Emilie

Age at interview: 18

Age at diagnosis: 4

Brief Outline:

Emilie developed alopecia universalis when she was 4 years old. She remembers feeling very angry about her hair loss throughout her childhood. Over time, and with the support of loved ones, Emilie has grown more confident and accepting of having alopecia.

Background:

Emilie is 18 years old. She recently finished sixth form and is due to start at university. Her ethnic background is White English.

More about me...

Emilie has had alopecia since she was 4 years old. She noticed clumps of hair on her pillow one morning after she woke up and, after that, her hair loss was quite rapid. Emilie’s current diagnosis is alopecia universalis. Her hair loss affects her scalp and eyebrows as well as other areas of body hair such as on her legs. She is hoping that she won’t lose her eyelashes but she is aware that this may be a possibility in the future. Emilie doesn’t know exactly what caused her alopecia but she thinks that genetics plays a part. She also finds that her hair falls out more when she is stressed. 

As a child, Emilie remembers having blood tests taken as doctors tried to work out whether there was another underlying health condition causing her alopecia. She remembers seeing a dermatologist when she was little; she got on well with the dermatologist and felt that he knew her well. However, she now tends to see lots of different dermatologists and it can be frustrating having to re-tell her story at each appointment. Emilie appreciates when her doctors are honest about the fact that her hair may never grow back. More recently, Emilie has talked to her dermatologists about ingrown hairs on her legs. She feels embarrassed about showing her doctors the skin on her legs because they are quite scarred from where she has picked at the ingrowing hairs. Emilie’s dermatologists have given her various creams for her legs but nothing has helped that much so far.

Emilie felt very angry about her alopecia when she was a child, partly in response to other pupils making nasty comments. She recalls that the other pupils would ask her if she has cancer and bully her for her hair loss. Through emotional management classes, Emilie learnt techniques for responding. She thinks that often people asking such questions are very ignorant of alopecia. Emilie has found humour to be important when making new friends and she finds meeting people easier now that her friendship group has also matured. Emilie’s school teachers in both primary and secondary school were supportive. Some teachers in particular were especially kind to her whilst she was experiencing bullying and other emotional difficulties. In turn, Emilie helped to look out for other kids at her school who were being bullied or in need of someone to talk to. 

Emilie likes to express herself through her clothes and particularly a vintage-retro style. She doesn’t like to wear wigs as she finds them itchy and uncomfortable. Emilie loves doing creative activities such as drama, singing, dancing and art, which she finds help express her feelings and boost her confidence. Her advice to other young people is to be themselves and to feel comfortable in experimenting with their style (e.g. through clothes, make-up and other accessories), whether or not this includes wigs.

One upside for Emilie of being bald is enjoying the feel of wind on her skin.

I’m very much a winter person, I love winter, I love it being cold, I love being able to layer up cos once again with the clothing I like to express myself with clothing, in summer I can’t do that as much cos, I get too hot so I just wear a playsuit or, you know, a pair of shorts, I can’t really do much. Winter, I can really express with layers and jewellery and tights and shoes and all sorts but also once again the colours I love-, just love it being cold, people struggle with the wind because-or I forget people struggle with the wind because they’ve got hair especially in the car when they’ve got the window turned down they have to keep doing this [flicks head].

[Laughs]

Trying to keep their curls from going out and, you know, kind of sitting like this [leans back] and I’m sat there just enjoying the breeze on my face. And I turn around and go, “Oh, oh, sorry, d’you want me to shut this? No? Okay then.” [Laughs]. So its’s a struggle for other people but for me it’s just never a struggle.

Emilie was shocked when she read online that pulling her hairs out when she’s stressed could be a form of self-harm, as it’s not how she thought about it.

Is the scarring on your legs, did you say that’s from trying to get the ingrowing hairs out? 

[Nods]

Could I ask a bit about that? 

Yeah, it’s, it’s become a habit and I actually tend to do it when I’m stressed and I actually kind of, I know a lot of people do this try and self-assess themselves on the computer but there was something kind of shocked me and scared me and kind of not stopped me from doing it completely but prevented me. When I, I do it when I’m stressed, you know, I really dig at my skin and I, you know, I get a pair of tweezers and I try ripping these hairs out and I notice that I get lots of scabs and I get very upset over it and then I think ‘why is it like this?’ and then I’ll get upset and then I start picking again, you know, trying to get rid of the scab and pulling off the scabs.

Emilie’s alopecia affects her pubic hair and she prefers to shave the area.

When it comes to pubic hair – patchy, really patchy. I don’t- because it’s patchy I just get rid of it all, I just get rid of it all cos it’s otherwise a nuisance. It’s very strange, I think it’s more kind of active down below basically, especially on the front, the front view. It’s, it just, I keep getting patches and then I won’t notice cos I just get it all off, I just shave it all off because it’s just such a faff but then I’ll realise that the patch has moved and the hair’s grown back in other places and not just small patches, it’s one big patch and another, you know, patch come out as well. I’m used to that, that’s fine, I just get rid of it all I feel more comfortable without it there, you know, like I said if my hair grew back I’d shave it off cos I’m uncomfortable with it, so I’m more comfortable with it not being there at all.

Emilie built up trust with her dermatologist when she was little and preferred this over new doctors who she had to re-explain her experiences to.

I do remember seeing this one doctor and I saw him for a long time and I liked him, he was a very nice doctor, so much so that this one day I bought these ladybird stickers and I came into his office and he was talking to me and I gave him a ladybird sticker because he was important. And he stuck it, he had some bookshelves and he stuck it on the end of a shelf and I hadn’t seen him for a long period of time and I can’t remember-, it was in high school last time I saw him-, and he still had the sticker after all those years he still had the sticker up there. But he, he left now, he’s retired and ever since I’ve had all sorts of different doctors, people who don’t really know me, I have to keep re-explaining how long I’ve had it for and them constantly telling me, “You do realise it’s not going to grow back,” I say, “Yeah, perfectly aware of that.” but I remember seeing him and I remember seeing-, going to my anger management classes but that’s about it, can’t remember the in-between parts of me losing hair, it’s just very strange. 

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.

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.

Emilie encourages young people with alopecia to have fun with their appearance and expressing their identity.

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.

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

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.

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

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’. 

Emilie’s brother wrote in to a TV programme when she had been cross about an interview they had shown with someone with alopecia.

When I have occasionally read, you know, articles and things about people who are going through alopecia and they say, “Oh you know, I’ve suffered so long with this illness,” and I’m sat there going [head in hand] ‘k then, no’ it’s very frustrating, it’s very frustrating when I hear someone say it’s an illness, it does get me very angry. I remember watching TV one day with my brother when we were quite a lot younger and it was something my mum had put on and it was a talk show and someone was getting interviewed because they’d lost a tiny patch of hair and because of that they were wearing wigs and first of all I was ‘that’s ridiculous,’ you know, I was saying, “You don’t need to wear a wig, it’s only a tiny patch of hair,” but then my brother went through all the lengths of finding the website and sending them a very-, you know, strongly worded e-mail saying, “This is ridiculous. First of all, it’s not an illness. And my sister has gone through this for so many years and she never wears wigs,” and I thought that was really sweet of him. 

Emilie’s boyfriend’s dad also has alopecia and she talks about how he makes her laugh about it.

Most of the time we take a lot of jokes we, we just, because when we’re out in public they seem to think that we’re father and daughter because of how we look. And he made this comment which forever makes me laugh where there’s a lot of kids in a café that were looking at us and he made a reference to a movie where there’s these aliens had come down and, can I mention the movie, is that okay?

Yeah, yeah, sure.

Coneheads? It’s an 80’s movie. Basically they’ve all got really, really big cone bald heads he constantly refers to that film and, for jokes, and he said, “Emilie, on the count of three, turn to them and stare”. So we just sat upright and just, you know, [turns head to the side and stares] just joking around, cos some kids just laugh about it and these kids were like [gasp] “Oh, oh”.

[Laughs] 

So [laughs] yeah, it is a connection that I haven’t been able to have with quite a lot of people and he’s actually the first person that I’ve spent a lot of time with that’s actually got it. when I was younger we’d meet people who had alopecia, who’ve had alopecia but not necessarily still do, and a lot of them are much older than me so I still felt very alone and it was lovely the fact my mum and dad did this for me, you know I felt really appreciated and I appreciated what they were doing. But at the same time because there was no-one around here that I knew had it I did feel very isolated for a long time and it took a while for me to get out of that isolation and, you know, take my hood down and start actually making friends and doing things that bring up my confidence.

After some bad experiences with boyfriends, Emilie now has a boyfriend who loves her as she is and doesn’t want to change her.

There was a few boyfriends I had but it would be little things like they don’t wanna hold my hand in public or, “If you’re coming round mine, would you mind wearing a wig?” things like that. And there was one comment made saying that, “With a wig, 10. Without a wig, 8,” and I sat there going ‘okay then’ [laughs]. So for that small amount of time because that person said that and I was with them for a very, very short period of time, it really got to me, really got to me, cos I was thinking ‘well then, why are you with me then if, you know, you prefer me in a wig?’ That ended very, very quickly that kind of relationship, I didn’t count it as a relationship cos it was like Year 11. But I’ve actually been in this relationship for almost two years with this person that I’m in with now, and he, we’ve actually known each other since I was 10 and I completely forgot about him, we both met when I was 10, and the way he introduced himself to me was at a cub camp, he came up to me and said, “My dad’s got no hair too,” and then ran off and that was the first ever meeting I had of someone that I was gonna be with, you know. And then he came to my sixth form at school and we got re-introduced cos he was in the same form as me and within about six months of him being at my school- not, less than that sorry, you know, we started dating, he took me out for a meal and we went out for coffee and, cos we’re both very musical people, he’s an amazing opera singer, not an actual like official opera singer but he can sing that style and he plays all sorts of instruments, you know, he’s very talented and we had a lot in common, including the fact that his dad had alopecia and I had alopecia. So, and when I asked him, this is a very important thing for me, any person who was interested in me I’d always ask them, “Would you prefer it if I wore a wig or not?” and this was the, the kind of trick question. And he turned around and just said, “That’s-”, you know, “That’s a silly question, of course I prefer you without a wig”. And I actually showed him a few of my wigs and he told me that he actually wanted to burn them, which I thought was so sweet, so sweet. He’s so accepting and so understanding but I think its’s because of the way he’s been brought up but also he’s not very judgemental. You know, he judges people on their actions and the way they’ve acted towards other people and the way they’ve acted to him before he even says anything. But anytime I’ve felt, felt insecure about it and it’s like, “Would you rather me wear a wig?” or, you know, [sighs] sometimes I’ll watch someone on TV and think ‘oh, she’s got lovely hair, if I had hair I’d have her hair’, you know and he goes, he’d just go, “No, you’re beautiful the way you are, I don’t want you to change. If you did-, if your hair did grow back then, you know, great for you, but I love you the way you are.” So he’s very, very sweet.

Emilie says her reception teacher helped her a lot when her hair started falling out.

And I’ve got a lot to thank people, you know, teachers at my primary school, especially my reception teacher - she helped a lot, cos my hair started falling out in her classes when I was in Reception to Year 1 and she was there a lot for me. My mum was working at the school at the same time but she obviously she-, my mum couldn’t keep coming to me and seeing how I was because she was working, it was her job, which is absolutely fine. But when I did need help I’d go to my teacher first, because she was my teacher but I’d also had my mum there as well. And she actually gave me a little dog which is from the film Lady and the Tramp, so a little grey dog, Tramp, and I’ve still got him and she said, “If there’s ever an issue and I’m not around or your mum’s not around and you feel very isolated, tell your problems to Tramp and put him in your pocket.” So basically putting your problems, saying your problems out loud and then putting them away and dealing with them. And I saw her the other day actually at a barbecue and every time I mention I’ve still got the dog, you know, “Thank you, thank you for making me as whacky as I am now, thank you for helping with my confidence and supporting me like another mother.” [inhales] Very-, yeah, just had a very supportive, kind of environment there at school.