Alopecia can affect people's emotions as well as in their physical appearance. Ben said there can be many “ups and downs” of hair loss and regrowth. Some of the young people we talked to found it especially distressing when their hair first started falling out and they were looking for a diagnosis. Others said they weren’t too worried when they first had alopecia, especially if they had been diagnosed as a young child. Kayla was 4 when her hair loss started and feels it has been a part of her life for as long as she can remember. It wasn’t until a rumour was spread at Rosie’s school about her having cancer that she started to feel self-conscious about her appearance. Those who had been living with alopecia for a while often felt it became easier to live with and some people found ways to feel more confident and accepting of their hair loss. Hannah has had alopecia for 5 years and feels “it was a massive acceptance journey”. A lot was said about the emotional side of living with alopecia in the context of family life, going to school and university, and having friendships and relationships.
Emma finds that telling people she is bald makes her feel more confident in herself.
Emma finds that telling people she is bald makes her feel more confident in herself.
Age at interview: 23
Sex: Female
Age at diagnosis: 14
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I’ve met a few people that, they’ve, who’ve had alopecia for about five years as well. They’re older though. And like nobody knows that they’ve got alopecia. I just think like, ‘How, how can you feel, how must you be feeling inside to keep that in?’ But I just think it must be really difficult cos you’re constantly hiding. Like, you know, you’re coming in and you’ve, you’ve got to quickly put your wig on and stuff. And it must be tiring. I’ve like said to people that I find it a lot easier just, just telling people I’m bald and whatnot. Just, and it just makes you a bit more confident about yourself. Cos, you know, I, I feel confident, you know, not wearing my wig now. Not confident like, I feel confident in that I’ve accepted it a bit. I’d feel confident in my, more, I’d feel more confident in my appearance if I had hair, just because you feel more feminine and whatnot
Professor Moss talks about where people can get emotional support.
Professor Moss talks about where people can get emotional support.
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I think as doctors we have to be careful not to just focus on the skin problem, on the scalp problem. And obviously it is a big problem, it's not just a little patch of hair loss that needs some cream, it's obviously a big problem to individuals and to way-, the way they perceive themselves, their self-image, the way other people perceive them. It can mean that they get bullied or teased at school. And so doctors-, I think we do have to remind ourselves that that emotional aspect is very important to patients. In terms of resources, there is a very good patient support group called Alopecia UK. And it does have an area for young people, HeadzUp. And so there are lots of resources there where people can find out more information, find out how other people have dealt with it. And I think I'm a great believer in patients comparing experiences, and the, there are things that other people have found in practical terms, living with the condition, that we don't know anything about. And so I do think it's very helpful to put people in touch with other people. Sometimes I see a child with alopecia and if I say to that child, “Have you ever met anyone else who's got this condition?” They'll say, “No,” and they think they're the only person in the world. So I think that putting people in touch with other people is very reassuring and it makes it feel more normal and it gives them an opportunity to talk about the problems in a way that they can't talk about it, to a health professional.
People said there were many different emotions they had experienced about alopecia, such as:
- shock
- fear
- sadness
- isolation
- anger and frustration
- low self-esteem and knocked confidence
- awkwardness and embarrassment
- anxiety, stress and panic
Emilie was angry as a child and would lose her temper if other children questioned her about her hair loss. She gained confidence after going to anger management classes and now sometimes jokes about her alopecia.
Emilie was angry as a child and would lose her temper if other children questioned her about her hair loss. She gained confidence after going to anger management classes and now sometimes jokes about her alopecia.
Age at interview: 18
Sex: Female
Age at diagnosis: 4
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I was a very angry child, anyone who would talk to me about it, anyone who would come up and, especially little kids because they don’t understand what’s going on, they’re very upright and, you know, “Why do you have no hair?” and things like that. So I used to lash out quite a lot and because of that I ended up getting anger management classes at a very young age to help me cope with it. Cos I used to wear coats that had hoods on and caps and things and I felt very uncomfortable in my own skin because I found it difficult to make friends because of what I was going through. But as I grew older and my friendship group matured, they accepted it perfectly okay and I accepted it and, yeah, it’s become me.
A lot of my primary school I’d make friends, lose friends, because they’d make a comment and I’d get very iffy about it and it just wouldn’t end well and mostly it would be my fault because of the way I handled it. But after I had these anger management classes and learnt how to cope and had techniques to use whilst in these kind of situations, I became very, very used to it and actually it brought me confidence. And then my friends saw that I was becoming more confident and they seemed to be more okay with it and people could then talk about it more freely, I wasn’t afraid to talk about it to people, they would make jokes about it basically, especially in high school. I actually made a few friends by making a joke. Yeah, I referred to myself as a celebrity at one point I looked like a particular celebrity and that’s how I made one of my friends on a bus, I just turned around and go, “Hey, I look like this person,” and they burst out laughing and I became friends with her and we’ve been friends ever since, so. It’s a good way to actually make friends as long as you joke about it and they know it’s okay and you’re not afraid to go forth with it basically.
Rochelle talks about feeling insecure and getting frustrated when people tried to give advice.
Rochelle talks about feeling insecure and getting frustrated when people tried to give advice.
Age at interview: 23
Sex: Female
Age at diagnosis: 14
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You feel insecure – especially in secondary school everyone’s getting into their prime, you know, going sixth form and that, so you do. You feel everyone else around you has got their hair, especially your Indian friends – everyone’s got hair [laughs], so you do feel insecure and everyone’s trying to help but then it’s not helping. So, “Oh, Rochelle, you know, Rochelle’s got this”, you know everyone’s talking, “oh, Rochelle’s got-“. So everyone is, there was more of people trying to help but it wasn’t helping at all. And sometimes I’d get frustrated when people told me to use this and I would tell them, “I’ve already used that” and I would start crying, especially my parents cos we’re a funny family so maybe they’d make little jokes and I’d just start crying.
Emotional responses to alopecia
The first signs of alopecia could be very difficult. Some people who were diagnosed when they were at secondary school or as a young adult described feeling panic, shock and worry about whether they would lose all of their hair and if it would grow back. Emily remembers how she “didn’t know what it meant – I thought ‘maybe I’m dying’”. Beth found it upsetting to see her hair fall out when she brushed or washed it. A few people described going through a “roller coaster of emotions” when they began to lose their hair and had to adjust to having more patches of baldness. Others who had been diagnosed at a young age said their alopecia didn’t have a big impact on them then. Grace says she was “blissfully unaware” at age 10 when she first started getting bald patches about what the implications could be.
Ben found it hard not having control over what was happening. Losing his hair has been an emotional journey of “ups and downs”.
Ben found it hard not having control over what was happening. Losing his hair has been an emotional journey of “ups and downs”.
Age at interview: 18
Sex: Male
Age at diagnosis: 14
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It’s a journey. I don’t think any one is the same. I think I did mention that in one of my blogs before is the fact that like, you know, no one has the same experience but it’s quite.- But I think there’s like a general pattern that you kinda-. There’s ups and downs. And I felt like at first it was down when I was first losing my hair before I shaved it. It was just down, down, down. There was no up-side to that whatsoever. After I shaved my head I’d say it made me feel better, a bit better and then I lost my eyebrows and it was down again. And I just think the emotional bit is the fact that you’re out of control and the fact that you can’t do it-. That’s, that, I think that’s what the hardest thing is. I think that’s the same when I talk to my counsellor before. It was the- I likened it to-, cos I was talking about grief, I was likening it to when I was- my nan was ill and it’s the fact that you’re out of control. You can’t do anything to help it and it’s a horrible thing happening, not saying it’s the same as someone dying, losing your hair, but it’s the same kind of feeling. You know, you can’t do anything to help. I think that’s what people don’t like. That’s the scar-, that’s a scary thing. And I felt like ever since, I mean in February and March when I start-, I started that group- not the start of the group, when I joined the group. I felt it’s just been up, up from there. I obviously have days or like when I get a little bit sad about it. I can’t-, I can’t lie and say, you know, I’m happy all the time. I do look at myself sometimes and think kinda wish that I looked a bit different. But I wouldn’t say that’s my overall outlook. I’d say, you know, I shouldn’t wish away- wish it away because I should make the most of it because I think I could have gone the other way and been like quite reclusive or, you know, not-. I could have just wanted to stay inside, not be as, you know, talkative I guess, I don’t know, I’m quite chatty [laughs]. But I feel like- I think, I think sometimes when you feel a bit-, you feel a bit lonely I guess and you kinda put that-, you kinda blame-. I think everyone feels lonely sometimes. I think I’m quick to put it down to alopecia and I think- but everyone has this. It’s not just you but you-, but you know what I mean, it’s almost your reason for every- like for everything straightaway. I have to remember it’s not, not at all. Like just talking about now, I’m saying things I haven’t actually thought about before so it’s quite nice, you know, talking about it.
Michael explains how difficult it was to see his hair falling out every day.
Michael explains how difficult it was to see his hair falling out every day.
Age at interview: 19
Sex: Male
Age at diagnosis: 13
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The hair loss off my head was the most difficult. And also my eyebrows. Waking up in the morning and seeing it on my pillow was just, it just made me not want to get up or get out of bed. And then having a shower, and seeing more, more hair, or you know, just going down your body and on your hands as you wash your hair was horrible. Because I couldn't do anything to prevent it at all. It was inevitable that it was going to happen, and I didn't know when it was going to happen.
I needed to wash my hair every morning, so I could move my hair to cover the patches. And that, even doing that would make me see the different hair loss. And every day it would be horrible, every morning. And it was almost every morning that there was hair loss. So it was almost became expected. But even so, it was still difficult to deal with. But then, but then once I shaved my head I didn't have to do that, deal with that any more. So it was, it made getting up much simpler.
Hannah struggled with not having her hair and losing control over that part of her appearance.
Hannah struggled with not having her hair and losing control over that part of her appearance.
Age at interview: 21
Sex: Female
Age at diagnosis: 16
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So then I noticed like a lot of things got worse. I had like struggles with my eating and my appearance and I noticed that and my family noticed that I would focus more on my appearance, my physical appearance, because I didn’t have my hair. So I’d try, I’d never feel like I looked good enough basically and I’d try losing weight or toning up and just because I didn’t have my hair and I didn’t have the control over that and I found something to control. And it makes sense now, but at the time it was just, y’know, I was lost in my own little world of not knowing what to do. But I lost the control of losing my hair and like I found something else to gain control over. But yeah, it can really affect people.
For those whose hair loss became more extensive, the experience could make them feel “out of control”. Some opted to shave their hair as a way to “take back control”. Others became more withdrawn and self-conscious, which could have a big impact on their social activities and relationships with friends and partners. Emma remembers crying “about six times a day” when her hair started falling out for a second time whilst she was at university.
When Krista first had alopecia, she was so “wrapped up” in what was happening to her that she felt she wasn’t there for her daughter.
When Krista first had alopecia, she was so “wrapped up” in what was happening to her that she felt she wasn’t there for her daughter.
Age at interview: 23
Sex: Female
Age at diagnosis: 22
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I was 22 when it happened, I’ve turned 23. And obviously with [daughter’s name], I feel like I missed out on those few months because I didn’t pay, I didn’t pay attention and it was when she was learning and learning to talk and learning to count and all sorts of things like that and. And I wasn’t paying attention. Cos I, I was too wrapped up in what was happening to me, obviously I still cared for her and did everything sort of did nappy changes bath times and all sorts of things like that but my head was never really in it I, and I felt like I never spent time with her because when I got up in the morning, like now morning times is, I don’t start work till 3 ‘o’ clock so morning times is mine and [daughter’s name]’s we play we go out go to play group. And now, and back then it was just literally I would get up and I would sit on the sofa and she’d be playing with her toys on the floor and I wasn’t playing with her because I was just too wrapped up in what was happening which was wrong. Which a part of me feels like I’d, not failed her but I feel like I just missed out on a lot of stuff that she was doing. And it was even little things like in the morning whilst, whilst we were having our breakfast I’d catch up on the soaps if I was working the night before and I even stopped watching that. Cos I was watching looking at all the women thinking look how beautiful you look with all your hair and I’ve got none, even down to watching telly is affected me watching telly, which was strange, it was so strange. Even [daughter’s name]’s kid’s programmes there was women on there with hair and I didn’t wanna look at them cos I didn’t have any which was strange. You don’t think it will affect just normal everyday things like watching the telly.
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.
Dealing with reactions from other people
Some people thought a lack of public awareness about alopecia areata meant that they faced an added burden of having to explain the condition to others. It was often assumed by others that the hair loss was caused by chemotherapy (a cancer treatment which can cause hair to fall out). Annie X was 11 when her parents found a patch of missing hair on her scalp and she was devastated at first because “the only association I had with going bald was cancer”. Explaining that this isn’t the case could make people feel embarrassed or annoyed.
Some people worried about going out and meeting new people because they weren’t sure how others would react to their hair loss or bald head. Grace finds other people sometimes tell her about their own (or a family member’s) experiences of cancer which feels “really awkward… I can’t tell you that I don’t have cancer now cos you’ve just opened up to me”. Sometimes other people made comments, stared or gave special treatment. Even if well-intentioned and there could be benefits to getting special treatment, young people with alopecia often felt “guilty” that others had misunderstood the reasons for their hair loss.
Emily finds other people sometimes assume that she is sick.
Emily finds other people sometimes assume that she is sick.
Age at interview: 20
Sex: Female
Age at diagnosis: 19
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I think it’s really difficult to explain to people I have an autoimmune disease ‘cos they’re like, “Oh no, do you want to have a lie down? Are you okay?” And it’s like, “No, like I feel perfectly fine, I’ve had blood tests, everything like I’m completely healthy.” But then I don’t have any hair and obviously when people see somebody without hair they assume they’re having chemotherapy so they, it’s something that you associate with people being very sick. And I think it’s quite interesting the way that you interact before when they assume that you’re sick, because you’re like, “Do you want me to do a cartwheel like to prove that I’m fine? Like is that going to make it better?” Like I have people offering me seats on the tube and like I feel bad ‘cos like I feel like it’s kind of fraudulent ‘cos I’m not, I’m not sick. Like I’m fine. But then you’re told that you have an autoimmune disease and it’s kind of difficult to like understand that you’re well but also that you have a disease that clearly affects you physically and visibly. And I think, I think that kind of thing needs to be explained to people that just because you have a disease doesn’t mean that you’re necessarily sick.
A rumour went round at school that Grace had cancer.
A rumour went round at school that Grace had cancer.
Age at interview: 18
Sex: Female
Age at diagnosis: 10
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The transition into secondary school – someone from my primary school had spread a rumour that I had cancer and that’s why I didn’t have any hair. So, that was quite a difficult one because you had to kind of overcome that and think that is such a nasty thing for someone to say.
How did you cope with that? What did you do or?
I think I didn’t really find out that they'd said this until probably like a year or two later because nobody had even questioned it with me. I think because it was we were so young and they wouldn’t want to like ask me about it, because I think you don’t really know anyone, but it wasn’t until later on when but they probably didn’t even know what they were saying; they're probably, that was probably a rumour that was going round at primary school that they kind of just brought into this new school. Like, oh yeah, as matter of fact, kind of, “Oh yeah, she had cancer,” because they weren't really educated about it.
However, lack of understanding about alopecia was more of a concern for some people than others. This could depend on how visible their hair loss was or how accepting people around them were.
Apart from one “tricky” time when she moved schools, Annie Y thinks she’s been “really lucky”. She wears a wig and has never really had any “bad experiences” or had anyone asking questions.
Apart from one “tricky” time when she moved schools, Annie Y thinks she’s been “really lucky”. She wears a wig and has never really had any “bad experiences” or had anyone asking questions.
Age at interview: 23
Sex: Female
Age at diagnosis: 3
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I moved schools when I was like 8. I remember that being like a bit tricky cos I had sort of-, I went to like a really small village school, and then I went to like a much bigger school, and it was like sort of explaining to people that I didn’t have cancer, that kind of thing. But I just think I'm really lucky; like I've never had any bad experiences, and like I've only ever had-, I've worn a wig since I was 14 and it looks really similar to the one I'm wearing now, and I've just never really had any issues. I just think either I know really nice people, and I've always known really nice people, or like people just are really understanding. Like I know that people-, I watch interviews all the time; watched one this week on, it's was like This Morning, and a little girl had gone on and she had alopecia and her grandma did, and they were talking about like the social stigma that they’d, she'd like lived with her whole life, and like I just really don’t feel like I've had that at all. Yeah obviously, I think my parents attitude towards it was like they treated it like not a problem, so I didn’t get any sympathy, and then, not like in a mean way [laughs], but so then I never really viewed it as this big problem, and so then nobody else really does in my life either, it's not really something I talk about very often, or that I ever needed to like get therapy or like. I never really get-, this is like the, a whole, the first time I've ever really talked about properly with anybody cos I've never really needed to. So, I've never really had any like really big problems growing up I don’t think, which is obviously I know people do but-, so I must just be quite lucky I think.
So you think it's partly to do with like your attitude towards it as well, and your family's attitude that-?
Yeah, maybe. But I also think-, yeah I think like something's only a problem if you make it a problem. And I've got-, I've just got really good friends and I think maybe they’ve just been-, I guess people would have asked them about it. I don’t really know. Like I've just never, nobody's ever sort of like directly asked me like, “Can you tell me about your hair?” People just aren't like that, I don’t think, and just out of respect that that just wouldn’t be the kind of thing to do and would let me tell them. And most of the time, like nobody even realises; like I know that most of my friends in [city name] have absolutely no idea, which is just funny, like that I can live with my two housemates who I'm such good friends with, and they have no idea. Like it is kind of funny. I am lucky in that I like, like the wigs I wear are like real hair so it is quite similar so people wouldn’t really notice, so I think that makes it a lot easier as well. So I don’t have to talk about it sort of.
Confidence and self-esteem
Many people felt that when you are young, there can be a lot of peer pressure to “fit in”. Annie X thinks that going to an all-girls secondary school means there is even more pressure on appearance and she feels she is “surrounded by people who are always tossing their hair around”. A few people who had alopecia in their childhood experienced bullying from other children or prejudice from teachers and tutors. This could have a big impact on their self-confidence and how they felt about their physical appearance.
Annie X feels very self-conscious. She describes a time when schoolboys pulled off her bandana and she was afraid of going out on her own.
Annie X feels very self-conscious. She describes a time when schoolboys pulled off her bandana and she was afraid of going out on her own.
Age at interview: 15
Sex: Female
Age at diagnosis: 11
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I sort of went into a shell and I remember when I did go out, I had sort of hide, sort of hide behind my parents, hide in shops, not really want to do anything. I always had to get the bus every day, which isn’t the big a deal. But when you feel like everyone is looking at you because you are weird, it’s especially hard. And I remember I was on the bus once and these two boys from another school came up to me and they pulled my bandana off. That was really, really difficult because then all these strange people on the bus have seen like my hair with missing patches and stuff. And so after that I was really scared to get the bus by myself. So I remember some days I would walk home if other people weren’t getting the bus and that’s a good 40 minute walk just to avoid the bus. And I am still scared of doing stuff by myself, I’m getting better though. But I still can’t walk from one end of [city] to the other without pretending to be on my phone, just in case people are looking at me, because I have this-, I’ve got it in my head that everyone’s always looking at me just because they did. And they can, they have the right to look, because normal 15 year olds don’t wear bandanas or don’t have hair that looks like a mushroom. But so I’ve got it in my head that people are always looking at me, which didn't help my self-consciousness at all. But, but I remember I used to sort of breakdown essentially. I used to have many breakdowns where I would just be like ‘I can’t be good at anything. I can’t build on from who I am until I am perfect as I am’. So I would be like, I can’t try and do this as a career and I had to quit dance and I had to quit guitar just because I didn't think I’d ever been good at anything again. And so people don’t really think it’s that a big a deal losing your hair, but the emotional side of it is, is really difficult.
Most people we spoke to had times when they were worried about being judged in some way because of their alopecia, which affected their self-confidence and self-esteem. There was a mix of experiences and some people’s self-confidence had been more affected than others. Emily found that people would look at her if she was wearing a hat, scarf or cheap wig, or at her shaved head if she wore nothing. Although she is “fine with it” most of the time, she says there are “days when you want attention and days when you don’t”. Krista’s hair regrew after several months of alopecia but the experience still has a big emotional impact on her as she says it is always a worry that it might happen again.
Many people said there came a point when they started to feel more comfortable in themselves and worried less about what other people might think of them. Beth described there being both “peaks and troughs” but that, overall, “you just learn to live with it”. Some thought growing older and having had alopecia for a while helped them accept it. Whereas children in school could be “quite harsh”, those who were older found adults were more accepting. Emma has had alopecia for 6 years and says “it’s something you gradually get used to.” Ben feels that having alopecia has ultimately helped him develop his personality more and made him a more confident person.
For Meghan, who is 20, being older has made a big difference.
For Meghan, who is 20, being older has made a big difference.
Age at interview: 20
Sex: Female
Age at diagnosis: 10
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At the beginning of secondary school, obviously that was very, very difficult ‘cos it’s, you’re in an awful situation anyway. Bullying is rife and people like new making new friends and stuff that was awful. And then as it got better and like I got more comfortable in school it was a lot easier. And then from being in sixth form to now, so the last 3, 4 years that’s been just so much easier ‘cos I am- I’m adult enough now to accept that it is, that is my life and it’s not and people like people my age now they don’t bully, like that’s not a thing like so I think I’m glad to have grown up and be OK with it now.
Grace is ‘open’ about her alopecia and has pictures on her Facebook pages where she is not wearing her wig. She has had positive feedback.
Grace is ‘open’ about her alopecia and has pictures on her Facebook pages where she is not wearing her wig. She has had positive feedback.
Age at interview: 18
Sex: Female
Age at diagnosis: 10
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So, I've had a lot of positive feedback about how open I am about it, because it's part of me, and I think you need to put that on there, cos there's so much in the like reported about how people put all these great things on there, like, “Oh yeah, now on holiday in Santorini and now I'm in up the Eiffel Tower with my boyfriend,” and I think you need to put on there what's actually happening, like people need to know that I don’t have any hair, because that’s part of me and that’s just how it works, that’s just who I am. So, I think, yeah, it definitely helped with telling people about the condition because it means I haven’t had to-, especially people from work, because it means that they’ve kind of seen it and there's enough on there for them to kind of get a gist about what it is, and if they wanted to look it up then they could; but not like so much that it's kind of overwhelming and like, “Oh yeah she's just writing about it all the time,” cos I don’t put it on there all the time. It's only the pictures really that are taken from events where I'm not wearing my wig, type of thing. But yeah, I think I'm pretty open about it.
In September, it's Alopecia Awareness Month so for that I put, as my picture, I think it was like 4 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 100 likes, like that’s quite a lot for me, 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.
Over time and with support, Grace has become more confident, despite her alopecia becoming more extensive. Wearing a wig was an important part of her growing confidence.
Over time and with support, Grace has become more confident, despite her alopecia becoming more extensive. Wearing a wig was an important part of her growing confidence.
Age at interview: 18
Sex: Female
Age at diagnosis: 10
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But I think it's weird because as I've lost more of my hair and I've been able to wear a wig, I've been less conscious of it, because I think I used to be so cos I used to have like backcomb my hair and then kind of hairspray it down to make sure that it was almost like a helmet. It was like a wig of my own hair to try and mask the appearance of the patches. But yeah, I’ve become more confident since I've got a wig which is really weird because it's more-. As my alopecia's got worse, I've got better with it. But I think that it's only because of the support network of my friends and having a long term boyfriend and stuff like that, that they’ve kind of helped me through it.
Although some people still struggled occasionally, many had positive experiences of adjusting with time and wanted to pass this message on to other young people with alopecia. Michael says he lost all his confidence when he started losing his hair at age 13 but is “quite accepting of it now” because “as I've got older and matured, I've realised it's not that important”. Many also expressed their appreciation towards supportive family members, friends and partners, as well as others met through alopecia support groups, who helped boost their confidence and self-esteem.
Emilie encourages young people with alopecia to have fun with their appearance and expressing their identity.
Emilie encourages young people with alopecia to have fun with their appearance and expressing their identity.
Age at interview: 18
Sex: Female
Age at diagnosis: 4
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Wear a wig if you are more comfortable in it but never be ashamed of what you actually look like because it is your body, what your opinion-, your opinion is the only one that matters nobody else’s does, okay. I went through many years of wearing, you know, different wigs and mostly hats and caps, find things that you love to do and see a way of funnelling that fear and that sadness into the thing that you love doing. It could be maths, it could be whatever, but for me, you know, performing and art and just doing things like that really helped me break out of that, you know, that zone, that fear. Just-, honestly as cheesy as it sounds be yourself, just be yourself and people will like you, you will have friends, you will find someone, everyone finds-, you know, anyone can find someone, you know, it’s-, I found someone. Didn’t think I would, I found someone. Just be yourself, really do. Cos the more you try to be like someone else, the more people aren’t gonna like you because they-they won’t know you. People like you if they actually know you and if you, you know, block them out, if you build a barrier and pretend to be someone else, you know, this person’s not really gonna know you, they’re just gonna know a façade that you’ve put on. I’d say at the beginning if you have alopecia now, if you’ve just started getting it – then wear wigs if you’re more comfortable with it, if you spent most of your life having hair, I feel like it’s easy for me to say because I spent so little of my time having hair, I was only, you know, four but say like if you’re in your 20s now or something and started losing hair and if you are more comfortable. But just remember, there are other styles other than hair, there are so many other styles, you can wear scarfs, anything you like, you can look so funky and so fresh, you know, doing your makeup, even glasses – I love wearing glasses, I have three pairs of glasses, they all make my face shape look different and it adds to my look you know. My advice would be: be yourself, dress the way you wanna dress, you know, wear what you wanna wear but just remember be yourself, don’t try becoming someone else. You know, if you’re gonna wear a wig to try and look like someone else or try and be someone else – don’t do it, don’t do it to yourself because you’re only gonna cause more harm.
As she has become older, Kayla has felt more “happy” in herself. She thinks the alopecia has made her who she is.
As she has become older, Kayla has felt more “happy” in herself. She thinks the alopecia has made her who she is.
Age at interview: 20
Sex: Female
Age at diagnosis: 4
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I feel like I’m, I don’t know how to explain it, I feel like as I’ve gotten older, I, I look back and I think I’m a better person because, well, not better person, but like I wouldn’t be who I was without it and I think like, ‘Oh if I had hair.’ This sounds stupid, like if I had hair, it’s actually, I would have-, I think I would have turned like ‘cos of the schools I went to and like things like that, like I changed schools, at one point, just because it was like everyone seemed to know and I wanted to like start afresh, and so there’s been a lot of occasions where I just wanted to start afresh. So I think the people I’ve met along the way, I don’t know, I think I just realised that, yeah, I’m me because of it. Even though, obviously, I’d like it to grow back – it’s kind of like I’m more than happy as I am like, yeah, I don’t know [laughs]. If that makes sense. Like it’s just hair. It’s not me, kind of thing.
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