Triggers for alopecia are uncertain. So people can have the genetic tendency, and never get it. Or they might get it and it goes away. Or they might get it in childhood, and not again. Or they might get it in adulthood. And so presumably there is some trigger in the environment, or that affects you externally, quite apart from that genetic tendency. And we’re very ignorant about those. Now most people with alopecia are fairly certain that stress is a trigger, and I think it probably is. I don’t know how that works, but it does seem that people associate the onset of their alopecia with some stressful life event. Sometimes a physical stress like an illness, but more often an emotional stress, or a shock, or a bereavement, or something like that. It’s very hard to test that, because of course there is that natural tendency to link things together and assume that it’s cause and effect. So if something horrible has happened and then you get alopecia, of course you naturally think that that’s the cause of it, and we can’t be certain. But it’s, it’s mentioned sufficiently often that I think it probably is a real phenomenon, that stress can bring on alopecia in a susceptible individual. But we don’t know of any other specific causes.

At first we had absolutely no idea what might have triggered. I had quite a few sort of bad experiences towards the end of my first year of secondary school, I had one of my relatives pass away, I had a massive falling out with one of my closest friends. And then, of course, the lot of exams that I just was not anticipating at all. So we didn’t know. It was a limbo between oh, could it have been that, could it have been that. And then, throughout the years we mapped out, using my weekly appointments, you know, when I had hair growth and when I started losing it as well. And I had quite a few periods of sort of oh it’s, you know, it’s growing back and then suddenly ooh, losing. And when we mapped them out, when looking back, my dermatologist said, Oh, you know, it was summer of 2009 and then it was like January 2012. And I sort of watched it and I thought well that’s when I had Year 7 exams. That’s when I had GCSE mocks. That’s when I had a couple of GCSEs. That’s when I had the rest of them; and it very quickly formed a pattern of oh look, that’s an exam. Oh look, there’s another one. So it very quickly sort of formed of, I have a bunch of exams and then in a month immediately after was a pattern of loss. And then it would gradually work its way back to sort of halting loss and then growing again, which was quite interesting, cos obviously then we’d sort of figured oh no, my specific trigger is exam stress.

I talked to my mum quite a lot about it and we thought it could be to do with the-, the doctor kinda agreed, it might be to do with like suppressed feel-, like feelings. I lost my nan when I was quite young and I was really close to her. She was almost like a second mum. And I didn’t really grieve properly if that makes sense. I kinda bottled it up. I didn’t really cry much and my mum kinda realised how serious it was when she asked me about that time and I couldn’t- I didn’t have any recollection of the funeral or anything around that time, I kinda just blanked it out. So I went to see a counsellor when I was losing my hair as well through the hospice where I lost my nan through because it was related to her. And I feel like that really helped with my experience as well, talking to someone. I talked to them maybe once a week for a couple of months, maybe not that much, not even that much. But I just felt like talking about my hair loss and things like that-, I talked mostly about hair loss and a little bit about grief. But I really felt like that kinda helped me work out who, you know, who I was inside I guess, I don’t know. You know, I think that’s what kind of contributed to my personality shift maybe is the fact that it’s not important and, you know, I talked about all sorts of things, all about my whole life but like, you know.

I just-, it kinda made me feel better as well if you put it down to that. But I still have no idea what caused my hair loss like I, I feel comfortable about that. I, you know, it’s not like you talk about that, you feel better, your hair grows back. It’s not that easy. So I have no clue.

So, what my parents think it was, I was really ill at the end of Year Six. So it happened in the October of Year Seven. So in the summer of Year Six, I was really ill. And I was having panic attacks and I was having weeks off school at a time, just because I felt ill and stressed. And then, over the summer, my grandpa got cancer. But it wasn’t very serious cancer, but I didn’t know that and no-one was telling me what was happening, so I thought he was going to die and I’m really, really close to my grandparents so that was an added stress. And then, also, obviously, I was moving schools to a place which was, cos I went to a mixed primary school. And I was going to a private single sex school, so it was a really, really big change. And I was really worried about it. So, yeah, I think it was stress and worry. I know for a fact it gets worse when I am more stressed. So I, that’s another thing I have to monitor. I have to monitor the amount of stress I’m under so I try and not get myself into stressful situations, like if there’s drama at school, I try and stay out of it just so I don’t put myself under unneeded stress.

And have you found that when your alopecia has sort of changed, when different patches have appeared, can you sort of pinpoint certain events that have happened for you at that time?

Not really. Sometimes, I remember I got into a really bad argument in Year Eight and that, that triggered another patch. But I think it was just, I really don’t know, but I think it was just all that stress sort of got so, it built up and built up and built up that my body or immune system sort of twisted it to attack itself, because I was bottling up all the stress. Because I’m not, I am really not very good at talking to people. And I’ve gotten better and better over time. But I’ve, like, I couldn’t ever talk to even people like my parents. So, I bottled stuff up and I think that just got twisted. And alopecia was a response to that.

What have been your main sources of information about what alopecia is?

I guess my parents. So, what they were told at the time. I think they definitely felt that there wasn’t very much research into it, and I know that they, it was like a really horrible time for them because obviously they’re really sad that it happened, but one of the things that they got asked was like what their marriage was like because they were worried, the doctors were like, “Is this child really stressed? Is that why all her hair’s fallen out?” Obviously like their marriage was fine and I think that was really like tough for them.

But yeah, so I just know what they knew at the time, and then maybe I’ve like Googled it at some point but not really; like I’ve never taken the time to like look it up really.

So with the doctors thinking that stress may have been a factor, is that them trying to work out what could have started, triggered alopecia-?

Yeah but I think, I don’t think, I mean I don’t think you can be stressed when you’re three, I just think And I can’t have been stressed my whole life since as well so I really don’t think that’s what it is. But I think that’s just like one of the reasons that it does happen to some people, so.

Mm, yeah. Do you know why there could have been a trigger for you or is it just completely unknown?

Completely unknown, yeah, from what I’m aware.

But for me I think it was because I changed contraceptive pill which I’ve done a little bit of like asking people and stuff, and a lot of people have found that when they’ve changed contraception method they’ve like they, their hair has started falling out, and it’s triggered something. So that’s something that I find quite interesting and also really annoying cos I’m like, Why did I change? But obviously, I mean there’s no way of knowing cos it could have happened anyway, it could have happened like in 10 years it could have happened 10 years ago. So I do think, I mean there’s definitely a kind of biological predisposition to it, because looking at my family history we have so many, we have like all of the autoimmune diseases that you could possibly have, and then to, I think I probably inherited that and then just it needed something to trigger it, to set it off which I think was like the hormonal change from changing my contraceptive pill. But I’m not, I mean again I’m not sure. And I kind of don’t want to think it was that because that would just annoy me to think that like I could have avoided that, which yeah, a lot of people have said that, that’s something that they believe was a trigger for them as well. But then a lot of people think it was stress. And it’s just so difficult to know because it could have happened at any point, it could be a complete coincidence.

I’m on the pill, I use Celeste I started taking that properly every day after the first time I went to the doctor so from sort of April I started taking it every single day. And I suppose even that sort of, she said to see any kind of change in your hormones that will take three months and two to three months later my hair was growing back. So I do, I think hormones are probably a big part to play in it. But then once my hair started growing back then it went through my mind as, well it didn’t have to happen maybe I could have stopped it from happening if I’d have stopped taking the anti-suppressants properly or took my pill properly and it might not have ever happened to me. So then I started blaming myself so that was hard as well, getting me through that. And even now I still, I still blame myself and I, I will still look back and think it was my fault I got so stressed and took all, didn’t take these tablets I was supposed to be taking properly so they weren’t, even now I’d say I probably do still blame myself for it happening.

Since I’ve been losing my hair, I’ve also, there’ve just been points where I feel like really weak and I get really achy arms and stuff. So I’ve been to the doctor and sort of asked them about that and they said it’s nothing to worry about. Yeah, I think I just have really bad luck with my GPs [laugh]. But I’ve, I get an impression that I have other things that are coming alongside when I have quite a bit of hair loss. So I think there might be something else connected with it but I’ve not really got any help with that yet. So it’s all just been achy points, feeling really weak, sort of fatigue. But yeah I’ve not got any help with it. Yeah.

Have any of the doctors done any like blood tests or anything like that?

Yep the doctors. Yes, when I told them about the achy joints and stuff they ran some tests of like, I can’t remember, it was some tests to see if your muscles are inflamed or something. And all the, I think they ran about 4 or 5 tests and everything came back negative and they said, It’s probably fine. It will probably go away. I don’t do much exercise either which they said like, I did tell them I don’t do much exercise but they said like, It might be like an exercise sort of like, might just pull something, or whatever. But I don’t do much exercise. I didn’t do any exercise when it sort of came about and also thought I might have slept on it funny but sleeping on it funny I mean I had, I’ve sometimes had the aches for like a week and a half, two weeks. It doesn’t feel like, it probably should have gone away if I just slept on it funny. So yeah it’s a bit odd.

So I have the underactive one. So I just have medicines every day to sort of control it which, yeah. So I just have medicines to control it and apparently people who have thyroid problems are more likely to have problems with alopecia. I don’t know if there’s too much research gone into it but, but there have been sort of correlations between those. Yeah I did ask my doctor about the medication I was having cos I thought that maybe that might be something that was triggering the alopecia. But they, they did actually switch me for a bit to a different one and it was actually causing more problems with my, my thyroid sort of-, because when they did a blood test they said that, This isn’t really working for you any more. So they sort of switched me back to the medicine I was having before. But in the time that I did change my medication it didn’t seem like there was that much difference so it was probably about two, two months ish. So yeah there didn’t seem to be much difference with alopecia. My alopecia was, so my hair was just falling out pretty much the same speed that it was falling out before. So, I don’t think it’s medication but then apparently there might be some links which I’m not really aware of, like in detail what they are but.

Was the underactive thyroid diagnosed before you had alopecia? Yeah?

Yep. So it was diagnosed [hmm] I think like September 2013 or something, so quite a while back. Yeah, so it sort of took me sort of a year to sort of control it almost cos it was always like over-medicated or under-medicated. And so it took me a while to sort of get there which was when my sort of alopecia started coming about which was why I sort of asked the doctor about my medication, whether that was having an effect with the alopecia which is when they tried adjusting it.

I remember going to a hairdressing salon like college salon so they were trainee hairdressers and it was probably the worst experience that I had with hairdressers. And basically I was having my hair cut by someone who was learning hairdressing. And then their tutor came up and was like, Do you have alopecia? Yes, and then I said, Yeah, oh, I’ve had it since I was two. But then they asked silly questions like, Arr, have you had extensions? I just told you I’ve had it since I was two, and but I was just like, No. And then I said to my sister like once I’d left, Why did she ask me all those questions? cos I think I was about 12 at the time and I wasn’t necessarily a girly girl so I didn’t really care about extensions or anything. And she was like, Because extensions can make your hair fall out, and I was like, I told her that I’d had it since I was two, it’s not gonna-.