tell.