Alopecia anniversaries are a weird thing to mark the occasion of. Today marks 14 years of being in a club I never wanted to join. On the 8th July 2010, I shaved my head for the first time to remove the last wispy hairs that had yet to fall out of their own accord. I didn’t expect that this would be the last time I had a full head of hair. I just assumed this would be a temporary blip and not the life-long condition that it seems to be for me. 

Over the past 14 years, I have nearly, but not quite, experienced full regrowth only for it to cruelly fall out again. Not once but twice. For me, losing regrowth is not any less painful than losing hair the first time. 

If I’ve learned anything in this time, it’s that there is no rhyme or reason in having alopecia areata. This frustrating condition has caused me more heartache than anything else life has thrown at me.

I remember in the Summer of 2010, a few weeks after that first head shave, thinking very clearly, “I’ll never be ok with this”. I believed my alopecia would prevent me from being happy. My thoughts were consumed with my hair loss:

“Does everyone think I’m a freak?”

“Does my boyfriend still find me attractive?”

“Am I the only bald 27-year-old woman in the world?”

“Why is my body failing me?”

"Will I be judged if I wear a wig?"

I struggled for more than a year, battling the constant intrusive thoughts. Family, friends and colleagues were very supportive, but I didn’t really feel like any of them understood. How could they? None of them were trying to deal with no longer recognising their face in the mirror. They weren’t struggling to find ways to face the world with confidence again. I didn’t feel like anyone understood just how difficult it was for me just to get out of bed and face the world every morning, when all I really wanted to do was hide away from everything and everyone.

It was Alopecia UK who changed everything for me. I found the charity in 2011; I wish I had found them sooner. I found their online chat forum (now replaced with our popular private Facebook groups). I suddenly realised I wasn’t alone. I was able to hear the experiences of others and share my feelings with them, knowing I would be understood and not judged. I found practical advice about wigs, headscarves and make-up. Being in touch with Alopecia UK made me feel lighter, as if some of the burden I had been carrying was being lifted away. 

It wasn’t until May 2012 that an opportunity arose to meet some people with alopecia face-to-face at a photography event in London that Alopecia UK had advertised. For the first time ever, I met others who had gone through the same experience as me and I cannot tell you how much that helped me. I met another woman called Amy, also in her twenties, who had the same eyebrows as me! (we’d gone to the same permanent make-up technician).

Making that trip to London was the best thing I ever did. I started to feel ‘normal’ again. It wasn’t just me! There were lots of others. I now understood how life-changing peer support could be.

I wanted to get more involved with Alopecia UK and at that time I realised just how tiny a charity it was. Entirely volunteer-led, no staff team, very limited resources. I started to volunteer in November 2012 and was extremely proud to be able to commit to the charity full-time in 2014 (although not becoming an official staff member until February 2016).

Working for a small charity can be a hard slog at times. Particularly with all that has gone in to helping to take Alopecia UK from a tiny charity run by volunteers doing everything in their limited spare time, to a small charity run by a dedicated staff team of one full time (me) and seven part time staff members. (So often people tell us they are surprised to learn that this national charity is run on such limited resources). Alopecia UK has been very lucky to have benefited from some brilliant staff, trustees and volunteers over the years who have helped to build the charity to what it is today, and we continue to benefit from brilliant individuals who support us. 

We have come a long way and I am so proud of the work the charity does to improve the lives of those affected by alopecia. Alopecia UK has certainly improved my life. And I am thrilled when I hear others talk about the positive impact that the charity has had on their own life. I hope Alopecia UK can continue its work for as long as we’re needed.

I really hope that in my time with the charity I have helped others. I have met thousands of adults, teens and children affected by alopecia and by hopefully helping them, they have also helped me.

I wish I could go back to that day 14 years ago and tell myself that it would be ok. That actually, this might be the making of me. That alopecia would bring wonderful experiences and people into my life. That I would one day be able to feel happy and confident with my bald head, even if to begin with I could barely look in the mirror.

It is wonderful to reach a point where I think positively about my hair loss, a place I never dreamed I could get to.

Which brings me to end this blog with an ask. Since 2012, I have been proud to not only volunteer and work for Alopecia UK but also fundraise on multiple occasions (thank you to my family and friends for their support with my constant asks for donations!). In addition, I am pleased to give a personal donation every month. 

I consider myself an ally of Alopecia UK, and people affected by alopecia. My ask is, could you become an ally too? Alopecia UK would really benefit from some more regular donations. Whether you can afford to give £3 a month, £30 a month or £300 a month (or anything in-between), every contribution, no matter the size, plays a crucial role in ensuring those affected by alopecia always have a place to turn to.

Become an AUK Ally today