I think my hair started falling out around April 2022, though based on how often my husband complained about me blocking the Hoover, it was likely much earlier (he now feels guilty for those moans). My hairdresser spotted it three months before my wedding: a 50-pence piece-sized patch on my head, which I simply hadn’t noticed. The panic wasn’t instant, but it soon arrived as, over the next eight weeks, my hair just kept coming out.

My hair was still there for my wedding, and I suppose lots of people didn’t notice, but I was terrified of the wind. Living in Edinburgh, one of the windiest cities in the UK, has made alopecia a challenge!

At work, I have a fairly public role, often meeting clients and often on stage, which anyone with alopecia knows can be a big deal at the start. I was open with colleagues, friends, and family fairly quickly, putting on a brave face, saying I was fine but just wanted them to know rather than notice and worry. But at home, I have to admit, there were many tears over many glasses of wine as I despaired about what was happening to me. GP appointments were unhelpful, and I was told I would have to wait at least six months before they’d consider referring me to dermatology, with no suggestion of any treatments.

Folks gave helpful suggestions, including that it must be stress-related (I wasn’t more stressed than at other times in my life) and that I should give up gluten, alcohol, and meat. All well-meaning but not helpful in the moment.

Then I found the Alopecia UK Facebook group and website, which were a godsend to me. It was a place where I felt understood. I could see people going through similar, if not exactly the same, experiences as me, and I felt part of a tribe, even if it was from the sidelines.

Through the page, I found out about wigs and had the courage to try and buy some, which, in truth, became a bit of an addiction in the first year. I bought expensive but wrong ones in a panic on my first trip; I bought cheap ones, second-hand ones, eventually realising that human hair wigs were more my vibe. Being fortunate enough to afford this, I picked two in different lengths and colours so I could switch it up.

I shaved my head with support from fellow group members who talked about their experiences. It was absolutely right for me; it gave me back some control, but I appreciate that we are all different.

I attended the Alopecia UK Big Weekend to increase my knowledge and understanding of why this happens. It was a wee bit overwhelming the first time around, but the people were so welcoming, and I will go back in the future. It is such a supportive and educational space.

I went from never being seen without a beanie or a wig to not caring if I was dancing in all my bald glory at a friend's wedding. And then, very slowly, my hair started to come back.

Currently, I am rocking a very short-dyed blonde hairstyle (or at least I am trying to), and do you know what? I’ve realised I am okay being me with long hair, long wigs, short wigs, headscarves, a shaved head, and my new short cut.

I’ve been waiting nearly two and a half years to see a dermatologist, and if I get that appointment, I will go. My hair is currently in good shape, but I am aware that may not always be the case.

So, what lessons were learned by this 50-year-old over the period?

1. Grieving for your hair is okay; it can feel like a loss.
2. Be open if you can; people are more supportive than you might expect, and it can take away the fear of it being pointed out.
3. Find your way to take control – it was shaving it off for me.
4. Experiment—I loved being blonde one day, brunette another, and throwing in a bit of red, too.
5. Lean on those who love you.
6. Worry less if you can; it gets easier.
7. Don’t stop exercising – I did at the beginning and now have two stones to try and lose.
8. Some folks compute your face with your hair, so be prepared for people not to recognise you. I found this an odd one, and sorry, chaps, it was almost exclusively men who did this.
9. Connect with Alopecia UK, whether in support groups, on Facebook, on their website, or at their events; they can really make a world of difference.
10. Accept it is likely to be a rollercoaster ride, with highs and lows, but while on the journey, there is a lot of fun to be had if you embrace your fears.