Annie Y

Age at interview: 23

Age at diagnosis: 3

Brief Outline:

(Audio or text only clips) Annie Y has had alopecia totalis since she was 3. She has worn wigs since the age of 14 and finds that most people are unaware that she has the condition. Annie Y thinks it’s important to hear positive stories about living with alopecia and not just those focusing on stigma.

Background:

Annie Y is 23. She lives in rented accommodation with housemates. Her ethnic background is White British.

More about me...

Annie Y has had alopecia totalis since she was 3. Annie Y was seen by medical professionals when her hair first started to fall out in patches and then fully on her head. She took zinc tablets and had a steroid ointment for her scalp, but she doesn’t remember much about these medicines. Her eyebrows and eyelashes returned but the hair on her scalp never grew back. She thinks that the timing of developing alopecia was quite lucky because she didn’t feel bothered about it at that age and it is the way she has always remembered it being. She has not seen any doctors since because she doesn’t think there would be much point. She also has had eczema her whole life; it tends now to be worse in the winter months but finds it is mostly manageable with moisturisers. 

Annie Y found it a bit tricky moving schools when she was 8 years old. The other students had a lot of questions and so her school held an assembly to explain alopecia. Annie Y had good friends at school and, although she never heard of any comments being made about her, she is confident that her friends would have handled prying questions. Annie Y switched from bandanas to wigs when she was 14 years old, as this was a time when she started to feel a bit more conscious of her looks. She is grateful that her parents purchase real hair wigs for her as these look very natural, to the extent that most people are unaware that she has alopecia unless she tells them. Although these wigs are quite costly, Annie Y likes their quality and that she can choose how to have them cut as well as be able to wash and style them as normal. Annie Y finds that most people she has known from university onwards are unaware that she has alopecia because she wears wigs and doesn’t talk about it. She sleeps in a wig as her housemates are currently unaware but says that she wouldn’t mind telling them or co-workers, it’s just not something that she feels is necessary to bring up to talk about. 

Annie Y says that she has never encountered stigma for having alopecia, although she knows that other people with the condition have. She never viewed her lack of scalp hair as a big problem and she praises her parents for never treating her any differently because of it. She doesn’t feel a need to talk about it but she knows that she has people in her life who would listen if ever she did. Annie Y thinks it’s important for other young people with alopecia to know that it’s fine to talk about it but that it’s equally fine if they don’t feel the need to because it doesn’t have to be “a big deal”. She finds it refreshing to hear positive stories of living with the condition. Everyone she has ever told about her alopecia have been understanding. Annie Y explained that she doesn’t tell many people about her alopecia because it can detract from her as a whole person: she doesn’t want it to be a defining characteristic, as the ‘girl who wears a wig’, and prefers people get to know her first. 

Annie Y was three years old when her hair fell out and she was diagnosed with alopecia.

I think maybe I'm lucky that it fell out then because I probably had absolutely no idea what was happening and like didn’t really care. Like I don’t, I don’t think when you're three you would like, are aware of anything like that. And so I just, for as far as I can remember this is how it's been so, there wasn’t like-. I think it would be really tough if you were 15 and all your hair fell out because you know what it's like to not have it, and know what it's like to have it. Whereas I don’t really know what it was like to have it so I don’t-, I think that makes it a bit easier.

Annie Y’s eyebrows and eyelashes fell out when lost hair first but regrew. Part of one eyebrow fell out again a few years ago.

Has alopecia ever affected your eyebrows and eyelashes since then?

Yeah, really weirdly, like when I was in sixth form this bit of my eyebrow, from here to here, just fell out for like a year. It's fine cos I like used to draw it on like literally, and like people just do that don’t they now? But it was really weird. I don’t know why that happened and it was like-, sometimes like this, I don’t get very many eyelashes just on the bottom, but no, I haven’t. Apart from that, just that one like tiny bit of eyebrow falling out for a bit. They’ve been fine since which like I'm really like grateful for cos I think that makes quite a big difference to like to not looking like you have alopecia, it's like having them, having eyelashes and eyebrows on your face.

Annie Y doesn’t know what triggered her alopecia when she was age 3.

What have been your main sources of information about what alopecia is?

I guess my parents. So, what they were told at the time. I think they definitely felt that there wasn’t very much research into it, and I know that they, it was like a really horrible time for them because obviously they're really sad that it happened, but one of the things that they got asked was like what their marriage was like because they were worried, the doctors were like, "Is this child really stressed? Is that why all her hair's fallen out?" Obviously like their marriage was fine and I think that was really like tough for them. 

But yeah, so I just know what they knew at the time, and then maybe I've like Googled it at some point but not really; like I've never taken the time to like look it up really.

So with the doctors thinking that stress may have been a factor, is that them trying to work out what could have started, triggered alopecia-?

Yeah but I think, I don’t think, I mean I don’t think you can be stressed when you're three, I just think… And I can't have been stressed my whole life since as well so I really don’t think that’s what it is. But I think that’s just like one of the reasons that it does happen to some people, so.

Mm, yeah. Do you know why there could have been a trigger for you or is it just completely unknown?

Completely unknown, yeah, from what I'm aware.

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.

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.

Annie Y compares her experience of buying a real hair wig with the NHS wig she had in school.

I'm really lucky cos my parents can afford to pay for real hair wigs which is like a bit of a luxury cos wigs on the NHS are like synthetic and really horrible and like not nice to wear. But we found this guy who's like ab-, it's absolutely amazing. He's just a hairdresser but he gets in these, a wig like this and it'll just be like all long hair, like not cut, and I go and I just tell him how I want it cut. So it just like comes like this, all like, it's all like real hair. And then so I can, it's like I can pick whatever I want it to look like, and obviously, as you can tell, I just kind of generally try and get hair that looks like other people's hair, like bog standard sort. You don’t want to like-, if you're trying to like blend in you don’t really want to have like a crazy hairstyle. But yeah, it's really nice. They last for like between six months and a year and I, yeah, it's just really like manageable. You like just wash it completely normally and like hair-dry it and use straighteners, and it feels exactly like normal hair and, especially having the hair cut, I think like if you buy wigs from shops or like on the NHS they're already cut into styles and they look a bit like wigs, if that makes sense. Whereas, cos I just get it cut like a normal person has a haircut it, again I think it just makes it less obvious. Which is like a massive luxury that I get to do that, cos it's not like cheap.

Have you, like prior to this did you look into like the NHS wig schemes?

Yeah I think my mum always tells the story where, when I was younger, maybe when I got diagnosed, no, maybe when I was like a little older, I had this like wig from the NHS and then I just like went to school in it, and then like brought it home in a plastic bag at the end of the day cos they're just like really horrible and itchy and like really uncomfortable. And then I think, I think I just wore bandanas all the way through. I think I just got a bit curious about it, and then we, we sort of went to this place in London that, that is kind of similar to the one I have now but just like outrageously expensive. But we didn’t know cos we didn’t-, there's not very much of like, you're just Googling, like it's like hard to know like where to go, what to do. And then we realised that you didn’t have to pay that much money for them, like that was a thousands of pounds. And then we found this guy and I've been going to him like literally ever since I got one wig there, and then I've only ever been to him.

Annie Y’s flatmates don’t know she has alopecia. Although she says it wouldn’t be a big deal if they knew, it does mean that she sleeps in her wig more often.

Yeah I guess the only thing that is like an issue is that I don’t really like sleeping in it, but then I will-, like in the house I'm in at the moment – I've lived there since January with one of my like really, really good friends – and I don’t-, I can't like lock my door. So, when I was at uni I used to just lock my door and then like not sleep in my wig. But I find that more and more I've kind of like slept in it or things like that. So, yeah, apart from that though I think that’s it. Like, cos you can't like, if I wash it and stuff and it's like wet, you can't tell then either so that-, it is the only, like it's just the sleeping thing that’s like might be-. But then again if they did realise I'd just tell them. Like that’s the other thing, it's not like if they realised there would be some big drama. I'd just sort of say, and then they'd probably be like, "Oh OK." I don’t know, it just doesn’t, it doesn’t feel like a big sort of scary secret; it's just I don’t need to tell them about it cos I don’t really need to talk about it.

Annie Y’s parents treated her alopecia as “not a problem”, so she has never really seen it as a problem either.

I think my parent’s 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.

Mm mm. 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.

Annie Y’s friends are “really protective” of her. She doesn’t usually tell people about her alopecia until she knows them well.

My friends have just been so amazing about it. I think they're really protective and I think they just had my back in situations where they would never even tell me, but I imagine that people must have asked them at some point. Because people are interested and they probably didn’t want to ask me directly, but if they did, I don’t know; like they’ve never… I can only image them sort of, you know, telling them to like, “Get a grip”, and, “Why are you so interested?” or whatever. So, yeah just be, just be really supportive but don’t treat-, I just don’t think people want to be treated differently; and nobody's ever treated me differently, so it's always been fine. I think it's like if people are really like feeling sorry for you or you feel like they're viewing you a bit differently. I think the other really big thing for me is that I don’t tell people. I don’t want to be that person who like before I meet people, before they get to know me, I'm ‘this girl who wears a wig’. It's like anything – say your like brother died or something – you're ‘that girl whose brother's died’. Before you know them it's not, it's like a, I don’t want it to be like a defining part of my personality at all. So that’s why I don’t tell people straight away and I might wait for a bit, because it's nice to get to know people like just as yourself rather than having this like little thing that they know about you before.

When Annie Y told her boyfriend of 6 months about her alopecia, it “wasn’t a very dramatic conversation” and she thinks he already knew.

I've had like three sort of serious boyfriends. I've been with my boyfriend now for like a year, just over a year – met at uni. And I always, I would never just tell somebody just straight away. It took me quite a while to just talk about it with him. I'm sure he'd figured it out but like he wasn’t going to ask me until I sort of wanted to like talk about it. And yeah and it is a bit of a hurdle to like, to sort of get it out and-. But I think maybe like I can't imagine like I ever would be seeing somebody that would be mean enough to like have an issue. And if they do then they're not really worth knowing anyway, that’s sort of how I view it. But literally I've only had like people would be so nice about it and like not care. So, I think I'm just really lucky. I don’t really know. It always seems like other people have like a more of a stressful time but I just-, yeah, boys have only ever been really, really nice so.

And what sort of stage would you have brought it up with your current boyfriend?

We did like that thing where you like see each other for ages, cos like at uni it's really like, it was quite like a casual thing, so I wouldn’t have told him then. And then I think I went travelling last summer and then came back in September, and then we were like properly together and we talked about it then. I think I wouldn’t have really told him until like then cos I don’t-, you don’t really want to tell somebody and then break-, then like it finished and then. I don’t know, I think you have to really trust somebody, and I think it took like, I'd say that was about six months.

Mm. Do you remember how you brought it out into the conversation?

I can't remember. It just, something, something just kind of came up that I needed to explain about it and then I just told him. I actually just can't remember. Maybe I just had gone home to get a wig or something, and like just said that’s what I was doing, and then, yeah. It wasn’t like a very dramatic conversation. He obviously already knew. You know like you might not notice on a day-to-day basis but if you're like getting with somebody they like probably would work it out. 

Annie Y thinks her school told everyone about alopecia in an assembly. She has never had any issues at school and her friends are quite protective over her.

When I was like eight, I moved schools and it was just a bit like explaining to people, Yeah but when you’re like eight, people, like kids are just like really curious I think. So, I can’t, I just can't remember, but I think that they maybe did like an assembly where they like told everybody. Like, "This is what she's got." And then I was at that school for like absolutely ages, like all the way through. And then I just never really-, I guess I started wearing a wig at like-, I went to a girl's school at an age where you like start hanging out with boys and you're like maybe a bit more like conscious of what you like. But, yeah, I didn’t haven’t any issues at school like at all. Like it wasn’t like I got bullied or anything. Like if anything like everyone was just so nice about it, and all my friends just-, I think they were quite protective I think. If anybody asked them then they were just a bit sort of like, "Why? It's not your business, why are you so interested?" and then I never really had to deal with any of it; I never really heard about anything. I just didn’t really have any problems at school.

Annie Y thinks other people are often more understanding about alopecia than you might expect.

Just that it's really not that bad, and that people are really understanding, and I just think that sometimes I, when you might worry about what people would think or how people are going to be, you have to think about how you would be about it, and you know that you'd only be nice; and I've only ever had really good experiences with people. And people are so understanding, and they don’t want to pry, and like that’s so fine for you to tell them but also, also it's also completely fine for you to not tell them; that’s how I've, the experiences I've had. And that people aren't that interested – either they’ve got, you know, their own things to think about. So, as long as you're like come to terms with it yourself, I think that other people will be just fine. People are so much more accepting than they get credit for; that’s my experience anyway. And then also just like if you need to talk about it, that people are so happy to talk to you. And if you don’t want to talk about it that’s also fine, it doesn’t mean, you know, that you're hiding anything; it just means that you don’t need to talk about it cos you're-, that’s how I feel; I don’t talk about it loads but that’s just because I don’t view it as a really big problem, because it isn't a really big problem in my life. But then equally, obviously if it is that, there's loads of people that you can talk to about it.