Emma

Age at interview: 23

Age at diagnosis: 14

Brief Outline:

Emma had a small bald patch at age 14 which regrew with steroid ointment. However, more of her hair fell out whilst at university. She has tried various treatments but Emma says she feels quite comfortable and has “accepted” that her hair might not grow back.

Background:

Emma is 23 years old and a physiotherapist. She is engaged to her partner who she lives with. Her ethnicity is White British.

More about me...

Emma was 14 years old when a hairdresser noticed a small bald patch on the back of her head. She hid it with the rest of her hair and used a steroid ointment which helped her hair to regrow. However, more of Emma’s hair fell out whilst she was at university, including her eyebrows and eyelashes. Emma originally thought her alopecia could be to do with the fact that she was doing a lot of exercise, underweight and being tested for anemia all at the same time. She doesn’t think alopecia is caused by stress in her case as she doesn’t consider herself to be a very stressed person. She has noticed that her hair falls out around October and so thinks it could be seasonal. For example, Emma experienced quite a lot of hair regrowth last year but it fell out again that November and now she feels she is “back to square one”.

Losing her hair at university was a very upsetting experience for Emma. She took a break during her studies and remembers crying many times a day. Her GP referred her to a dermatologist when they saw how upset she was. Emma’s GP also suggested that she take antidepressants but Emma didn’t try them as she heard they can make you feel worse. Emma found that her dermatologists helped more with her eczema than her alopecia. Her dermatologist told her there was no cure but did ask how Emma was and helped her with wigs. Emma tried methotrexate (immunosuppressant tablets) for a year, but she didn’t have any regrowth and it made her feel sick, tired and “not herself”. Emma stopped trying different treatments for alopecia as she says she would rather not “build up her hopes and have them knocked down again”. 

Alopecia had a big impact on Emma emotionally. For example, at university, Emma says she did not feel like herself and worried that no one was going to find her attractive. She felt that first impressions and appearance were very important and she sometimes felt a bit jealous of friends who didn’t have anything ‘wrong’ with them. She did have support from her personal tutor and went to an alopecia support group which she found really useful as she met other women there her age and so felt less isolated. Emma says that she is quite confident now and feels she has accepted her alopecia. She has found that being open helps and prefers people to make jokes and be light-hearted about her hair loss. At university, only her very close friends, family and partner had seen her without a wig on, whereas now Emma feels comfortable enough to only wear bandanas. She adds that there is a positive side to hair loss in saving money on haircuts and not shaving her underarms and legs. 

Emma’s advice to other young people with alopecia is to try and “accept who you are at the time and what has happened that day”. Even though you don’t know what’s going to happen with alopecia, she encourages others to try and just let it happen rather than monitoring hair regrowth. Emma advises people with alopecia to tell others and not hide as well as to try going along to their local support group.

Emma researched about different types of alopecia as well as causes and treatments.

Cos like there’s three different types of alopecia. You’ve got like the areata, which is like what I had initially, which is like a small patch. And then I think it’s totalis, which is like all of your head I think, your facial hair and whatnot. And then it’s like universalis, which is I think what I’ve got now, which is like you lose everything. Which is great like there [gestures to body] but not so great there [gestures to head]. And it sometimes can affect your nails apparently. But I’ve never had any problem with my nails at all. So, yeah, I did start to look up about just the definitions and different types and the causes. Which, the causes, it just sort of said stress. Which I was like, well, I don’t really believe that. And there was other causes as well. You know, sort of with autoimmune, I think triggers were stress. And I just, I don’t think that my trigger was stress. And then like I was just looking at different treatment options. And there was like, I think there was, there is quite a lot, but I think by my point when I’ve got no hair like and not a lot of them applied to me. And I think, as I’ve said, like a lot of them took a lot of effort and there were, it’s quite sort of tiring stuff to do. 

Emma talks about some of the emotional support doctors have given her.

Well, my very first doctor that I saw was the GP. And I was going back, sort of I went back about three times in the past, in the l-, in the space of two weeks just because it was just gradually getting worse. And he was seeing like I was really upset because this was the time when it was just first coming out and you just feel horrible. Like I just remember I cried every-, I cried like, I don’t know, it must have been about six times a day. Cos it was just, you know, every time you look in a mirror, you look at other people with hair and you’re like, that’s what I was saying to him like, “I’m just, I’m depressed.” And I’m not like a depressed person at all. I’m really quite optimistic. And he like, he gave me a hug and he was like, which, you know, you don’t expect from doctors all the time. But I think he just saw how upset I was. And he referred me straight away for a dermatologist. And the dermatologists, like they’ve been brilliant about my skin. But I think about my hair, they’ve just been quite realistic. Which is fine. I’d rather them be realistic. So just saying that, “There are treatment options, but none of which are going to cure it.” Which is like what, it’s what I expected, but I think, you know, it doesn’t leave me with much hope. And, you know, like they check your hair and, or they check your head and they say, “Oh, well, that, that area’s scarred, so there’s probably not going to be any hair, any hair regrowth there.” And it’s a bit like, you know, you know, “W-, is it ever gonna grow back?” And I think cos there’s no answers to it and there’s not many people that specialise in it like sp-, you know, so specifically. So, you know, a lot of the time seeing the dermatologist it was just quite, you know, just, “How are you doing?” More like psychological help and, you know, help with the wigs and stuff.

Emma tried prescribed topical steroids and shop-bought minoxidil. This helped when she had a small patch of alopecia, but doesn’t use either now.

The steroid ointments, they, it was just like a really thin liquid that you just literally put on your s-, like the area and just massaged it in I think about three times a day. And that was like completely easy to use. I did use minoxidil as well, which I just bought from Boots. And I don’t know if that worked or the steroids I used. Bit of both. But that was fine to use as well. S-, and so, yeah. I’d say if you have a small patch of alopecia, I, I think, well, for me it worked. So, and I, and I know some of the girls said about trying it on, on your forehead because a few of them have had, you know, positive feedback from it. But, so I, I might try that because that’s not painful or anything. And I think that’s just a bit of lotion on your head. So I’ll give that a go again. You know, if it works it works. Cos as I say, it’s just, you know, a little tube that you get and just smother it on. So that’s quite easy.

Emma decided to stop taking methotrexate when she didn’t see any improvement with hair regrowth and had difficult side effects, including flaring-up her eczema.

With the methotrexate, it w-, how old, I was in my, I think I was in my second year still. And it was just making me very sort of tired all the time. So I’d be going to university and I couldn’t concentrate on things. I just, I just feel exhausted. And, you know, I just felt very sick. Not, not all the time. But I think after taking it, a couple of hours after I just felt like, you know, when you feel like it’s not right and I, I could be sick. But, you know, I just felt really nauseous. And that, that went on, not all the time I was on methotrexate, but it was just like intermittently. But I just, for the full year I just didn’t feel like a hundred per cent. I didn’t feel like me. I just felt really run down. Like quite heavy-headed as well. I felt like, as I said, you know, I just didn’t feel well for like a 21-year-old girl. You know, I just thought ‘well, it’s not really worth going through without having any positive effects really’. What else? My skin, cos apparently methotrexate is for skin as well and to help with that. I don’t know if it’s just sort of the different dosages and whatnot. But if anything it made my skin worse. I just think it was just like, whether that, that might have been because I felt run down as well, it was just having a bit of a counteracting effect. So, yeah, it was, it was just, and then that was adding to my stress because, because I felt like, I felt, I didn’t feel right. That was making me feel a little bit more sort of stressed about the situation. I wasn’t seeing any positive effects for my hair.

Emma finds that telling people she is bald makes her feel more confident in herself.

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

Emma initially felt less feminine when she shaved her head.

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.

Emma talks about styling her real hair wig.

Yeah, well, I’ve never had a, I’ve never had a synthetic one. I’ve always just had human hair ones. But my human hair ones I wash about once every four to six weeks, unless I’ve been out and they need a wash. And then I often, I, I’m quite reluctant to sort of use heat products on them all the time cos I think like you can’t get them cut. You, I, I get them trimmed but I don’t g-, I can’t get them cut all the time. So I just tend to, I prefer my hair to be like wavy. So I like w-, wash it and put it in like a plait and then like in a bun and leave it to dry like that, just leave it to set. And then when I take it out, it looks really natural. So you can straighten them and stuff. And you can use the exact same products that you use on normal hair that you do on wig hair. But obviously I just, I don’t want it to look dry. So I just prefer to, you know, twist it and things and do things like, without using heat products. But they are really easy to manage. It’s quite handy to, to have like the hair, to put, put it on the sort of polystyrene head to style it as well. And you can always h-, make it the, the day before you go out. Which is quite handy. Because you can just put it on and you get dressed quicker. So that’s quite good.

Emma thinks it’s important to go to someone with a lot of experience of eyebrow tattooing.

Where did you first hear about sort of semi-permanent make-up like the tattoos?

I the lady I get my wigs from, who’s from [place name], and she’s like brilliant and I always go back to her. And she gave me her, her details cos she always recommends her to like her clients and stuff. And she was from the same area and she was, worked with the NHS as well, so she, she was just very sort of specialised in what she did. So I, I got the information from the lady I get my wigs from. And she was really professional and, you know, she, you could just tell she knew what she was doing. Cos I didn’t really want to go to some like hair and beauty like college person, who a lot of my friends had said to go to. Cos I think like it’s something that’s gonna be on your face for a long time. If they do it wrong, it’s just gonna make you look a bit silly. So I’d rather, you know, go to somebody who knows, I pay a little bit more, and knows what they’re doing and had lots of experience with like alopecia and whatnot. So, yeah, like she was, she was really good. I would definitely go back to her as well.

Emma talks about losing her eyelashes and the difficulties she has had with false eyelashes.

I mean my eyebrows are tattooed on, so I’m not really bothered about them growing back. But I do hope my eyelashes grow back just because like doing my make-up’s quite difficult. I just think, you know, when you’re going out your eyelashes are like a big part of sort of your outfit really. Cos, you know, they make you just feel a bit more like pretty. And I never wear like eye make-up apart from mascara. And I’m awful at doing make-up as well. So, you know, doing my eye make-up, like I just don’t know what to do. So that’s like, and you get quite a lot of eye infections as well, cos obviously your eyelashes aren’t just for putting mascara on. They have a function to like protect your eyes. They’ll often get like styes in them just from bits getting in them. Which is, I think the wind as well, like your eyes just like [squints] get like that. But, so, yeah, like I, I want my eyelashes to grow back pretty quick. But, you know, if not, then it’s just, you, you know, it’s, you just have to like live with it really. You can get like the ones that you can attach on, which you can wear for going out. And they have like a bigger base. Obviously you don’t have to, you can’t stick them on to any like, the lashes that are already there. But I wore them for a while when I first lost them a few years ago, but I thought they were just more of a hindrance. I think that you’re very like conscious of them sort of looking wonky or like being on your upper lip or whatever when you’re too drunk. So, but, so I’d rather just sort of get, trying packs for my make-up and just try and just make my eye make-up look as though I’ve got eyelashes without putting eyelashes on. 

Emma felt jealous of friends who don’t have to worry about their hair. She had an emotional time at university when her hair was falling out, but says her friends were very supportive.

You do get a little bit jealous. Which is an awful thing, but like I get jealous of my friends that are just like not got anything wrong with them. They’ve not got this extra bit of stress. And they can just go out and they’ve got hair and they can do whatever they want to their hair. They can abuse their hair and like dye it all the time. You just think like ‘well, why can’t I like-, why can’t I just have hair?’ And, as I say, I had to take a bit of time off university and like I did work at university as well. So it did affect like my attendance and stuff. But everyone was really supportive. And there would, there would be times when I’d just burst out into tears on the checkout or whatever at Morrisons cos like I could just see my hair dropping out. And it was just horrible. It is quite embarrassing as well. Cos I’d be at university and we had a lot of like practical days because-, doing physio and stuff. And I’d be wearing like jogging pants and you’d just see like hair like everywhere. And you just think like ‘God, what people, what do people think?’ And like, ‘I’m covered in hair.’ And cos obviously that’s when it just-, it just comes out. You know, like when you’re at uni and it’s all on your back and it’s like ‘ugh’. You feel awful. You just think people are gonna look at you and think ‘God, you’re really dirty. You’ve got hair all over you.’ But, that’s not a nice time. But I mean every-, like all my friends and even people that weren’t necessarily my friends when I went to uni were just all like-, they was all really supportive. And like people, I didn’t say that I’d got alopecia, cos I wore a wig initially all the time. They didn’t even know. Cos the wigs were all really good. But as I say, all my really close friends, they couldn’t have been any better really.

Although being bald is normal for Emma, she found it quite a big thing for her partner to see her without a wig on.

I think when I first met my partner, like it was a big, quite a big thing to show my head, basically because I think it’s not really classed as like the norm. Where I just think like to me now, like me being bald is normal. But I think when you’re first in a relationship and you’re already bald, I think showing somebody without your wig is quite a big thing. So that was quite a big adaption to me. Which I wouldn’t have to have made if obviously I had hair. But, but, yeah, like it took a while for me to do that, you know, like show, like not wear my wig in front of, in front of her. But, you know, it’s, it was fine and, you know, she’s accepting of it.

When all of Emma’s hair came out in her second year at university, she worried that she wouldn’t fit in any more.

I think like university’s a time when you just sort of, you find who you are as a person. Which sounds really hippy and whatnot. But I just think you, you do, cos you’re away from home, you're finding your independence, you’re sort of meeting new people, you’re in different, more difficult situations. And I think how you look is very important cos it’s first impressions. And I think my first year, as I say, I had hair. And it was a little bit like, it was a bit, a little bit annoying because it was just, you know, it, my alopecia was there but it wasn’t affecting me to the point that I w-, didn’t have any hair. But, so I was still really outgoing and whatnot. And then my second year, when it all came out, as I say, it just, you just feel like all your, your friends are like, who are pretty and stuff. You don’t fit in any more. And you just feel like they’re not gonna like you because, I think it’s just a really deluded perception of like what you think they’re gonna think. When they’re not. They’ve been really supportive. But I think you just put this big, sort of your hair is everything like for a girl. And, you know, I think I just felt like it made university really stressful at times. And, you know, it’s just, it’s a bit more difficult than it had to be. Like I’m not mean d-, people that s-, don’t have more diff-, you know, far from, far worse things than alopecia and stuff. But it’s something that’s affecting you and it just makes your life a little bit more difficult than it should be and what your friends are.

Emma tops up the NHS wig prescription with her own money so that she can get a human hair wig rather than a synthetic one.

In terms of like getting the wig, I’m entitled to like getting prescriptions per year, which equate to like, I think it’s like two synthetic wigs. Which equate to like, I think it’s like sort of £700 or something. But because, like the synthetic, synthetic wigs are good, but I get real hair ones just cos I think it’s, if I’m gonna have it for quite a long time I’d rather them look more natural. I can do more things with them. But however they are more expensive. So I have to like put the additional money in myself. But I mean the one I’ve got at the minute is, you know, the same colour as, the same colour as my old, but as my natural hair. And I’ve had it two years and it still looks like brand new. So I’d rather pay the extra and, you know. But I’m always entitled to that free prescription every year. So from the NHS, that’s good.

Initially, Emma was nervous about going to her local alopecia support group but it was really useful and now she recommends it to others.

The alopecia support group was really useful actually. I was really nervous about going cos I just think like, is it gonna be full of old people? Cos I just thought, if it’s gonna be full of old people, I just think I’d rather meet someone that was my age. And there w-, there was about three girls that were all my age. I was the baldest. Which was great. But they were all just, they’d all had it around the same time and, you know, just, you could just relate to them. You could be like, “Oh, how bald are you?” And it was just like, you know. And so that was really useful. And, you know, they’d all just share experiences and, you know, they’d all bring, they’d all bring their new wigs in. And it was just nice to just find people that just understood you. Cos I think like I’ve always thought, you know, I’m not, I’m not poorly. And like when you say, when you say to people, you know, “I’ve got alopecia” you’re not poorly at all. You just, but you have got an autoimmune problem. Which isn’t as bad as some autoimmune problems, but it is still bad in terms of like it’s your hair, like a big focal point when you look at someone. When you don’t have it, that sort of takes your identity away. It just, it just has a lot of, you know, emotional downfalls to it. And, you know, they all got that. Which I think sometimes when you talk to like your friends that haven’t, you know, when I speak to all my friends that haven’t got a problem wrong with them, you think, 'well, why have I got this?' And, you know, like you, they can’t relate. You know, they listen. Which is great and I, you know, never ask anything more from them. But it’s nice to sit down with people that are like, "Oh, yeah, I know what you mean". And, and like, you know, say, cos I, I thought I’d be the only one that has a cold head. When I’m in bed my head is freezing. And everyone was like, “Oh, yeah, I get that as well.” Which is nice just to hear that you, you are. Cos you just, you feel quite isolated. Because I’d never ever met someone with alopecia until I went to that group. I think cos it’s not, I mean, people might wear wigs and you don’t know. But like it’s just people don’t, you don’t often see people with it. So it was really useful to go to that, I’m gonna go again. So I’d say to anybody to like try and find your alopecia group and go to it. Cos it was really useful.

Emma says losing hair and the uncertainty of alopecia is hard for young people recently diagnosed. She says they might be considering treatments and encourages them to take things day-by-day.

I think like people who’ve just been diagnosed with alopecia, I think do, don’t, try not to see like the very negative side of things. Like, you know, like I think, yeah, look for treatment options. I think give them a go if you want to. But I think, I think the most important thing is just accepting, not that you’re gonna be bald for ever at all, at all, because that might not happen. You don’t know what’s gonna happen with alopecia because there’s no, there’s no definite prognosis on what’s gonna happen. But I think, you know, just accepting who you are at the time and what happens day to day. You know, and s-, like not to monitor how much hair you’re losing or how much, how hair you’re, you’re regrowing. Just let it happen. Which is awful. I also think that if, what I found really hard, as I've said, is like the hair falling out. I found it so hard. Because you’d wake up in the morning, you’d have hair on your pillow. And, you know, you brush your hair and more comes out than should do. And I, I just always thought ‘stop’. Cos at one point I had like half my hair and I just thought ‘what’s the point having half my hair?’ And I just cut it off. And I just felt a lot better. Cos it just felt like losing my hair was so much harder than being bald. I think like, as I say, I got, I d-, I did get really upset by it all. And I think, and it’s natural I think. You shouldn’t feel that you shouldn’t be getting upset.

Emma says she wanted an explanation of alopecia causes, but doesn’t like when doctors insist that stress is a trigger.

A big thing I think is not just saying, “It’s stress.” I think it’s quite patronising for somebody to say it-, you know, it, stress has triggered it. Because I would say that I’m really not a stressful person and I, everyone will just say I’m really laid back. And I’ve never had any triggers that I can ever think of to have caused it. And I think it’s just kind of like a go-to answer for why has it happened, “Oh, it’s stress.” Cos it’s not. You’ve obviously, it obviously, with having eczema I’ve obviously got a bit of a history with autoimmune. So it’s obviously come hand-in-hand with that. And unfortunately it has just ‘oh, well, I’ll just get rid, you know, attack your hair cells’. But I think maybe I’d probably just like to have somebody to have sat down and maybe just explained. But I think it’s just cos it’s how I am as a person. I’d rather know about the ins and outs as to what has caused it and, you know, be like the scientific reason behind it, just so I could have a better understanding.