I think definitely seek out support. I mean it’s good to have the support of your family, if you have that and your friends if you have that, but to have strangers who are also going through the same thing is kind of comforting to know that there are people out there who have the same thing as you and are going through the same things as you and having like bad days like you and good days like you. And also there’s like a whole host of information on support group websites and things about wigs and hats and events that you can go to. So I think the main thing would be just to seek external support instead of just kind of suffering alone. And also I mean families and friends are great, but if they’re not going through it they’re not going to know how you’re feeling. And I think it’s really important to have those kind of experiences available that you can like talk to people and hear their stories.

So I mean with the wigs that I have because I really-, I think I would-, cos I was so upset about having alopecia to start with and the fact that I would have to probably shave my hair off at some point, or lose my hair, I did go a little bit crazy in terms of buying wigs and while I only bought cheap ones obviously if you buy like ten cheap ones it ends up adding up but I think that’s been kind of invaluable for me just to have those there and I think I wouldn’t have got through it as well as I did if I didn’t have that option there. So it’s a good job I have an overdraft. But definitely the more expensive ones which are, I mean I have one which has like a lace front so it looks like I have a hair line and a parting, like a monofilament parting, so it looks like skin which is something that is really important to me in terms of going out. I mean I, I go out in public bald quite a lot but if I was going on a night out I wouldn’t necessarily feel comfortable going out bald because I mean drunk people make a lot of comments that they wouldn’t necessarily make if they were sober. So that’s been really useful because a lot of people can’t tell that it’s a wig and it’s just nice to kind of slip back into normality every so often. But again for a wig of that kind of quality it’s a lot of money. And I suppose it’s such a kind of niche market that they have to charge that much, but I do think it’s a shame that people are probably missing out, especially young people, and I think it’s really important for young people to have those options available to them and they probably can’t because of the cost. So yeah I mean, it has cost me a lot of money in wigs and stuff. And also in products like I mean products for the wigs and also products for my head, like I have to shave my head like cos I have patches of hair and I have to like, I was using some things that are recommended to me in like a last ditch attempt to try to grow my hair back. And I mean I kind of knew they wouldn’t work, but I still dropped so much money on them just because when you feel like you have to try anything that you possibly can to bring it back. And I’ve given up on all that now so now wigs are my kind of vice. But yeah it does add up. It definitely is quite expensive.

Has your alopecia had any impact on like university work or your life at university generally?

Yes actually lots, that’s very interesting. I told my supervisor that I was, like I might miss a couple of lectures and stuff here and there because I’m struggling with things and he told me to leave the university. He said, Maybe you should take a year out Mm. And I was like, I don’t wanna not take a year out, like I’m already a year behind because I’ve already taken a year out before university, and he was like, No you should definitely take a year out. And I’m like, You’re not listening to the things that I’m saying. I would like to stay in university, just maybe like I might miss a few lectures, but I’ll catch up on my own, like I’m fine with catching up at home. And yeah I kind of just left it there because he just kept pushing it which I mean I think for something that’s clearly not a physical condition, and also he said oh what was it? That I asked like if I failed this year would I be able to re-take it possibly, and he said, that would be, that would only be for unprecedented medical issues. And I was like, That, this is, that’s what this is. Like, That’s exactly what I have. And I, like he just kind of left it there and I was like well if this isn’t unprecedented medical issue like I, you might think that it doesn’t affect me physically in terms of how well I can do things, but like clearly it does because I’m saying I might miss things. So yeah it’s, that’s kind of difficult to explain to somebody how it affects you because without them knowing, I think also possibly the fact that he was male meant that he didn’t quite understand the severity of it to me personally. Yeah it was, it feels a lot like you’re not being listened to when you’re trying to explain that you might need a little bit more support. And they’re like, Oh you should probably leave, like that would help. Like No. No.

I just explained that I was straight, and then we kind of carried on the conversation and they looked quite embarrassed. But it’s, yeah it’s, I wasn’t expecting it so I was kind of thrown a bit off guard, and they said it and I was like for a second I backtracked through it and was like, Oh okay, no. Like No. And I, yeah I have a lot more interest from girls as well when I go out. I get like women hitting on me sometimes, which is very flattering. But it’s also I feel like I’m kind of, again it feels like that whole kind of fraudulent thing about I’m not gay, and I feel like I’m kind of embodying that identity which is, I mean I know that it’s not me, it’s the other people are putting that identity and assigning that identity to being gay, but it’s very interesting that kind of assumption that people make about you based on your appearance. And then me feeling like I need to justify myself to other people when really I should be able to go out in jeans and a t-shirt and be like, Hey guys, I like kissing boys. Like, so yeah I find that really interesting. It’s not something that I’ve ever had to think about before it’s definitely kind of opened up a lot of interesting things into how people interact and the kind of identities people assign to people.

I think considering like we’re supposed to be the generation that like uses computers the most and are on Facebook and everything, there’s so few people who are my kind of age on there talking about like their experiences with it which is, it’s kind of difficult because you have these two like sets of people that you can’t identify with even though they have the same thing as you they experience it in different ways. So it’s, is difficult to kind of have people to I suppose look up to, within the community because there’s nobody of like your age that can kind of express their, how they feel about things. And I don’t know if it’s because they’re less willing to talk about how they feel about things because especially like even the children aren’t representing themselves, they’re being represented by their parents basically, so I don’t know if it’s that but yeah it would be nice if there were more opportunities for people of my kind of age to get involved with things.

And what about that scenario you mentioned with when you were with your boyfriend and someone asked his permission to?

Yeah I mean, I don’t really understand like what the thought process was behind that because I, that, that annoyed me. That really annoyed me. I mean I don’t get annoyed easily by stuff like that because I always understand that a lot of people don’t know about alopecia, they don’t know what it is. But that did annoy me. I mean I don’t really know how I was meant to react to that like, be like, Yeah, tell him that’s it’s okay. And then he tells him that it’s okay like it’s the fact that I think the thing that annoyed me the most was that he literally took my agency away from me, because I, if my boyfriend wasn’t so aware of the fact that would annoy me, they might be like, Yeah that’s fine. Touch my girlfriend’s hair. And like I just, I don’t understand what the thought processes behind that kind of thing because just, I mean it’s difficult enough when you have something that people find kind of odd and freakish, and then for somebody to not ask you personally about something to do with your body it’s just, it’s uncomfortable. It’s really horrible. It kind of makes me realise what a lot of people who are like physically disabled and visibly disabled may often say that, like their carers or their parents get asked things instead of the person. And I mean it’s just, yeah it, I mean having alopecia makes you very aware of things because you’re very aware of people’s prejudices and people’s interactions with people that they don’t consider normal. And that example just really stuck out for me because it was just bizarre like, I just, I didn’t understand it at all. But I did have a go at him.

Yeah.

I did have a few words, yeah.

I think a lot of it is them either assuming that I don’t eat properly at university because it’s quite expensive to be vegetarian and healthy, cos you have to buy a lot of fresh vegetables every day and when you’re cooking for one person like a lot of things go to waste and, and it ends up being very expensive. So I think a lot of them either, I don’t know if they actually believe it or if they’re saying it just to try and stop me from being vegetarian but I think they’re just kind of trying to find any reason for it that they could possibly to explain it, which like I suppose I’ve been doing that as well. But yeah it’s quite annoying cos it’s basically saying like it’s your fault for doing this, then that’s why you don’t have any hair. Which is, it’s not, it’s not fun. But now that I know that it’s not because I’ve had blood tests and everything, it’s all, I have ammunition.

I think for me it was I felt like I should try things to try to stop it progressing as far as it possibly would. But I also think other people, a lot of people who were trying to be helpful but ended up sending me like newspaper articles and stuff about treatments that I should do, now it’s like I’ve looked at this treatment and I know that it exists. I’ve looked at the risks and I’ve said no. And they’re like, Oh you should really try this, you should really try this thing. And I thought I’m not, like I’m not going to try chemical treatments for other people’s sake but if it will make them feel better then I’ll try natural things. And at least I can say well I tried this, it didn’t work. Nothing’s going to work. Done. Cos it’s a lot easier to kind of stop people talking about it if you can say that you’ve tried it and just end it there instead of people going, Oh you should try this, and you should try this. And you know they have your best interests at heart, but it’s not stuff that you’re not aware of, because I’ve done so much research into it and I’m very aware of all the treatments that are possible and available.

I had like every colour hair. I mean my hair was like how I express myself. But I guess that’s the same with like any teenage girl really. So I think that was what I found difficult because I’d gone from like blue to pink to red to purple to everything and then no hair. Like what do I do? How do I express myself now? But then I thought well I could express myself through having no hair, like that works too. I mean fewer people have no hair probably than have blue hair and pink hair. And I think I’d kind of just about grown out of the phase of dying my hair silly colours when I started losing my hair, and I was like okay, well it’s time to kind of stop that and grow up and just like be natural. And if natural is me not having hair then you know that’s, that’s me. That’s natural. And that’s probably going to shock people more than me having blue hair. If that’s what I wanna do then that’s what I wanna do. You know? And also just having wigs as well, I have stupid coloured wigs for when I wanna go out, I have like a lovely blue wig that’s like all mermaidy. And it’s just, it’s nice having that option instead of having to like bleach your hair and then put a colour on and then leave it on for 24 hours and then take it off. It’s, yeah it’s, it’s nice to kind of be able to, I find it easier to express myself which seems weird because it’s something that’s kind of taken my agency with how I look away from me. But it’s so much easier cos like it takes me like 30 seconds to just put a wig on and I’ve just changed how I look. So yeah it’s, I, it’s quite liberating, it’s quite nice.

So there’s minoxidil which is available branded in like Superdrug and Boots and stuff which is I think it’s 2.5% for women and 5% for men. And 5% is a high dosage, well a supposedly high dosage, but you could be prescribed higher dosages by like doctors. So I’ve done a lot of research. I’ve read a couple of papers about minoxidil 5% in treating alopecia in women, so I went into Boots and I said Do you have one available for women? Cos this one says it’s for men and I don’t want to necessarily I mean I don’t know if there’s a difference between the products for men and women. I know a lot of things there usually isn’t, but if it’s kind of a medical product I don’t want to be messing around with that kind of thing, especially if it affects hormones and stuff. So I went in and they said, No we don’t do 5% for women cos it causes side effects, so get prescribed by your doctor or something. So I don’t, I never really kind of looked into it any further in terms of being prescribed it because that kind of put me off strangely enough. But I have read things about women getting things like facial hair and stuff which I mean it’s interesting the kind of gendered thing about where hair is appropriate and where it isn’t, so women were like, I’m really happy my hairs grown back, but I have facial hair now. And men would be like, Oh I have hair and facial hair now, everything’s great. Which I found quite interesting. And it’s also interesting the fact that they don’t make that available to women because of the side effects of things like facial hair which I’m not sure if it’s on like a hormonal level that it affects things like that and that’s why they don’t prescribe it or if it’s because they think women having facial hair is such a bad side effect that it would be a bad product to market. So I found that quite interesting. I haven’t really, there’s not really much available in terms of like hormonal effects of it, but that’s definitely something that I found really interesting.

Like a lot of the treatments involve steroids which obviously steroids aren’t necessarily the most healthy thing to have in your body. And also in terms of long term effects they’re not great. And with something like alopecia because it can keep happening throughout your life, I didn’t want to have to become reliant on something in order to have hair. I’d rather it just all comes out then like get, get hope kind of by having like steroid injections or something cos I think you can have oral cortisone, but I think that is quite rare to be prescribed because obviously it’s oral. And steroid injections are quite common, but I think you can, I mean for how extensive mine is I don’t think it would be recommended but I would probably have to have about 80 injections into my scalp which I’m not too keen on. It sounds quite painful. So I know a lot of people do go for that option but for me it, it with the amount of hair that I’d lost and the fact that I’m still losing my hair I don’t want to have injections in the patches that are there, and then have other patches form and then when I stop having injections for that hair to fall out. So I figured just leave it and let it do its thing.

Do you feel like they appreciate the significance of alopecia in your life or-?

That’s a good question. I think my hairdresser probably appreciates it more than the doctors do. Because I don’t know if maybe a lot of people don’t go to get a diagnosis when they are diagnosed, like when they have alopecia because they are embarrassed or whatever. Or if people go and they’re not given enough information about it. But I do feel that especially, even when I went to a dermatologist who must’ve seen hundreds of people with alopecia she didn’t really seem to know what she was talking about. And it, you kind of lose your confidence a little bit because it’s, like if this person doesn’t know what’s going on with me how, how am I ever going to understand what’s happening? But I do think that a lot of doctors don’t, either don’t think it’s important because it’s not like painful or life threatening or anything, and also I think because there’s so much focus on the kind of scientific side of medicine people don’t really understand the social impact and there’s not much documented about the social impact. And especially not the doctors are going to view, they’re not going to go and read something about like people being sad because they don’t have hair. They’re going to read like about the autoimmune diseases and stuff. So yeah, it-, I don’t really expect doctors to understand that kind of thing and to understand the impact of it but I do think it would probably help, especially with diagnosis and with making patients feel a lot more secure about it.

I only went back to get another blood test to check that my iron levels were back up, and after that I thought I know what the treatment options are. I know that you can have like injections in your head, and I didn’t really fancy having injections in my head. And a lot of the other treatments would affect me in other ways and would have bad side effects. So I thought, I’m healthy, you know like the only problem is that I’m losing my hair, it’s probably best to just leave it and let it do its thing instead of having something that will interfere with me in other ways. So I only went back to get that blood test done to check the results and apart from that I haven’t really been back.

Are you still taking the iron tablets as well?

I’m not cos they, it was quite a high dose so you take it for a short amount of time. And then when your iron levels are back up you just need to make sure that you keep eating iron, but I’m not on the supplements any more, but I do have to watch what I eat.

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 think it’s really difficult to explain to people I have an autoimmune disease cos they’re like, Oh no, do you want to have a lie down? Are you okay? And it’s like, No, like I feel perfectly fine, I’ve had blood tests, everything like I’m completely healthy. But then I don’t have any hair and obviously when people see somebody without hair they assume they’re having chemotherapy so they, it’s something that you associate with people being very sick. And I think it’s quite interesting the way that you interact before when they assume that you’re sick, because you’re like, Do you want me to do a cartwheel like to prove that I’m fine? Like is that going to make it better? Like I have people offering me seats on the tube and like I feel bad cos like I feel like it’s kind of fraudulent cos I’m not, I’m not sick. Like I’m fine. But then you’re told that you have an autoimmune disease and it’s kind of difficult to like understand that you’re well but also that you have a disease that clearly affects you physically and visibly. And I think, I think that kind of thing needs to be explained to people that just because you have a disease doesn’t mean that you’re necessarily sick.

So what was it like when you saw the nurse the first time and did she suggest anything?

No.

No?

Not anything. I mean she didn’t, she had to look up what it was so the chances of her knowing like the causes behind it, or the treatments were pretty slim. And I suppose also because she was referring me she didn’t need to know that because she was like sending me to an expert. But then even the dermatologist I think she did tell me that it was an autoimmune disease but she didn’t, if I didn’t know what an autoimmune disease was she wouldn’t have explained it to me. And I had to find all that out for myself and it’s kind of good that I knew about that beforehand, but I think not, and I don’t know if there’s an expectation that doctors think that people know about things that the doctors know about, like autoimmune diseases, but I know that a lot of people don’t know what an autoimmune disease, especially, especially in the context of alopecia. And they don’t understand why it could possibly affect your hair. And I don’t know if it’s that it’s considered not important to explain that bit because I suppose we don’t really need to know what’s going on like behind the scenes, or if it’s that doctors expect us to know that kind of stuff. But I think if I didn’t know what it was I would’ve been very confused if I was suddenly told, Oh you have an autoimmune disease, that’s why your hair is falling out. Off you go, like. It’s, it’s quite disconcerting. So obviously I had to do all the research on that myself, which kind of yeah it makes you feel quite insecure in where you stand in terms of whether, you’re like, Am I ill then? Am I sick? Am I okay? Do I have a disease? Like what’s going on?

And are all of those wigs ones that you’ve found yourself or are they sort of NHS supported?

They are all ones that I’ve found myself. But I do have one that I got VAT relief on, it was like a proper one with like a parting and stuff. So I got VAT relief on that so it’s supported by the government. But yeah it was, it was to know that you, it sounds awful, it’s nice to know that it’s bad enough, your hair loss is bad enough that you qualify for something like that because with, I am probably felt just as self-conscious with the tiny little patch on the side of my head as I do now. But then I wouldn’t have been able to get a wig at that point and it sounds silly, but it’s good to know that my hair loss is bad enough that I can get that kind of support. So it’s nice to have, it’s nice to know first of all that it’s clearly common enough that there is something there in place to help people. And also to know that I can as a student buy a wig that is clearly quite expensive and get some kind of help with that. So yeah it’s, it’s, it’s good to know that that’s there but I’ve never really looked into getting an NHS wig because they tend to be quite expensive anyway and I think for the quality that you get, the one that I have, it’s like perfect for me and I’ll probably stick with that around for like until my hair possibly grows back. So yeah just to have the kind of VAT relief on that is really helpful.

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.