Many people we spoke to had alopecia while they were in school, at college or university. They talked about different aspects, such as exam stress being a trigger, wanting to ‘fit in’ with their peers and other people’s knowledge about alopecia.
Some people found that their hair loss had a big emotional impact on them which affected their experiences at school, college and university. Being around peers and meeting new people, including housemates in shared accommodation at university, made some people feel self-conscious. There was a range of experiences which varied over time and often linked to how much knowledge the people around them had about alopecia. A few people had alopecia when they were in primary school and found other children were “curious” but mostly “accepted” them as they were. Some found it became harder during secondary school and a few had been bullied or had rumours spread about them having cancer. In contrast, lots of the people we talked to found that their peers at university had more knowledge about alopecia but some still worried about ‘fitting in’. You can read more in other sections about the emotional impact of alopecia and on physical appearance.
Worrying about her hair was a big preoccupation for Arti when she was studying and meant sometimes missing lectures and seminars.
Worrying about her hair was a big preoccupation for Arti when she was studying and meant sometimes missing lectures and seminars.
Age at interview: 22
Sex: Female
Age at diagnosis: 22
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I missed lots of lectures and seminars and stuff. And yeah, so missing contact hours is quite detrimental sometimes. So I didn’t go. So yeah, I was missing out on quite a lot of the learning I suppose although there are resources – it’s normally never the same as going to the lecture and learning it with the lecturer that you can ask questions to especially like the seminars as well – incredibly useful environments to learn. So me not going to them was quite bad but I felt that I couldn’t go to them. Like, as I said before, I’d be arranging my hair kind of for ages before and like at some point I’d just give up in frustration and just be like, “No, I’m staying at home today, not gonna go”. Yeah, so it, in terms of other things like just general like essays or work deadlines that I had I wouldn’t say it sort of it affected too much because it was, for me, just the social side which was a struggle. Yeah, so yeah [laugh]. Obviously, as I said, the seeing someone about, at my university about it was really helpful and I think things were looking sort of up from there. Cos also sort of when you’re at university and you’ve missed quite a lot of lectures and seminars, you always feel like a bit like, “Oh I’m not sure if I should go back, it’s going to look a bit weird like-, everyone’s going to think ‘oh, she’s back’. And, I don’t know, it just feels a bit strange to sort come back after a while of not coming to lectures and seminars but yeah, I think I did sort of come back sort of slowly ish and I did-, I did prefer being like at university and, you know, actually learning along with the lectures and seminars like my, my fellow students [laughs].
Emily wanted to have the flexibility to miss a few lectures and felt her lecturer didn’t fully appreciate how alopecia was affecting her studies.
Emily wanted to have the flexibility to miss a few lectures and felt her lecturer didn’t fully appreciate how alopecia was affecting her studies.
Age at interview: 20
Sex: Female
Age at diagnosis: 19
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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.”
However, lots of people said they were given good support and remember particular friends or teachers who helped and reassured them.
Emilie says her reception teacher helped her a lot when her hair started falling out.
Emilie says her reception teacher helped her a lot when her hair started falling out.
Age at interview: 18
Sex: Female
Age at diagnosis: 4
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And I’ve got a lot to thank people, you know, teachers at my primary school, especially my reception teacher - she helped a lot, cos my hair started falling out in her classes when I was in Reception to Year 1 and she was there a lot for me. My mum was working at the school at the same time but she obviously she-, my mum couldn’t keep coming to me and seeing how I was because she was working, it was her job, which is absolutely fine. But when I did need help I’d go to my teacher first, because she was my teacher but I’d also had my mum there as well. And she actually gave me a little dog which is from the film Lady and the Tramp, so a little grey dog, Tramp, and I’ve still got him and she said, “If there’s ever an issue and I’m not around or your mum’s not around and you feel very isolated, tell your problems to Tramp and put him in your pocket.” So basically putting your problems, saying your problems out loud and then putting them away and dealing with them. And I saw her the other day actually at a barbecue and every time I mention I’ve still got the dog, you know, “Thank you, thank you for making me as whacky as I am now, thank you for helping with my confidence and supporting me like another mother.” [inhales] Very-, yeah, just had a very supportive, kind of environment there at school.
Grace knew someone at school who also had alopecia and they would ‘giggle’ about it together.
Grace knew someone at school who also had alopecia and they would ‘giggle’ about it together.
Age at interview: 18
Sex: Female
Age at diagnosis: 10
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I know someone from school, completely forgot that, and he-, in the last I think it was probably about the same time as me, which is quite weird, but his hair started to go really patchy and he literally just shaved it off and it was just that’s just the way that he is now, and it just looks like he's just shaved it really, really short but really doesn’t have any hair. So, I think he was he was quite lucky, but I know that he'd kind of suffers in the same way that I do, so we kind of giggle about it like, "Oh how's your hair doing? Oh how's your hair doing? Oh…" He always wears hats and stuff and I'm like, "Oh yeah, is that cos your head gets cold?" I'm like, "Yeah, I get that; I understand that." But I think in the way that, if a bald boy went out; if they kind of…it was just their hair, people would be kind of be like, "Oh yeah, he's just shaved it really short."
Stress and upset from school, college and university could be a trigger for some people’s alopecia starting or becoming more extensive. Many people thought the stress of their exams had set off their alopecia. Becky said she’s “not a stressed person” but always seems to lose her hair around times that are supposed to be stressful like exam time. Hair loss could also be a distraction at school. Michael says he often sat at the back of the classroom and didn’t want to go to school because he “didn’t want to be seen”. He remembers a time when one of his eyebrows “fell out” during an exam and onto the page which he says was the “biggest distraction ever”.
Rosie is starting her degree soon and expects that for the next three years she will have a “cycle of growing, exams, hair loss”.
Rosie is starting her degree soon and expects that for the next three years she will have a “cycle of growing, exams, hair loss”.
Age at interview: 18
Sex: Female
Age at diagnosis: 12
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Yeah, so obviously with university you have exams, pretty big exams at the end of every year. So, at the moment, I’m anticipating that I won’t have very much hair growth for the duration of my degree, because it will be a constant cycle of growing, exams, hair loss and then gradual growing again. And I reckon that’s what it’ll be like for the next three years. Which I’ve been thinking about really since doing my GCSEs because my dermatologist said, ‘Well, I think, I don’t think we’re going to need to do treatment, because it’s growing back, but just so that we can actually like map it out, you know, you have got five consecutive years now, two of A Levels, three of degree, where you have exams every year. So don’t get your hopes too high’ [laughs].
And how about afterwards?
Afterwards? I’m hoping really that I will just have a generic pattern of just regrowth. I’m hoping that will stop and that my alopecia will affectively disappear. But, who knows, I may decide to continue doing like a PhD or doing other exams. But I’m hoping that it only stays as an exam trigger and I’m kind of hoping it doesn’t develop to something else [laughs].
Being in school with alopecia
A big concern for many young people was about ‘fitting in’ at school. Some felt wearing a hat, bandana or scarf, or having a bald head, made them stand out. Styling hair to carefully cover patches and wearing a wig or scarf could make it difficult to take part in school activities such as sports, plays and non-uniform days. Not being able to join in with the latest hair styles or having to wear a cap for swimming when no one else did made them feel different to their peers. Annie X found every day a struggle when she was in Year Seven and the beginning of Year Eight. She would try and make herself sick on Sundays so that she didn’t have to go into school the next day.
Kayla explains the challenges of not wanting to go swimming at school and college.
Kayla explains the challenges of not wanting to go swimming at school and college.
Age at interview: 20
Sex: Female
Age at diagnosis: 4
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Some of the teachers like ‘cos obviously the principal and stuff would be-, we would tell before when I came to a school or something but generally, they don’t think about and they don’t really, like they would say, “Oh, when you go swimming, just wear a swimming cap.” And it’s like but nobody else wears one. I’d rather just not, you know. So it was just kind of like, I guess, because they were adults and now looking back, now I know it wasn’t like-, now I have this outlook, that it’s not a big deal but, when you’re a kid, it is. It’s like, it is a big deal. And it is kids, like they don’t, they can be so harsh and kind of thing. So yeah [laughs].
Yeah. With swimming at school, was it to do with like other people or was it also to do with like getting your hair wet and sort of things like that?
Yes.
And having to tie it back?
It was definitely like the whole day kind of thing. So like, if I had swimming in the morning, then my hair was wet and then dried wrong or something like it was a whole day thing, like if I have to do swimming. Then yeah, obviously, in the pool and then out the pool drying my hair like everyone would just be like [gestures hair drying] and like they would dry it how they want or they would tie it up in towels and stuff but I just couldn’t, like it was just like [facial expression]. So I’d generally try not to go under or something if I could avoid it and or I would just always ‘forget’ my togs [laughs].
So things like that, so, it was kind of annoying like in college I’d take, I, I like sports so I took like sports science classes and things like that but, when it came to summertime and it was like swimming sports, it was kind of like, “Oh, just wish I could skip this part.” And when I got, as I got older, less of the, less, like I’d tell, told the teachers less so it kind of was like they thought I was just didn’t care about their class or something but it really was just like I just don’t wanna tell you, like I just don’t wanna do it [laughs].
Grace had days when her hair wouldn’t sit the way she wanted it to. She says she would have a ‘teenage strop’ and not want to go to school.
Grace had days when her hair wouldn’t sit the way she wanted it to. She says she would have a ‘teenage strop’ and not want to go to school.
Age at interview: 18
Sex: Female
Age at diagnosis: 10
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Yeah, it kind of was the time consuming and it was kind of like, if it didn’t sit where I wanted it to. Before I went to school I'd feel so like…I'd probably have like a teenage strop in my bedroom, like, "Ah I don’t want to go to school because this" I'm almost I'm having a bad hair day, but it was kind of a constant bad hair day that I kind of had to maintain. But I think, yeah the time consuming aspect of it, having to like wash it, even though obviously I do still shower. But like, the having to wash it and kind of look after it, and definitely the maintenance of trying to cover it and stuff was very much a big part of it.
Danny says there are more people at his secondary school who also have alopecia than at primary school.
Danny says there are more people at his secondary school who also have alopecia than at primary school.
Age at interview: 14
Sex: Male
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When you were at primary school, there was no-one else who had alopecia?
No.
Is that different now you’re at secondary school?
Yeah.
Why’s that?
‘Cos there’s a few more people who have it.
And do you ever say hi to them or-?
Yeah.
Yeah, and do you talk to them about what it’s like for them at school with alopecia?
No.
Some people had experienced bullying at school. Other children could be unkind, picking out their differences or spreading rumours about them. Grace knew some children in her school talked about her “behind her back”, saying that she had cancer.
Annie X was given the nickname ‘grannie’ because she wore a bandana and felt very self-conscious about people commenting on her hair at school.
Annie X was given the nickname ‘grannie’ because she wore a bandana and felt very self-conscious about people commenting on her hair at school.
Age at interview: 15
Sex: Female
Age at diagnosis: 11
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I used to get excited about little things like because I had to wear a plain brown or plain blue bandana at school, because that was the uniform. But I used to get excited when it was like ‘mufti days’, which are non-uniform days, because I got to wear coloured ones. And that would just be something for me, because I would be like, this is a change. Then other people would be like, “Why is she wearing a coloured one? That’s weird”. And I remember when I first took my bandana off I remember hearing people whisper about sort of how weird my hair looked and like someone said, someone said I looked weird, but I heard them. And also I remember, my nickname is, Annie – and I remember when it first started this girl in the class came up to me and she was like, “You know you have a bald patch on your head, don’t you?” and I was like, “Yeah”. She was like, “That’s like a grandma”. And then I came in the next day and in front of my name on my locker was, ‘G R’ so it’s spelt ‘Grannie’, which was just, so I sort of walked into school because it was literally two days after my mum had found the bald patch. I was really, really, really self-conscious of it and more self-conscious than I’ve ever been about it. Just to come in and see that was just horrible. So, people don’t really, because obviously it was just a joke, but people don’t understand how much it affects you when you are that vulnerable to other peoples’ opinions.
When a rumour went around school that Rosie had leukaemia, it hit her hard for the first few days. But it dissipated and she “got over it quite quickly”.
When a rumour went around school that Rosie had leukaemia, it hit her hard for the first few days. But it dissipated and she “got over it quite quickly”.
Age at interview: 18
Sex: Female
Age at diagnosis: 12
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Our year was split into sort of two halves in the school and I know for a fact that a rumour got sent round in the other half that I had leukaemia, which hit me quite hard, because obviously I had a certain couple of friends from that half of the school that said, “I’ve heard this. I don’t think it’s true, do you want me to sort of clarify it with people” and I thought, well, ‘Half of these, the people that are spreading all this don’t know me and they don’t know what I’m going through’ or it could be worse, admittedly you know, I could have something like cancer, which is, even, you know, in every way more devastating than alopecia was for me. But it’s still was quite tough to sort of go home and say to my mum, ‘Oh, people think that I’ve got cancer.’ Which was quite weird to adjust to.
How did you deal with that situation in the end?
It very quickly sort of dissipated, as soon as the class had started to mix, because from the second year of secondary school, the class had started sort of going into sets and higher, lower. So you started mingling with people from the other half and people started actually correcting the rumours, saying, “Well, actually no, that’s wrong.” So it’s just sort of dissipated by itself. The only sort of, I was gonna say, I only really felt affected by that in the sort of first couple of days once I found out. Sort of going round seeing people in my year thinking, ‘is it you that thinks I’ve got cancer? Do you know that I’ve got alopecia?’ You know, sort of going round thinking, what’re all these people thinking of me. But after that, it just kinda vanished and I got over it quite quickly.
Some people said they were grateful for the support they received from teachers, but others felt more could be done in their schools to stop bullying.
Imogen was verbally bullied and feels she didn’t get the help she needed from her school.
Imogen was verbally bullied and feels she didn’t get the help she needed from her school.
Age at interview: 17
Sex: Female
Age at diagnosis: 7
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Well referring back to the person who bullied me, she, once she found out about my alopecia she would, she bullied me even more and that made my alopecia become worse to the point where I just had two strands of hair either side, and I would always have to wash my hair every day so it would stay in that position, you know. I would get mocked all the time by her and her friends that I had a big forehead because obviously when my alopecia fell out the first time my hairline grew back a lot further than before. I got bullied about that a lot which really affected me. But looking back on it now I feel like I wasn’t one of those people that didn’t ask for help like off teachers and stuff for like bullying. But I just didn’t get the help I needed. And I feel like a lot of people speak out about the situation that they’re going through don’t get the help needed, and I feel like that’s something the school system needs to work on.
Annie Y thinks her school told everyone about alopecia in an assembly. She has never had any issues at school and her friends are quite protective over her.
Annie Y thinks her school told everyone about alopecia in an assembly. She has never had any issues at school and her friends are quite protective over her.
Age at interview: 23
Sex: Female
Age at diagnosis: 3
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When I was like eight, I moved schools and it was just a bit like explaining to people, Yeah but when you’re like eight, people, like kids are just like really curious I think. So, I can’t, I just can't remember, but I think that they maybe did like an assembly where they like told everybody. Like, "This is what she's got." And then I was at that school for like absolutely ages, like all the way through. And then I just never really-, I guess I started wearing a wig at like-, I went to a girl's school at an age where you like start hanging out with boys and you're like maybe a bit more like conscious of what you like. But, yeah, I didn’t haven’t any issues at school like at all. Like it wasn’t like I got bullied or anything. Like if anything like everyone was just so nice about it, and all my friends just-, I think they were quite protective I think. If anybody asked them then they were just a bit sort of like, "Why? It's not your business, why are you so interested?" and then I never really had to deal with any of it; I never really heard about anything. I just didn’t really have any problems at school.
Laurel’s school has on the whole been very good about her wearing headbands and headscarves, but on one occasion a teacher commented that her headband did not fit with the school uniform rules.
Laurel’s school has on the whole been very good about her wearing headbands and headscarves, but on one occasion a teacher commented that her headband did not fit with the school uniform rules.
Age at interview: 17
Sex: Female
Age at diagnosis: 15
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I’m in the last year at school.
Ok.
And well actually there was this really big thing that when I was wearing my headbands, we were all having the vote for the first Head Girl. And my school is really strict and quite pathetic on their school uniform actually. And one teacher actually made a comment, “I don’t think she should be Head Girl because of that headband. What’s that fashion statement all about?” And this, this was so bad like-, this really upset me, and my mum and dad were so angry about it like they actually wanted to go down to the school because a headband shouldn’t hinder anything. And there was the, like the teacher that’s kinda head of pupil support and she sent an e-mail around and I think they kinda retracted the comment and felt really bad but I just thought that that’s not a kind of comment that you make as a teacher.
It’s not-, it’s not a fashion statement. I don’t think I’d be wearing that as a like a fashion statement if I had the choice. Yeah. But apart from that, like the school’s been really good. Everybody at school knows now and they’re all, they’re all fine about it. And like the teachers were good about not letting me, not having to take part in PE because I’d have to get changed and then it would come off and-. It was big because that was before everybody knew and they were all really fine, like supportive about that. And then when I was wearing my headscarves and stuff like after this e-mail went around and this comment and stuff, that-, it was ok. Everybody was understanding and quite a lot of people came up to me like, “I had no idea, Laurel,” well, I never told anybody so of course they never had any idea. But it’s ok now like nobody mentions it anymore cos it’s kind of over and done with. Still the odd people that kinda ask me questions but I’m ok with that as I’d rather…
Returning from holidays and moving schools
Transition periods and returning after school holidays could be important times. Rosie remembers coming back after the summer holidays when her hair started falling out and thinking it must have been quite a “shock” for everyone to see all her hair had gone. She thought that her class were “really nice about it” and just “curious”.
When Ben shaved his head and put a picture online, he was overwhelmed by the positive response he received and the support from his peers at school.
When Ben shaved his head and put a picture online, he was overwhelmed by the positive response he received and the support from his peers at school.
Age at interview: 18
Sex: Male
Age at diagnosis: 14
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So over the summer holidays, I came back and I had no hair. I had to like do this year of, you know, speeches and things like that. But when I shaved it, I was almost like-. That was probably the-, nervous, before I walked in the hall that day I was- I could really feel myself going cos obviously it was big reveal type of thing unintentionally. But once you’ve done things like that, I just think nothing else really matters if that makes sense.
And what was everybody at your school’s response?
Very supportive. I mean I, well act-, when I first did it I put a picture online with my friends and I got-. I was overwhelmed to be honest. I didn’t real-, I didn’t expect the amount of people to be as supportive. I didn’t think that they’d be mean but I didn’t expect so many people to be like really kind of gathered and you know, like sent me respect, stuff like that. You know, it was just quite-, it was just very nice. So I just kind of felt like everyone was behind me with that. I’m quite lucky like that I think because I think sometimes if you don’t have that and some people might not have that – it can really affect you. But I definitely feel like the support I had at my school and stuff was really- and my family and everything was really helpful.
Some people had moved schools, either because they wanted to or if their family had moved to a new place. Kayla says moving to a new secondary school let her "start afresh". The transition between primary and secondary school was another period of change that some people spoke about. Many felt there was more focus on looks at secondary school, sixth form and college which could make them worry about their appearance and being judged. Annie X goes to an all-girls secondary school and thinks there’s a lot of emphasis there on hair styling. Ben says he started to care more about his appearance in sixth form and became more interested in having relationships.
Elizabeth talks about a time when she faced bullying in school. She became more confident as she grew older, but then found herself becoming self-conscious again as she moved into secondary school.
Elizabeth talks about a time when she faced bullying in school. She became more confident as she grew older, but then found herself becoming self-conscious again as she moved into secondary school.
Age at interview: 20
Sex: Female
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Bullying definitely was related to it when it became visible. I remember once in a History class as people were lining up to go outside and I was just finishing my piece of work, one of the boys in my class actually coloured in one of my bald patches. Yeah [laugh]. it’s just like name calling what kids do really, but confidence wise – I think my confidence is a lot better than it was, this time last year it was a lot better than it is now though. But when I was ten I was extremely confident, extremely outgoing and then partly because of alopecia, partly because of what secondary school does, by the end of Year 7 I was a completely different person – my confidence-, I was-, at school I was one of the quietist kids there, outside of school I was a completely different person, I was loud, I was outgoing, I got into trouble – but in school I was [gestures quote marks] ‘the perfect pupil’.
Why did you think that happened around that age?
I don’t know. I think it was, there was a lot of new people, a lot of people that hadn’t grown up with me having episodes-, well they knew about it when-, I think some of my friends knew about it when I was seven and only about it-, and only a small group of friends knew about it when I was ten and I think it was it became visible when I moved up to secondary. So I became more self-conscious because I was, I was going into the awkward years [laugh] and school kids are mean.
University life
Starting university could involve meeting lots of people for the first time and could mean increased pressure to socialise. Worrying about the impact of alopecia on appearance and physical comfort could become a constant preoccupation for some people. This includes concerns about how best to style their hair to cover patches and whether to wear a hat or wig to lectures. Some people talked about the time and energy it took trying to get their hair ‘right’ and Emily says she can sometimes “work myself up a little bit about it”. It could also be a practical issue. For example, some people worried that if it was windy on their way to classes their styled hair could become ruffled, revealing bald patches, and wearing a wig in a warm lecture hall or seminar room could be uncomfortable.
When all of Emma’s hair came out in her second year at university, she worried that she wouldn’t fit in any more.
When all of Emma’s hair came out in her second year at university, she worried that she wouldn’t fit in any more.
Age at interview: 23
Sex: Female
Age at diagnosis: 14
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I think like university’s a time when you just sort of, you find who you are as a person. Which sounds really hippy and whatnot. But I just think you, you do, cos you’re away from home, you're finding your independence, you’re sort of meeting new people, you’re in different, more difficult situations. And I think how you look is very important cos it’s first impressions. And I think my first year, as I say, I had hair. And it was a little bit like, it was a bit, a little bit annoying because it was just, you know, it, my alopecia was there but it wasn’t affecting me to the point that I w-, didn’t have any hair. But, so I was still really outgoing and whatnot. And then my second year, when it all came out, as I say, it just, you just feel like all your, your friends are like, who are pretty and stuff. You don’t fit in any more. And you just feel like they’re not gonna like you because, I think it’s just a really deluded perception of like what you think they’re gonna think. When they’re not. They’ve been really supportive. But I think you just put this big, sort of your hair is everything like for a girl. And, you know, I think I just felt like it made university really stressful at times. And, you know, it’s just, it’s a bit more difficult than it had to be. Like I’m not mean d-, people that s-, don’t have more diff-, you know, far from, far worse things than alopecia and stuff. But it’s something that’s affecting you and it just makes your life a little bit more difficult than it should be and what your friends are.
Starting university and moving into halls made a big difference for Beth. It could be difficult to get the privacy to relax without her wig on.
Starting university and moving into halls made a big difference for Beth. It could be difficult to get the privacy to relax without her wig on.
Age at interview: 24
Sex: Female
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I was really lucky to have a tight set of girls. They’re all really fine about it. They don't-, yeah. It's the same, like everybody has their issues. They all had bits that was wrong with them, or family and stuff, so. Yeah, that way it was quite comfy to have. Cos there's only, what, five of us or so. So they all knew, like if we have sleepovers or whatever, take it off and just like oh, rub my head [laughs], that kind of thing. Like they were fine. And really, really good about it. University was a lot harder. Coming into halls, that was just like a whole new ballgame. Because obviously everybody- just things like you'd come in- it would be the same actually when you're living in houses afterwards. Like I always like to feel comfy. So when I come through the door, usually I just- the first thing that comes off is like probably my hair. It just gets chucked anywhere [laughs], half the time. With uni, you couldn't. So in halls especially, when it was new people that you were coming across, you had to kind of keep it on all the time. And then my only kind of respite as such from it was when I was in the shower. And that was like-, and then straight back on with it. Cos obviously everyone has their doors open, you're walking in between. If someone walked into my room and was like, "Beth, why is your room locked?" It's just like, 'oh, I just wanted ten minutes without my hair on.' Or something like that. So that way it's like- it gets in the way a bit. But again, you just can’t let it. So, and it’s the thing of like going abroad as well, the heat difference. I'd always choose like where I go on holiday and who I go with, I think about it more because it is a worry. Obviously you try not to, but if I was to go like to New Zealand when it was really, really hot, I'd really struggle. My dad lived out in the Philippines, I wouldn't be able to wear any hair at all with that, because of the humidity and it is just so hot all the time. Which weirdly my hair kind of started growing back, when I was out there. But I'm not sure if it was like the humidity and the heat or something, I'm not really sure. But yeah, you did notice a lot of difference in growth then. But yeah, I couldn't wear my hair. So now, I do want to go travelling. But I'd probably avoid-, or choose really like be quite picky about who I go with because you've gotta be like, “Oh, hang on, let me just put my hair on to take a picture.” [Laugh]. And then I take it back off again [laugh]. So, yeah. But they must cope with it, so. I don't know how [laughs]. But they must do.
For those who wore wigs, living in shared housing or halls of residence could make it more difficult to relax without their wig on, as well as wash and dry their wigs. This was particularly a concern if their housemates did not know about their alopecia.
Many found starting university was a welcome change. Meghan says her school and sixth form had been "cliquey", but that university was totally different in a good way. Many liked that they had a wider circle of people around them to choose to be friends with. Being amongst people who were a bit older could also mean that people were more understanding and knowledgeable about alopecia. A few people found that their friends and housemates at university had known of a person their age with alopecia before, and so they had some understanding already.
Michael finds his peers at university seem to know what alopecia is.
Michael finds his peers at university seem to know what alopecia is.
Age at interview: 19
Sex: Male
Age at diagnosis: 13
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I think since coming to university I've met a lot of new people and they all seem to know what alopecia is. Like if they ask me why I've got no hair and I say, “Alopecia,” someone else will say, “Oh yeah, I know someone with alopecia.” Or just like someone famous, like…
Jonjo Shelvey, who used to play for Liverpool football, with alopecia, comments. Which, I don't care, really. It's nothing. So a lot of people know what alopecia is and it's not really frowned upon, but some people who don't know what alopecia is, since seeing as I've got a shaved head, seem to think I might be a bit scary or something. But I'm not [laugh].
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