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Alopecia (young people)

Overview of physical appearance and alopecia

Many people spoke about changes in their physical appearance when they had alopecia. Most people talked about the impact of alopecia on the scalp, but some also mentioned hair loss on other parts of the body. The people we talked to had different approaches to their appearance. Some people choose to cover bald patches, including by using hairspray, hair extensions, bandanas, head scarves, hats, caps, wigs, make-up and semi-permanent make-up (e.g. eyebrow tattoos). Others opt to leave areas of hair loss visible or to shave their heads.
 

Meghan wore a bandana to cover patches of hair loss.

Meghan wore a bandana to cover patches of hair loss.

Age at interview: 20
Sex: Female
Age at diagnosis: 10
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And you mentioned before about sort of covering patches with different hair styles, could you tell me a bit about that? 

Yeah because mine was on the side and the back I always had my hair down and then depending on where the patches were I’d just change my side parting but now I probably have about this much hair along the front here.

So that’s why I have a bandana to keep everything in place. But  yeah, I’m I know, my one of my mum’s friends has a tiny like five pee patch of alopecia all she does is just keep her hair tied up all day. 

It is just finding what, what hides it best for you and that’s manageable every day. Like for me all I have to do is brush my hair, straighten it and put it in a bandana and that’s so much easier than going through wearing like eight pieces of extensions which pull on your hair, then having to style it every day like that’s, that’s what I used to do. But now I’m. I’m totally comfortable just wearing something like a bandana or a head scarf.
 

When his hair first started falling out, Ben used a coloured hairspray to cover up small patches on his scalp. The spray could stain furniture and so he had to be careful going to friends’ houses.

When his hair first started falling out, Ben used a coloured hairspray to cover up small patches on his scalp. The spray could stain furniture and so he had to be careful going to friends’ houses.

Age at interview: 18
Sex: Male
Age at diagnosis: 14
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The hairspray stuff I said I used to use with the brown-, brown in it. I used to be care-, I used to have to be careful with that because the brown used to come off on like furniture. And I felt like I was very conscious about when I went around to other people’s houses or my girlfriend’s house I used to like not lean on stuff properly. I used to either put my hand down here to stop like it actually making contact or-. I do forget that because it seems a long time ago but I used to really be concerned about that and like not lean back on things quite a lot because it was quite difficult.

How often would you use the sort of hairspray?

I think it was for a few months, maybe from, I don’t know, April maybe. Not, not this April, the April before and it used, I used to kinda put that on the back of my head every morning cos when I did my hair I used to put gel on my hair. Cos I just, just liked to sweep it on my face, I didn’t like spike it up but I kinda like sweeped it over. I did the hair just to spray at the back because that’s where the two ones were there and that was pretty obvious. And they, it was rea-, it was really good that, like if you looked you, you wouldn’t have known. And I used to do that, yeah, once a day. It was, it was horrible stuff though. It was sticky and it used to smell. It used to stain anything it touched, you’d have to be quite careful and do it in the shower like not- not stand in the shower and do it, you know [laugh].
 

Emily talks about her decision to shave her hair.

Emily talks about her decision to shave her hair.

Age at interview: 20
Sex: Female
Age at diagnosis: 19
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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.
Managing hair loss and regrowth

The first symptom of alopecia was often a small area of hair loss, although for a few people there was complete hair loss within a short space of time. Ben lost his hair over 6 months and felt “weird” seeing himself “instantly with no hair”, but says he got used to it “pretty quick”. 

Many found small areas of hair loss on their heads were not too noticeable. Emily says because “I had long hair, it was really easy to hide it”. If more patches developed or became bigger, covering them became more challenging and some found it quite stressful. Regrowth can also be uneven and hard to manage, especially when new hair is thinner or curlier than before. Becky’s hair grows back quickly as patches of fine baby hair but then falls out when it gets to a certain length. The uneven length of her hair makes styling difficult and she says, “It’s always got random bits growing and some bits longer than the others”.
 

Ben talks about his experiences with alopecia from when he had his first patch at age 14.

Ben talks about his experiences with alopecia from when he had his first patch at age 14.

Age at interview: 18
Sex: Male
Age at diagnosis: 14
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I first had my like my first bald spot when I was 14, about the size of an apple on the back of my head. I didn’t really think much of it. I was quite young. I just thought it was temporary. It will be fine, you know, nothing to worry about. Six months later, it grew back. And a couple of years later when I was 16 I had-, it came back again and I thought ‘oh’, you know, ‘no problem’. And that time it just gradually got bigger. I just covered it up, you know, combed my hair across it, you know, just a bit-, no one really noticed. And then probably I started sixth form, I got like two smaller ones on the top of my head and I thought ‘oh no’. I was more worried about it but I was still saying, you know, “It’s fine,” type of thing. And gradually over that year they got bigger and bigger and they- then they met in the middle and that was really hard. I had, I had like a big spot at the back of my head for ages and I used to wear a hat a lot. And that was the most difficult time I think. I felt like I had to wear a hat because, you know, it was quite hard walking around and I felt like people were staring. People used to look because it used to look a bit odd. And then when I-, in November last year, so almost a year ago now, I lost about-, I had about 50% hair loss on my head. So I decided to shave it all off. I felt much better after I shaved it off like it was liberating I guess, you know. It was just quite nice and it was just I had to do a speech at school the next day, completely forgot about that when I shaved my head. So I had to go in and like in front of the school and I had just my shaved head. It was just almost quite nice because everyone saw the new me in one go and it was just like, I took control of it rather than it controlling me. And then from that obviously I had little like stubble but that gradually disappeared by February.
 

Imogen has patches of alopecia. She prefers to shave her head and wear a ‘hair piece’ (wig) because the patches are difficult to cover.

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Imogen has patches of alopecia. She prefers to shave her head and wear a ‘hair piece’ (wig) because the patches are difficult to cover.

Age at interview: 17
Sex: Female
Age at diagnosis: 7
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I’ve got alopecia areata and the difference between the two: alopecia universalis is basically you lose all your hair and alopecia areata you just lose parts of it. So I know to this day I have alopecia areata but I’ve just got bald patches over my head, but I just choose to shave it and wear a hair piece and cos it’s easier than going into the wind outside and all of it [laughs] you know flying about, and people can see it.
Most people worried about small areas of hair loss being visible if their hair got wet (such as when they went swimming or in the rain) or ruffled. Meghan says she will sometimes “freak out about going outside on a windy day”. When Kayla had a job in hospitality, she was asked to tie her hair back and felt self conscious about her alopecia showing. Wearing a wig meant she could tie her hair back more easily. Elizabeth used to wear a scarf around her neck to tuck her hair in so that it wouldn’t get blown about by the wind.

Many people we talked to used wigs and found this helped them ‘fit in’. As Rosie explained, “it’s just wig on, eyebrows on, out the door”. For some, it also gave them more confidence. You can read more about people’s experiences with wigs here.
 

Arti finds it easier to talk to people about her alopecia now that she wears a wig.

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Arti finds it easier to talk to people about her alopecia now that she wears a wig.

Age at interview: 22
Sex: Female
Age at diagnosis: 22
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I was finding social situations very difficult because I didn’t want to see anyone and didn’t want anyone to know about it sort of thing so. I think I did sort of get sort of social anxiety which did affect like my studies because I didn’t want to go to lectures. And didn’t want to see people at all and didn’t want to see my friends which was probably a bad thing cos, you know, they could probably have supported me. So yeah, but thankfully I think when I started getting used to the wig a bit more, that sort of disappeared a bit.

I probably should have talked to more people about it I think in hindsight because- I don’t know what my fear was about telling people, about letting people know, like close friends and things, but I didn’t tell them. And I tried to sort of hide it from them which is why I sort of saw them less and-. I think if I had told them then they probably would have been really supportive.

I’ve told quite a few more people now. I think it was after I started wearing full wigs or was wearing my partial wig that I started letting people know. I think maybe that I was hiding under something which made me feel more comfortable sort of talking about it which is again quite strange cos, I don’t know. It’s strange that hiding behind it can give you more confidence [laugh]. But yeah I’ve told quite a few more people. Some, some of my closer friends now and there are more people who know. And actually when I told them, they were more shocked than anything else. They hadn’t realised what was happening at all. And they hadn’t heard anything about the condition and sort of asking questions and just quite interested and, yeah, a bit sorry that I hadn’t told them earlier [laugh] cos they would have liked to know and could have helped me a bit more.
A few people preferred not to wear wigs or hats and to keep their heads as they were with alopecia. Sometimes this meant that patches were visible or their scalp was fully bald. For a few people, shaving their hair off completely took away the pressure of having to manage and worry about hair loss. Michael, Ben and Emily all found shaving their heads was a way of taking back some control over what was happening with their hair loss. Ben often moisturises his scalp and likes it when people compliment him on how soft his skin is.

Appearance and identity

Appearance was especially important for some people when they were teenagers and young adults. Many said losing their hair had a knock-on effect for how they thought about themselves. For some, there was a period of adjusting to their hair loss and how they viewed themselves. Hannah sees being young as “your prime time of doing your hair and going out and getting your hair done”. Ben says he didn’t care that much about his appearance when he was 14, but that it mattered more to him when he was 17. When Emily shaved her hair off because of alopecia, she thought “how do I express myself now?” A few people had noticed that others perceived them differently than before if they had a shaved head or were wearing coloured wigs.
 

Michael thinks that people see him differently with a shaved head.

Michael thinks that people see him differently with a shaved head.

Age at interview: 19
Sex: Male
Age at diagnosis: 13
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Yeah, I think I appear older than I am. When I've, when I'm on a night out, and I look maybe a bit rougher than I am, as well. Saying that [laugh] having a shaved head's rough, but some people seem to suggest that it is. Or it may be. Because I look almost quite hard, at times, compared to the young boyish hair look that I previously had, so. But obviously speaking to people has made them realise that it's not the case, and think- don't know. They acknowledge that I am different, or I look different, but- almost quirky. Some people don't even realise that it's alopecia, they think it's a fashion statement or a choice of my own, and that it looks good in their opinions.
A few people spoke about having previously enjoyed dyeing their hair different colours and re-designing their style as an important part of their identity. Alopecia could make this more challenging and styling hair took time and energy. Some people felt very self-conscious about going out and worried that despite efforts put into styling their hair to cover patches, they might still show. A few people worried that dyeing or styling their hair a lot might damage the remaining hair. Others, like Hannah, tried out new hairstyles and colours as a way of coping with their hair loss as it was happening. She says that she “had fun with it… I’ve had a Mohican before and I’ve had pink hair and blonde and red”. For Hannah, these are not hairstyles she would have considered before but trying them out was a way to “find the positives in what’s happened… it makes you explore and have more fun”.
 

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].
 

Having different coloured hair was Laurel’s ‘favourite thing’. When she had to cover her hair with hairbands due to hair loss, she didn’t feel pretty any more.

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Having different coloured hair was Laurel’s ‘favourite thing’. When she had to cover her hair with hairbands due to hair loss, she didn’t feel pretty any more.

Age at interview: 17
Sex: Female
Age at diagnosis: 15
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Well basically my hair used to be my favourite thing ever. I’ve had every single colour of hair. I’ve had green. I’ve had pink. I’ve had blue. And it was my favourite thing I’d do is dye my hair because everybody knows me as having mental hair. That’s one of the things that everybody says to me is like, “What colour have you not had?” And it was really hard cos at the time I had pink hair and I was like I don’t want this to fall out because this is really cool. And it just-, it fell out but I still continued to dye it cos I still wanted to feel like me. And then when I had to be with the hairbands and have my hair up all the time you just, I just didn’t want to go out cos you don’t feel as pretty when your hair is always up. It’s one of those things that it kind of makes your face look different and it’s-. You can do different things with it. But when I got my wigs and stuff, it did make you feel a lot better cos it made you feel really like-, you look pretty again.
For some people, wearing wigs was a way to ‘stand out’ and experiment with different looks. Compared to dyeing hair, wigs were sometimes seen as a quick and easy way to try out different styles, colours and looks, which could be fun. Emily likes to wear one on nights out which is “a lovely blue wig … all mermaidy”.
 

Beth keeps two wigs, one with curly hair and one with straight, so she can vary her look without making it obvious that she has a wig on.

Beth keeps two wigs, one with curly hair and one with straight, so she can vary her look without making it obvious that she has a wig on.

Age at interview: 24
Sex: Female
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I like longer curly ones. My hair naturally was really, really curly. So I find it really weird with wearing straight ones. But it's quite nice to be able to have like two at the same time that are similar, so you can be like 'I'm going to straighten my hair today.' And like no one knows any different. If you have like fringes, it kind of takes the thing away of having the line [points to scalp]. Because obviously sometimes it can be- if I pulled this all back, it would be really obvious that it's a wig. Or to me, it would be, some people not so m- don't pick up on it at all, but. Yeah. So yeah, a fringe tends to look better as well. Obviously they're quite full, so most people just think- and when you get them, they're really shiny as well, so most people think like 'oh my god, she's got really good hair.' Or straight away ‘it's fake’. It's like things like lighting can make a big difference as well, so if you're in a really highly lit place and it's really shiny.
A few people felt alopecia could be harder for women because of the stereotype of women having long hair, whereas baldness was more accepted as part of the male pattern of aging. Rosie said she mostly wears a wig because “it is such an oddity to see a woman walking around without hair”. Laurel said, “When you’re a girl, you want to have your hair all pretty and I didn’t have that”.
 

Emma initially felt less feminine when she shaved her head.

Emma initially felt less feminine when she shaved her head.

Age at interview: 23
Sex: Female
Age at diagnosis: 14
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But speaking as a girl, I think you spend your life looking at all these beautiful like princesses and, you know, celebrities on telly that have got these long, luscious locks. And you just, and I think, well, having long, luscious locks, I used to have really long hair. Like I’ve always been used to being around, you know, having really nice hair. It’s finishing off your look really. And being around friends that have got, you know, nice hair. You just sort of associate like femininity with having thick, long hair and, you know, like you can swish around and whatnot. And like losing that you just, I just felt like, initially I just feel like ‘well, I’m not like a woman any more’. You just, you just don’t feel that you fit in to being like a, a girl. And it’s just harder to sort of match your outfits, you know. Like, you know, like nothing looked right bald. And looking at yourself in the mirror, like where do you finish your make-up? Cos I’ve got like a full face. Like it’s just little things like that.
 

Although women are often thought to be more body conscious, Becky thinks hair loss is hard for men too.

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Although women are often thought to be more body conscious, Becky thinks hair loss is hard for men too.

Age at interview: 23
Sex: Female
Age at diagnosis: 14
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Obviously, I’m gonna be biased that I’m gonna be on the female side of it. But then I can imagine, for males, it to be-, I mean, it’s a horrible thing to live with anyway. But for both you’ve got different sides of it. So a female might be more bothered about her appearance, so it might get her down easier. But on the flip side of that, a male’s got short hair. So it could be a lot more noticeable. So, I can-, you can’t say which one it’s worse for because, as I say, a male’s got short hair and you could see it a lot easier and it’s easier for them to get upset about it. Whereas a female has long hair and well, typically has long hair and can cover it. But they maybe a lot more body conscious and self conscious about it. And especially media for young girls. You don’t see anybody in magazines with patches-, bald patches on their hair, you don’t. Everybody in magazines got beautiful hair and you want beautiful hair like massive curly hair or your hair up in a really-, I mean I’ve never had extensions because I’m petrified of clipping stuff in my hair. I’m petrified of putting glue in my hair. It’s not something I’ve ever done. So I can see how it is awful for both. And I don’t think you can say it’s worse for one than the other. But I can’t imagine it to be nice for males with short hair because they only need to lose a tiny bit and you can see it, with it being shorter. 
 

Michael thinks that girls have more opportunity to wear wigs and look more natural with drawn on eyebrows.

Michael thinks that girls have more opportunity to wear wigs and look more natural with drawn on eyebrows.

Age at interview: 19
Sex: Male
Age at diagnosis: 13
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People, some people seem to think that it's more difficult for girls to have alopecia, which I feel it is sometimes. But girls have the opportunity for wigs more, more readily than males. So it's almost impossible for us to hide. But I'm quite accepting of it now, so it's not as much of an issue any more.

Why do you think it is that maybe females have the option of wigs more so than males?

The majority of wigs seem to be for long hair. And females in general seem to have longer hair. And also in terms of eyebrows as well, it's easier for women to draw on eyebrows than it is for men, in terms of make-up and things like that, so. It's, it's easier for them to make it look more natural than it would be for a male's eyebrows.
Clothes, make-up and styling

For some, it was not just about the hair that had fallen out or which was regrowing but also other aspects of their appearance which were affected by alopecia. Laurel thinks head hair makes a big difference to how a person’s face looks. Some people changed their clothing and make-up style to fit with different wigs.

People were often aware of ‘standing out’ with alopecia and some felt they had to pay more attention to how they looked generally because of it. This could mean drawing attention away from their hair loss and onto other aspects of their appearance. Laurel says she put on more foundation, got new ear piercings and used eyelash extensions because this “distracts the attention away” from her alopecia. Annie X experimented with artistic make-up. However, others tried to avoid drawing attention to themselves. Krista says she dressed in black and grey because she “wanted to look bland so nobody noticed” her. 

Clothing could become especially important after a diagnosis of alopecia for those who were already image conscious and enjoyed expressing themselves through self-styling. Emily says she spent more on clothing after developing alopecia. She changed her clothing style: “I felt like I had to wear a lot kind of more punkish clothes”.
 

Hannah talks about changing her style and her ‘look’ and matching it with one of her wigs.

Hannah talks about changing her style and her ‘look’ and matching it with one of her wigs.

Age at interview: 21
Sex: Female
Age at diagnosis: 16
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I change my style a lot depending on my hair, so sometimes, like if I wear my really crazy wig, my pink, blue and like purple wig, I’ll have more of a kind of bright, bubbly look and like sometimes I’ll look more sophisticated if I wear just a brown one, like wig, so I do kind of – I do style my look according to my hair sometimes. So, I’ll y’know, depending on what-, I did that today, depending on what I was wearing, I was like, ‘okay, so what wig would look good or do I just go with my short hair?’ And y’know, so, yeah, I change my look according. 

Is that like make-up and jewellery as well as clothes or is it the- 

Yeah.

whole thing? Yeah?

It’s make-up as well, make-up kind of, I’ll style, depends, so, if I have really dark hair, I might wanna go through like, kind of heavier like eye make-up look and everything. And yeah, I just change it.
 

For Emilie, who has had alopecia since she was 6, clothing has always been very important.

For Emilie, who has had alopecia since she was 6, clothing has always been very important.

Age at interview: 18
Sex: Female
Age at diagnosis: 4
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But identity wise I wear a lot of wacky clothing, I love velvet and tweed and tartan and [coughs] stuff like that. I shop a lot of charity shops, I like to bargain hunt and vintage, vintage is just, [inhales] I love vintage, anything vintage and retro I have a lot of big padded jackets and stuff like that and bomber jackets and all sorts of things and creepers and Doc Martins, so many Doc Martins.

[Laughs]

I think clothing for me is very important it, it just is a part of me and a lot of people don’t understand that – that I feel like it’s a way of me showing how I like to [gestures] design myself if that makes sense cos I can’t design myself with hair I do it through clothing. When it comes to make-up all I wear is eyeliner and mascara – I don’t, I know there’s a lot of women out there that’s got alopecia universalis who obviously have no eyelashes, eyebrows and they wear fake eyelashes they draw on their eyebrows, you know, they put a lot of foundation on, I don’t, I just put on mascara and eyeliner, I can’t be bothered with foundation, it’s not good for my skin. My eyebrows, I’ve tried drawing them in, I look like a monster [laughs].

How come?

I came in, into the living room and showed my brother and he went “No, no, take that off.” But yeah, I don’t bother with makeup.
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