Alopecia: the triology

I’ve just turned 35. I have had Alopecia since I was 10 years old.

Alopecia – in simple terms, means hair loss. The kind of Alopecia I have is an autoimmune condition. This means that my body attacks my hair follicles for some unknown reason.

1) Alopecia areata

My Alopecia started with small patches of hair loss about the size of a 10 pence piece. This developed into two decades worth of rotating hair loss and regrowth… different areas of hair falling out then growing back each time… at its worst I would need to wear hair extensions and, at its best, the hair loss wasn’t visible or I could get away with styling my hair differently or using headbands.

Until, aged 31…

2) Alopecia totalis

All of the hair on my head fell out.

This was a dark period of time for me. I really struggled. Alopecia was a persistent, niggling presence in the back of my mind. Absolutely everything I did seemed to be affected by it in some way. My red hair had strongly defined me all of my life. And now it was gone. I felt lost. I bought a (very expensive) wig and tried to get used to wearing it and adjusting to the way that I now looked. Because I didn’t look like me anymore. And things did, slowly, get better…

I had just began to accept the hair loss when I started to notice patches of hair growing back. “It won’t last”, I thought. I didn’t want to get my hopes up. And yet the regrowth continued. It continued for over two years… it really was growing back.

My hair was down to my shoulders again. I went to the same hairdresser that had shaved my head in March 2019 and proudly asked for a haircut this time. She didn’t recognise me. I was thrilled and couldn’t believe my luck. I’d managed to somehow overcome it. Against the odds. Even my Dermatologist couldn’t believe it (less than 10% of people who lose all of their hair will have spontaneous regrowth).

June 2021. I noticed a small circular patch of hair loss on my left temple. "Not again, please". My heart skipped a beat. I rationalised that just because there was one patch didn’t mean that it was all going to fall out. “Ignore it”. Things seemed to be okay for another few months.

September 2021. My hair loss escalated rapidly. It was falling out in clumps in the shower. Coming out in clumps in my brush. It was all over the carpet. In my bed. This time, I felt unwell. The glands in my neck were swollen, I had headaches, and I felt incredibly tired and run-down. I tried to stem the hair loss with steroid tablets in an attempt to dampen my immune system. But it was too late and, within the space of around 6 weeks, all of my hair had fallen out. Again.

As if that wasn’t enough, I started to notice that my eyebrows were thinning. I knew they were falling out. How on earth was I going to replace those? Fear was setting in. And then Alopecia came in for its pièce de résistance. My eyelashes. These also fell one by one.

3) Alopecia universalis

All of my hair everywhere. Gone.

And that completed the trilogy. The Alopecia hat-trick. Honestly, when my hair fell out for the first time, I thought nothing could ever feel as bad again. But this felt cruel. If the first time was dark, this was pitch black. I could just about handle losing the hair on my head again, but now my face looked different as well. It was so much to process.

Cutting to the chase. Alopecia may not make you “physically ill” in a way that other chronic diseases do, but I firmly believe that it is life-changing. Alopecia is not just a cosmetic issue. It leads to a whole host of other physical symptoms related to the inflammation and associated hair loss it causes. In addition, Alopecia can be incredibly psychologically damaging. To be blunt, there is a recognised association with depression, anxiety, and increased suicide risk. People struggling with alopecia have taken their own lives.

The main thing I’ve struggled with is the lack of control. I’m a doctor and I also have a PhD. And yet, Alopecia remains the thing that has pushed me and challenged me beyond anything else. It’s broken me, several times. At its worst it is relentless. Inescapable. Every. Single. Minute. Of. Every. Single. Day. Consumed with thoughts about your hair loss and the way it makes you feel.

I have experienced people point out in public places, in a completely unsolicited manner, that I’m wearing a wig. I’ve been told that someone I thought I wanted a romantic relationship with had discussed with a mutual friend whether he should have a problem with the hair loss if I were his girlfriend. I’ve had men suddenly lose interest once they find out. I’ve also had men point-blank refuse to meet up with me when told about my Alopecia. One openly cited that he had an issue with my hair loss and dating “wouldn’t work” because of it. I have experienced strangers asking me in public places and in a completely unsolicited manner, how my treatments for breast cancer are going.

But, this isn’t intended to be a sob story or a witch hunt. Quite the opposite. It is intended to be a brutally honest account of my personal experiences of living with Alopecia which I hope will help to identify and normalise some of the less recognised impacts of this condition. Society has slid somewhat into a culture of “toxic positivity”. Yes, of course, I know deep down that I’m “more than my hair” and that any guy who bases his value and assessment of me on my looks alone is not worth my time to begin with (I call it my “a**hole radar”). Has that made dating with Alopecia any easier? Has that made having Alopecia any less crap? No.

Don’t get me wrong. There are positives. I wouldn’t be the person that I am if these experiences hadn’t shaped me the way that they have, and I will discuss those aspects too. But. Being brutally honest. I wouldn’t choose it. I wouldn’t wish it on my worst enemy. And I’d give a kidney to have my hair back. Learning to adjust to this extent of hair loss was incredibly difficult and something which, I believe, is not recognised, discussed, or supported well enough.

And that brings me to why I’m here. I want to raise awareness of how difficult living with Alopecia can be. I want to educate, inform, and support people (with and without Alopecia), from both a medical and personal stand point. I want to take as much positivity as I can from what, at times, has been a traumatic and upsetting experience, often feeling like nobody around me (with all the best will in the world) can possibly truly understand how it feels.

If this blog can help just one person feel more informed… better understood… less alone… then Alopecia wins a little less.