I first had my like my first bald spot when I was 14, about the size of an apple on the back of my head. I didn’t really think much of it. I was quite young. I just thought it was temporary. It will be fine, you know, nothing to worry about. Six months later, it grew back. And a couple of years later when I was 16 I had-, it came back again and I thought oh’, you know, no problem. And that time it just gradually got bigger. I just covered it up, you know, combed my hair across it, you know, just a bit-, no one really noticed. And then probably I started sixth form, I got like two smaller ones on the top of my head and I thought oh no. I was more worried about it but I was still saying, you know, It’s fine, type of thing. And gradually over that year they got bigger and bigger and they- then they met in the middle and that was really hard. I had, I had like a big spot at the back of my head for ages and I used to wear a hat a lot. And that was the most difficult time I think. I felt like I had to wear a hat because, you know, it was quite hard walking around and I felt like people were staring. People used to look because it used to look a bit odd. And then when I-, in November last year, so almost a year ago now, I lost about-, I had about 50% hair loss on my head. So I decided to shave it all off. I felt much better after I shaved it off like it was liberating I guess, you know. It was just quite nice and it was just I had to do a speech at school the next day, completely forgot about that when I shaved my head. So I had to go in and like in front of the school and I had just my shaved head. It was just almost quite nice because everyone saw the new me in one go and it was just like, I took control of it rather than it controlling me. And then from that obviously I had little like stubble but that gradually disappeared by February.

I think a big thing that’s missed out on is how rapid or how different alopecia can be, so it can vary. So some people can have like their hair go in two weeks and other people will be losing their hair over a matter of months and, or like years, and so that really varies and has in a-, it’s interesting to see the different effects, cos it can have the same effect on a person that’s lost it in like three weeks to a person that has lost it over a matter of years, but then, struggling with it for years can sometimes be tougher and also it makes it less likely to grow back as well, like your chances of your hair growing back depending on how much you’ve lost, go down. So I know that they say, I think it’s after the first year of alopecia if it’s under, if it’s over a certain amount of hair gone and without like good regrowth then you’ve kind of gone from a 70% chance or something down to like a 20% chance of it regrowing. But then it’s all just numbers and guessing because, you know, people with alopecia universalis, they say, you know, they’re less likely to grow their hair back and I know of someone that had all their hair grow back, no treatment, just grew back out of nowhere and that was after 10 years, which is really weird because you don’t know, you just, I think it’s possibly because it’s your immune system and it could maybe be a different stage.

During school I became more distracted, and did not concentrate a lot of the time. I would often try and sit at the back of the class, so I felt no one was looking at me. And in my exams I sat at the back, because I always felt like someone was looking at, looking at me throughout. In my A level exams, my eyebrow actually fell out during one of them, or noticeable anyway. So I had hair on my page as I was attempting to work. And that was one of the biggest distractions ever, so. And lower down the school when I had more hair, and the hair loss was occurring, as it was falling on my page during the class, I just didn’t pay attention, and I started getting distracted more and more.

Definitely, because I am really neurotic about it, so if I think, if like one piece of hair comes out I’m like, Where did that come from? and I sort of pull from that place, which doesn’t help, so don’t pull [laughs]. But I remember when it first started it was like there was hair everywhere. There was hair in bed. There was hair in the bath. It was like you could literally scrape the bath and you’d get a massive chunk of it. I would wake up to hair all over my pillow, it would be all over my clothes. So it was really, really bad and sometimes when I think about how alopecia hasn’t been that bad, I think back to waking up and seeing it everywhere or stepping out of the shower and it being everywhere or just it being constantly around you. And when it’s constantly around you, you can’t sort of not think about it, because you’re constantly being reminded that it’s happening. And if you touch your head, it might come away. So, it’s that that was probably the hardest thing to see, because you just want it to grow back so badly, and you, but you can still feel it and see it falling out around you.

And then I think it was a couple of weeks after that and it was just constantly coming out and I couldn’t wash my hair because I would like get the drain all laced up, and when you live in a shared house that really annoys people. And just like brushing, I couldn’t brush my hair. Like I would panic about brushing my hair because it would just come out and I, I’d been wanting to shave it for a while and then one night it was I think it was about 10 o’clock at night and I had a 9am seminar the next day, and I was like, Guys can you just like shave it please? Cos I’m just fed up. And they were like, Okay. And they all like gathered around in the kitchen and I was just like, Don’t watch me. Like it’s horrible. And unfortunately the clippers lost battery half way through, so I had to then like snip the rest off, but I think as soon as I’d got all of the hair off and it was gone I just, it was really like liberating, it was nice to not have to worry about constantly being reminded about your hair coming out. So I think that was when I realised that the worst thing for me was it coming out rather than not having hair. Yeah so I think, I mean it was, it was a positive experience for me definitely. And something I would do again if I ever had to. Because just I think the relief of it, especially when you’ve been living with your hair coming out for like the last four months it’s, it’s nice to not have to worry about it.

And can you tell me a bit about that what it was like when you were having the regrowth?

It was a slow, slow process. But I’ve originally I had a line from the front to the back, all gone in the middle and down the sides. And that middle bit was the first bit that ever grew back and it was growing back up like this so I was getting more remarks at school like saying that, I don’t know, I looked like I had a Mohawk or like chicken, like a chicken fluff, whatever. That I was happy to have it back, but I was willing for it to grow faster and after that the sides I, because I was hiding it from myself I didn’t like to look at myself in the mirror I never really knew when it grow back, grew back but it did. And then it fell out again 2013 and started growing back 2014 and that’s been a really slow, I’ve got that much in a year down the sides here. And it’s a slow process, but I count my blessings that they are there.

Alopecia areata does not scar. Scarring alopecia refers to types of alopecia which are due to inflammation in the skin of the scalp. So, for instance, there’s a condition called lupus which can cause alopecia hair loss which has a scarring process and that doesn’t recover. Usually-. Because the scar damages the hair follicles to the extent that they can’t recover. But alopecia areata is not a scarring process. The follicles are still there, but they may be very, very small. They’ve been attacked by the body’s immune system but they are still there and there is still the potential to recover. The, there isn’t a scarring process that completely damages the hair follicles so that they can’t recover.

We, we’ve kind of like, me and my family have spoken about it all the time and thought, y’know, could it be like physical health. Could it be like if you are eating enough healthy things and everything. And, my diet kinda changed recently this year and I’ve noticed that I’ve had better regrowth but it’s never been perfect kinda regrowth until I got ill and it kind of, it seems like my immune system’s kind of changed its direction into focusing on the illness instead of focusing on, on my hair. But no, not really [laughs]. Don’t know.

Would we be able to talk a bit more about how other health conditions interact with your alopecia?

Yeah. I don’t really know how, like I’m not, like majorly good with all medical stuff, so it’s all theories really. But I got quite unwell with a virus which basically, in bloods, was showing that my infection markers were extremely high. So, they were fighting, my body was fighting off something, and like the antibody, the ANA or something, the antibodies were very high and everything. And then we noticed about a month later that my hair was growing back a lot better, so the best it’s ever grown back and that was since being unwell, so since my body was kind of fighting off something very big, like it was, like stopping, y’know it stopped attacking my hair and it was attacking whatever illness I had, so, yeah. We think it could be a reason, but it’s all theory.

I think even now obviously the amount of people who said to me You lose a 100 hairs a day don’t worry about it, even now I find myself when I wash my hair, I’ll go and check the bath just to make sure it’s not happening. When I get up in the morning, I’ll check the pillow just to make sure there’s not a load of hairs and there’s been a couple of times when I’ve washed my hair and there’s probably been about ten hairs in the bath and I, I’ve panicked straight away thinking it’s happening all over again or I’ll be straightening my hair and bits of my hair will fall out and I don’t just think to myself it’s your natural hair cycle’, I think oh my God I’m getting alopecia all over again.

And I imagine that’s not how you used to think before-

No.

-you had your first patch, so it’s quite different ways-?

Yeah I’d see hair, I’d straighten my hair and I’d wipe hair off my trousers or and it was nothing. But now if I straighten my hair and I feel a bit of hair tickle my neck it fills me with panic and I’d say I straighten my hair every day and whilst I’m straightening it probably three, four hairs land on me and it still now fills me- and I think it will I think for the, even if I’m never ever had an experience with it again I think it’s always gonna panic me. Every time I get stressed I think the first thing that will come into my mind is my hairs gonna fall out again.

The first patch was actually in September of 2014 and then the other patches-. When I went to the doctor again it was sort of February 2015 so it was a good couple of months but then actually the, as I said before, the, the previous patch had actually regrown the hair which is why when I initially went to the doctor they said that it was likely to regrow cos they, cos I’d already had a patch which I noticed, that it had all been regrown. So they, they thought it was quite likely to regrow which they’re still saying it may regrow. It’s just that I’ve lost a lot of hair quite consistently now so it’s, it’s hard to sort of see whether it is regrowing cos regrowth actually takes like 3, 4 months to even start to notice the signs of regrowth. So it does take quite a while [laugh]. And considering I’ve lost all the hair sort of quite dramatically, it’s only sort of now that I’d be able to sort of see any signs of regrowth from the injections or steroid creams.