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Alopecia (young people)

Impacts of alopecia on exercise, social life and hobbies

Alopecia could affect many aspects of a person’s life, including their social life, exercise and hobbies. Sometimes this was for practical reasons, such as maintaining a hairstyle that covered up areas where their hair had fallen out or wearing a wig, hat or scarf could interfere with certain sports and hobbies. Losing self-confidence and dealing with the emotional side of alopecia could also have a big impact on some people’s social lives and activities. A few people talked about times when they didn’t want to go out of the house.

Exercise and sports

Many people who did not want others to know about their hair loss said doing sports and exercise could be difficult. Exercise, including going to the gym, often meant sweating and patches of hair loss could become more visible as the hair became damp or moved. Michael gave up playing football and rugby as he worried about bald patches being “on show”. For those with long hair, tying it up also made it harder to conceal patches and some avoided sport activities altogether which needed them to tie up their hair or have it in a particular style. Some people wore wigs but these could become less secure when they were active and sweating. Beth would love to do yoga but worries that her wig might fall off with some of the poses. Kayla gave up Zumba classes because the adhesive under her wig would get damp and lose its stickiness. She now only does dance that is “not too physical”. 

A few people said they don’t go swimming in a pool or the sea because the patches of baldness are more visible when their hair is wet. Hannah didn’t go swimming for three years because she didn’t feel comfortable about revealing her hair loss.
 

Kayla explains the challenges of not wanting to go swimming at school and college.

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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].
 
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When Rochelle was boxing at the gym, she thought her wig might come off but says she doesn’t “take it too seriously”.

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Age at interview: 23
Sex: Female
Age at diagnosis: 14
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Yeh so since last week, two weeks ago, I went into the gym before I’d cut my hair with my hair curly and this guy, yeh, I went into the gym with my hair curly which was natural, it’s fine because I kind of hid, it was up in a pineapple and it had curls coming down so it looked really nice, so I wasn’t bothered about it then. But last week, no, like yesterday, I went to the gym and I was doing boxing with my friend and I was like ‘please do not make my wig come off’ and when I put my headphones in I’m like ‘oh my gosh’ but I don’t take it too seriously. Like other people would be like ‘oh my gosh’ but I’m just not really worried about it at all but if it does like, oh my God, if it fell off and you’d see my big doody plaits and I’m gonna be like ‘ahhhhh’ but no it doesn’t bother me really much at all. But it’s only the time I went into the gym and my hair was straight so you could kind of see that there’s a bit of hair loss around there, so that’s when I was like ‘ohh my gosh’. And I sent a picture to my partner but he was just like, “It’s growing back,” and I just got on with what I had to do at the gym. So yeh, it doesn’t bother me.
Some people continued with sports and talked about dealing as positively as they could with stigma when their hair loss became visible. Ben has always played rugby and his team are now “quite supportive” about his alopecia, but he sometimes make jokes about his baldness and lets them tease him about it.
 

Hannah recently started doing gymnastics and felt she had “no choice but to go bald” from her first lesson. Although it was tough to take that step, it has made it easier.

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Age at interview: 21
Sex: Female
Age at diagnosis: 16
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I started gymnastics recently. I haven’t been for a while, but I had to decide that I was-, I had no choice but to go bald the first time I went because I thought that was the best way to get round it, because I couldn’t wear anything on my head, because as soon as I’d do any kind of flip or anything, my hair would come off, or my hat would come off and-, or I’d get too hot. So I had to push myself out there and just be like ‘okay, I’m bald’ and go. And then that made it easier, cos then I didn’t have to worry about the next time I went. Even if I wore a headscarf, cos they knew I didn’t have hair under there. So yeah, things like that. But then, it took a lot of building up to get to, get myself to actually go without a wig, so. Yeah.

What was it like? What was the actual experience like of going?

It was fine. They didn’t say anything. No-one said anything. No-one seemed to care, y’know. I mentioned a little bit about not having hair. [Whispers/talking to dog - She’s kicking the sofa]. I mentioned a bit about not having hair just like in a joke or something and that was it. It was just a casual thing. So again, it was that thing where it builds up bigger in your mind than it actually is. 
 
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Grace found wearing her wig to the gym was uncomfortable. She often wears a headscarf instead and finds some people stare at her.

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Age at interview: 18
Sex: Female
Age at diagnosis: 10
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I don’t wear my wig to the gym. I did for the first cos I went to-, I joined a new gym, so I did for the first couple of sessions, but it was just so uncomfortable. I was like ‘this isn't even worth it’ and I think people wear like-, so I wear like a kind of headscarf kind of thing, people you can buy them on holiday; the type of thing that have like ties on the back to stop children getting sunstroke; but not like a swimming cap, but it's kind of like a cottony material, and I wear those to the gym cos it's kind of breathable. But people wear kind of headscarves and headbands and all sorts of things to the gym anyway, so I feel like- people kind of give me a first glance, kind of like ‘ooh, oh OK, like she obviously doesn’t have any hair’ and then people tend to not stare. But I find that I'm quite a confident person anyway, so if somebody did stare at me, I'd kind of be like, “Are you OK? Can I help you with anything? Can you kind of stop looking at me?” I wouldn’t be that abrupt, I'm not that confident, but I'd kind of be like, “Are you OK? Are you trying to get my attention?” kind of thing because-. And then they're kind of like, “Oh no, sorry, aah,” because they don’t really know what to say, and you're kind of like, “Well just leave me alone.” But there are days where it does get so frustrating cos you're just kind of like-, say specially at the gym so people kind of look at you, and you just think 'I just want one day off, I just want to come to the gym and I just want to be- and I just want to exercise, I don’t want anyone to look at me, and I don’t-' yeah, that kind of thing, I'm just like ‘aw’. 
Socialising

Most people were very aware of other people noticing their hair loss or felt that they stood out in social situations because they often wore a hat, scarf or wig. Elizabeth says she was “so scared of what people might think”. Annie X “didn’t like people looking at me or making assumptions about me”. Alopecia could affect a person’s social life and self-esteem because they worried about what others would think and how they would react if wigs or carefully placed hair moved out of place. The things that other young people took for granted could make them anxious, such as going on school trips, going out to a bar or house party, joining friends on holiday, wearing a bike helmet or even just going outside on a windy day.
 

Ben talks about his experience of people asking him about his alopecia.

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Age at interview: 18
Sex: Male
Age at diagnosis: 14
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I think some people are quite interested. I when I meet new people obviously people are too polite to just bring it up straight away but I usually get- well, drunk people ask or some people who, you know, ask after I’ve known them like maybe a little bit longer than just like a first meeting. But they usually ask, usually ask-. Some people don’t know what alopecia is. They ask why-, some people ask have I shaved it? A lot of people say that on nights out maybe it’s like, “Have you-?” like, “No,” “Do you bother to shave your head or just-?” I’d say, “No,” you know, “it’s-.” Sometimes it depends how talkative they are cos I can explain what it is or if they’re so like out of it, I can go, “No, it’s just natural,” or something. But usually, yeah, the most- most question is, “Will it ever grow back?” “Can I touch your head?” is also a big one. I don’t mind that at all. I can see why some people would mind that but I don’t mind. So it’s fine. What else? That’s the main two to be honest. I mean people- people- most people here at this university know what alopecia is which is quite good. Back home not many people really knew like they were familiar but like I talk to my flatmates – some-, they all kind of know people, of people who have it. So it’s much nicer for me not having to really explain it to everyone. 
 

Hannah’s alopecia has been mistaken for the side effects of cancer treatment. She’s had situations where other people have opened up to her but also times when it has been awkward.

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Age at interview: 21
Sex: Female
Age at diagnosis: 16
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Yeah, I’ve had a lot of like misunderstandings of people thinking I have cancer and stuff and. When I was on holiday I had a couple of people come up to me and y’know thinking I had cancer and they’d had cancer and they were really, really nice and positive, because I’d bought, I’d just walked around for the first time in four years since losing my hair, it was the first week I’d gone without covering my head once. I’d never gone week without not covering my head. And I just didn’t really mind and I just did my own thing and two people came up to me and it really stood out to me that it was two difference experiences. One person, I then said, y’know, ‘oh no, actually I have alopecia’ and he was like ‘oh yeah, I used to have alopecia blah, blah, blah’. And we really got on and spoke about it and it was easier to talk to him, cos he understood. The other person, when he questioned me and said that he’d gone through cancer, it made me feel quite bad and awkward, because [laughs] he made me feel quite bad and awkward, because when I said it was alopecia, he kind of had a blank look on his face like he didn’t know what it was, so he didn’t know how to answer. And the conversation just kind of stopped and it was really awkward, because even when I explained what alopecia was, it was almost like he felt tricked by me, because he thought it was cancer. And obviously then I felt really bad, because I didn’t wanna like miscon-, like anyone to kind of get the wrong message or anything, so, yeah. But I’ve never had like too much of a negative reaction in person. I have online, but I think people find it easier to kind of be a bit more harsh online than they do in person. 
 

Emily had an experience of meeting someone new who wanted to touch her hair and asked her boyfriend for permission.

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Age at interview: 20
Sex: Female
Age at diagnosis: 19
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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.
Some people worried that others would comment on their appearance. This sometimes stopped them from doing social activities. Annie X never went to parties, as she “didn’t really feel comfortable enough in myself to go out”, and because of this people stopped inviting her. Having alopecia could also affect how people dressed and used make-up.
 

For Meghan, going out can feel like “a personal battle” and she sometimes feels she can’t go out because of the weather or her hair not being “right”.

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Age at interview: 20
Sex: Female
Age at diagnosis: 10
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Say if it’s like eight o’clock at night, should we go out for a drink? And there’s the whole getting, we’re getting ready thing. And when I want to go out like say we’ll go out drinking or to a pub or on a date or something, I have my extensions in because I feel more comfortable and I don’t have to worry about like moving too fast or someone like seeing it on a night out when they’re drunk and saying something. So it does take a lot, it does take a fair bit for me to go outside, like some days I just don’t feel OK like with being outside like in whether it’s the weather or what I’m doing or like if something has gone right. If my hair hasn’t gone right then I just, I can’t, I just can’t do it. 

But that’s just something that I, it’s a personal battle that I have to get over. But with, to do with friends though I’ll always go and see my friends like in a closed environment, but when it’s when we’re outside in public that’s when I do start to get quite worried, like it does take me a lot, a lot of time to get ready. 

Yeah.

To be OK with leaving. 
 

Social anxiety made going out in the evening difficult for Arti.

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Age at interview: 22
Sex: Female
Age at diagnosis: 22
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Like as an example, I know, so I said a little bit about my social anxiety – that sort of developed. There have been times that like I’ve been arranging my hair, so when I was sort of arranging my hair properly in front of the mirror sort of thing. There were times when I was arranging my hair for like literally an hour and a half, two hours, just doing it again and again and again and again. Sort of getting late to see friends and then I’d be like I don’t want to go see friends. So there was a time, specific time when I was with my boyfriend and we were about to go see friends. And we were already an hour late cos I was arranging my hair and he kept texting them being like, “Oh well, we’re going to come soon” type of thing and then I was just like, I threw a strop being like, “I don’t want to go, just go without me, whatever.” And then I got quite angry at him and I know, I apologised to him afterwards but I got quite-, I think I was just taking out my frustration of my hair out on him which I think is very easy to do [laughs] when you’ve, just getting really annoyed and you can’t really blame your hair cos you can’t [laugh]. So yeah. So I did get angry at my boyfriend and, bless him he took it really well and he was, [laugh] he was okay with it all and sort of very supportive and [laugh] yeah [laugh]. But obviously I wish like I didn’t do that kind of stuff but it is good to have my boyfriend around to help me with it. 
However, most people had close friends who they felt comfortable socialising with. Some felt confident in themselves and tried not to let other people’s reactions affect them. A few said their alopecia didn’t affect their social life and they treated changing their hairstyle or wearing wigs as part of their getting ready and dressing up routine.

Social media

Many of the people we spoke to were active on social media sites. Sharing photos on social media sites like Instagram and Facebook could create some anxieties and involve unwanted attention. People often didn’t have control over the photos of themselves that other people posted, although they could sometimes ‘un-tag’ themselves. Annie X closed down her Facebook account as she felt it was too easy to compare herself to others and this had a negative impact on her self-esteem.
 

Hannah was upset when someone commented on her Facebook page about changes in her appearance.

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Age at interview: 21
Sex: Female
Age at diagnosis: 16
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I was on it was my photos on Facebook and I hadn’t like-, I didn’t have all my photos private. And  this guy out of nowhere, just started commenting, ‘why have you done this to your hair? You looked really beautiful with your lovely long hair’ and commented on about five or six of my photos. And then he was like, ‘you’re such an idiot and blah, blah, blah, and shaving it’. And he just jumped to the gun thinking that I’d shaved my head and someone else had commented, a different person saying, ‘oh, the things you do nowadays for fashion’. And again it was that, it was that like, it wasn’t just judging someone, it was criticising them before you even kind of make the right judgement. You just criticise straight away and obviously then, I was just like, ‘you need to educate yourself’, y’know, blah, blah, blah. But y’know some people reacted well and some didn’t. One of the people just didn’t get the message. And so I had a couple of people having to talk to them because they just wouldn’t leave me alone. They just wouldn’t stop commenting and obviously I said it didn’t bother me, but it actually really affected my confidence. And the next week or so, I wouldn’t-, I didn’t upload any more photos. All my photos were private. I didn’t go out without a wig. And I was just y’know more conscious of what other people could actually be thinking, cos that was a real person doing that, it was a real person writing that. So that kind of brought it more, y’know, like real to me. It made it more real.
A few people talked about the positive role that social media could have as a platform for raising awareness about alopecia. When Laurel shaved her head for charity and posted it on Facebook, she received supportive messages from people she didn’t even know very well and raised over £2,000. Social media was also used by some people to connect to others with alopecia to share information and support.
 
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Although she often covers her head, Grace allowed her friends to share pictures of her at a festival without her wig on. The photos went on her Facebook profile and she got a positive response when she used them for Alopecia Awareness Week.

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Age at interview: 18
Sex: Female
Age at diagnosis: 10
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I think it was mainly after Reading and stuff, so obviously there were going to be pictures of me without my wig on. So, I was like, 'OK I kind of need to prep this; I need to kind of see what's, what do I want on there.' People asked me, they were like, "Oh yeah do you want us to tag you in them? Do you want it on your Facebook?" And I was like, "Do you know what, just go for it, because it is a part of me and that’s what you express on there don’t you, it's you?" However much or however little you want to express I suppose, but yeah, I think that’s really important. And then I ended up putting… so during Reading I put on the back of my head, 'I'm bald, let me through,' or something like that. So, someone took a picture of that on a disposable and I now have that as my header, so as my top image. So, anyone who goes onto my Facebook or anything will be able to see that whether they're friends with me or not, they're going to know unless they think it's like a trendy image or whatever. But and then in the in September it's Alopecia Awareness Month, so for that I put, as my picture, I think it was like four pictures of me, like various from Reading, from holiday, like pictures I'd taken of myself or whatever, in this collage with the 'September is Alopecia Awareness Month,' and that got like over a hundred likes, like that’s quite a lot for me, that’s…people were liking it because I think, I've had a lot of positive feedback about it as well, about the way that I handle it, especially on social networking sites. 
 

Emily thinks children and young people with alopecia aren’t representing themselves enough through social media.

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Age at interview: 20
Sex: Female
Age at diagnosis: 19
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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.
Hobbies 

Some people felt quite limited in the kinds of activities they could participate in. A few people talked about how joining in with friends who wanted to go camping or try new experiences (like bungee-jumping or scuba-diving) could be tricky. Some worried about how people would react to seeing their hair loss, for example if their wig came off or they chose not to wear one. The burden of having to explain their hair loss to others, or risk standing out because of their hair loss, could be emotionally draining. The impact of alopecia on self-confidence made hobbies that involved performing on stage particularly challenging for some young people.
 

Beth talks about the challenges of joining in with activities like scuba diving.

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Age at interview: 24
Sex: Female
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It is [sigh], it is very emotional. You-, I tend to go in different waves with it. So at the moment I'm fine with it, and just live with it. I always say, "If anything pops up and they say ‘oh you're not doing it because of your hair’." That annoys me. So I'm like, "Fine, I'll have to do it." So like say, "Oh yeah, you're not gonna bungee-jump." Then if I attribute it, I'm not doing it because of my hair. Does that make sense?

Mmhm, mmhm.

Because I had it with like scuba diving. I went out to Australia, and I was just like ‘I really don't want to get on a boat full of people, with no hair on. And obviously my hair's up in a locker somewhere, who anyone can get to it’. Yeah. So it's all them panics, that kind of you get quite anxious about it. You do feel kind of- cos everyone just looks at you and thinks ‘oh gosh, what's wrong with her?’ [Laugh] straight away. So yeah, it's not- it's not very nice at all. But the actual- yeah. It just- yeah, so that- but then from that bad experience, usually I come out of it feeling really good. Cos it's like ‘actually I did that and it didn't bother me’. So you kind of have to tackle them bad bits.
 

Kayla talks about not being able to join in with dancing and netball, which she would have loved to do.

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Age at interview: 20
Sex: Female
Age at diagnosis: 4
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Has it impacted on any sort of hobbies that you do like any other activities you’d like, you like doing?

Well, I would of, I used to do ballet and so I would of loved to have carried on dancing and things like that but, when it comes to exams and shows and stuff, you’ve got to tie your hair back or you’ve got to get dressed up and I don’t wanna be the one who everyone has to change their hairstyle, you know, everyone wants the matching hairstyle. I don’t wanna have to like be the one that’s like not matching or make everyone be different.

So I mean the first time I kind of took a chance was at that at that stage challenge and then luckily, that got sorted but the next year, I was just like a backstage prop. I was just like ‘I can’t do that again’. Especially, because like what if I can’t do the style that they want? What if they want a bun or what if they want, you know, so it was like one of those things, it was just like I can’t do it. I just won’t do it. So yeah, I would’ve loved to have like done dancing or I used to do netball and then tying my hair up got too much of a thing ‘cos there’s actually rules and you have to tie your hair up and I was just like, yeah, I guess it, like it limited me in that in that way, yeah.

I mean it’s not like a big deal now. It’s not like I was gonna be a professional netball player or anything but it’s just like when you like something, you wanna do it and I couldn’t. And also those kind of thing, you make friends through so it was kind of like, it was unfair that all these people would go to games and stuff after school and I was just like going home and. Feeling sorry for myself, as you do when you’re young, so it was kind of like, yeah. But I’ve never really let it affect my personality I don’t think, like I’ve always been happy so it’s just in the back of my mind, I’ve always been like damn it I wish I could do that. But you get over it, yeah.
 

Having alopecia really knocked Annie X’s confidence and the thought of performing stopped her from doing dance, which she loved.

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Age at interview: 15
Sex: Female
Age at diagnosis: 11
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And then I had to quit dance. I used to really, really, really love dance. I used to do it for five hours on a Saturday morning, which was three classes. And I had to quit just because I didn't feel confident any more and obviously when you’re dancing you have to be confident in yourself and like portray yourself as being confident. But because I was like really sort of in myself, I couldn't do that any more. I just, I stopped enjoying it so I quit that. Which, obviously now, I am really annoyed about, but then I couldn't think of any other option. But I started dance up again now but I still do it with private lessons, so one-to-one, because I still can’t perform in front of people. And then I quit guitar just because I felt like I could never perform, so I would never play in front of people just because I didn't think I was good enough. And obviously if you’re playing an instrument, people are watching you play the instrument. So, yeah. It’s been a bit of a shame, because I enjoyed both of them a lot. But yeah, I didn't really feel that there was another option. 
Despite some challenges, 
hobbies remained an important part of enjoying life and having fun for young people with alopecia. Michael found doing the Duke of Edinburgh awards helped develop his confidence. Elizabeth says playing the guitar and singing help with her confidence and are outlets for her emotions.
 

Doing drama allows Emilie to ‘funnel’ her emotions through the characters she plays.

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Age at interview: 18
Sex: Female
Age at diagnosis: 4
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But there were loads of options and opportunities that I had at school to do anything that I wanted, as in, to project my feeling-, especially in drama I’d say in drama, anytime I felt insecure or angry or something, I’d funnel that through into another character especially when it came to school productions. So this year we did Little Shop of Horrors last year we did a film, a production called Chicago and I was lucky enough to get a main role in that. and it’s quite easy as well for drama because I don’t have to wear wigs but if I want to be a particular character I can wear a wig where a lot of people don’t have that luxury. Where they can’t go, ‘right, I’m this character so I need to cut my hair, I need to dye it blah blah blah, I need to do whatever’, whereas I can just go ‘right, I’m going to wear that wig [mimes quickly putting on a wig], done’. 
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