All my adult life I’ve known what alopecia areata is. I just never expected it to happen to me. It doesn’t run in the family. My next door neighbour, a woman in her sixties, suffers from it, but only a little, a couple of small patches.

I had no idea men could get it. I’d never seen a man with patchy hair and I always assumed any younger man who is bald had chosen that look. I’d always had a healthy head of hair although it was of the fine variety, not luxuriant and curly. And there was no grey. I didn’t expect any; my father had none as long as he lived.

During a visit to the hairdressers in early September 2018, sweet Caroline asked me if I knew I had a small bald patch on the back of my head, about the size of a fifty pence piece. I didn’t – no-one had told me.

She was certain it was because I’d had a shock or something, perhaps suffered a bereavement, and that it would soon come back. She was so certain I thought nothing of it. A week later, I was in Hamburg for a music festival in an Airbnb and noticed it for the first time by way of two mirrors on opposite walls in the bathroom. That’s the only way I would have seen it.

It was nothing to write home about and I forgot about it until mid January of the next year when I glanced into the mirror while getting ready to go out to the pub one Friday night and saw a bright light shining off the top of my head like a beacon. A piece about the size of a teacup was missing out of the front left side.

Again, no-one had told me.

When I’d picked myself up off the floor I actually started looking for it, as if it might still be intact. I soon found it, in bits, under the pillow. It must have been hiding and growing in there for weeks.

Now I had to take it seriously and I pondered how it might have started. I traced it back to a day early in August when I should have flown to Oslo for another music festival and interviews with artists but an almighty cock-up by Manchester Airport caused me to miss the early morning flight, and the entire itinerary of three days completely collapsed. I have never been as angry in my life. So aggravated in fact that I ‘lost’ the rest of the day. I remain convinced to this day that was what primed it. (And there is more to come on the same theme, later).

I visited my GP, whom I typically trusted but he was unsympathetic and off-hand, merely prescribing Dermovate “although I’m not sure what good it does” and that set the standard.

He did refer me to a local integrated health centre (IHC) where there is an outsourced, private sector-run dermatological department. To cut a long story short I found them wanting, with virtually zero empathy from any staff member and I ultimately asked (another) GP to refer me to another hospital within the NHS. I had by then joined Alopecia UK's Manchester support group and had learned about where I could be referred to. 

One thing the IHC did get right came courtesy of the very first doctor who examined me there; one who found it easier to relate to patients and their concerns. He told me that there were some “baby hairs” growing and that the hair would return within two years. I didn’t believe him (at that time 90% of my hair had gone along with eyebrows and lashes, and what remained was albino white and so fragile it looked like I’d caught the full blast of an atom bomb; I felt like I looked like a freak) but as it turned out he was spot on, almost to the day.

The hospital treatment was routine, again focused on Dermovate, which I used on and off, without enthusiasm and without a shower cap. I have always declined Minoxidil on the basis that watching what’s left of my hair fall out on the slim expectation that more will quickly replace it doesn’t motivate me.

I want briefly to talk about the psychological effect. During this first period the sensation was once of emasculation. I would only go to the pub, or anywhere else for that matter, wearing some form of cap or hat. I tried bandanas but I can’t tie them properly. The hats and caps, even during the heat of summer, stimulated odd looks and nudges and I became paranoid because I have a very short temper that I’ve successfully repressed all my life but this situation taxed it to the limit, and still does.

I confided in some of the regulars that I know well about the condition and they insisted they “hadn’t noticed” but I’m not so stupid as not to know they were just being kind.

I became very depressed about it at one time but managed to get past it. I don’t want to go there again anytime soon.

Moving on, in April 2021, a year into the pandemic and two years after I was told my hair would return, I noticed some dark hair growth just above my forehead. Within three months all the hair had regrown at least 90% and in the original colour.

It stayed that way for about a year and then started shedding again, this time more rapidly from the off, although I didn’t lose as much this time (70%). There was a secondary spell though, earlier this year, during which I was shedding some of the remaining white hairs.

What caused it this time around? Again I can only speculate. I have always been suspicious about the side effects of the Covid vaccine, which is being blamed for many illnesses of course.

But I also had another ‘anger issue’ and, would you believe it, it was another trip to Oslo that had to be aborted, this time on account of ‘Storm Eunice’ (18th February 2022 for those that remember it). This time was worse because the anger was directionless. Apart from an airline that cancelled a flight and then put it back on again while I was making my way back home, who do you blame? God?

And it lost me a friend, the musician I was going to see, at least for a while. I was incandescent.

It was exactly five weeks later that my hair began to fall out again.

I returned to the hospital. I was offered several options including steroid tablets but they are unsuitable on account of a blood pressure issue. Another treatment would have involved me going there for an afternoon each week, which is impractical.

I am aware of the JAK inhibitors and that they have been approved in the USA. Do I think NICE will approve them here? Probably not, and even then it’s down to individual health authorities to supply them. I’m not hopeful.

Accordingly I decided to look into getting a wig, a piece, whatever you want to call it and contacted a nice bunch of people at a supplier called Trendco in Manchester.

I wasn’t prepared for the weight of a wig or the heat it generates; nor that the styles tend to be those of 1990s pop stars, but my intention is still to go through with it.

But another problem has arisen. It was indicated to me that I would not qualify for NHS support on account of my gender. I’m a bloke, not a woman. 

The matter is with my MP although I have received a message from the hospital to say that they will write out a prescription, which I am awaiting.

I’ll conclude by making some remarks about the overall standard of treatment I have received. I am dismayed by the lack of imagination shown in the treatments offered, which is often in the way of a tick box exercise. That is one reason why I wonder if alopecia might better be treated by hospital departments that specialise in auto-immune diseases. I have become convinced there is often a link between other such illnesses and alopecia.

(I have at times related my personal experience of other symptoms I have experienced to dermatology doctors and how the timing of those symptoms synchronised with the progress of the disease but they looked at me like I’d just clambered out of a spaceship from Mars. If it isn’t in their orbit they don’t seem to want to know about it).

And, as I mentioned earlier, much more professionalism needs to be directed towards the psychological impact of the disease. The lack of empathy seriously disturbs me. Of 20 doctors I’ve seen while I’ve had alopecia I can think of only two who demonstrated any degree of compassion. To the rest it just seemed to be a job, let’s get it over with and go home. And I don’t make comments like that lightly.

As I write, something strange is happening. I noticed some (white) hair growth and thickening across the front/middle part of my head, some on my torso, and even what might be the beginning of some dark hair regrowth just above my forehead where it  began to come back last time. None on my arms or legs yet (or the back of my neck which was always unnaturally hairy) and just a smidgen of eyebrow hair, on one side.

It could easily be a false dawn, only time will tell.

I should really finish by offering some advice but I can’t. The only situation I know about for sure is my own. Everybody else will be different.

All I can really say is that when I think back to the mental state I got into in the early part of 2019 I have come a long way since and made considerable strides in handling the adversity of alopecia and if I can do it anyone can.

So if it does get you down, think of the ever optimistic Thermians in the Star Trek spoof movie Galaxy Quest and their motto – ‘Never Give up! Never Surrender!’