Emily
Age at interview: 20
Age at diagnosis: 19
Brief Outline: Emily was diagnosed with alopecia areata six months ago. She finds it difficult to explain to other people that, although she has an autoimmune disease which affects her appearance, she is not necessarily sick.
Background: Emily is 20 and a university undergraduate student. She is single and lives in shared accommodation. Her ethnicity is White British.
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Emily was diagnosed with alopecia areata six months ago. She initially noticed a small patch of hair missing on her head, so she went to see her GP about it. She was told that she had an iron deficiency which her doctor suggested may be the cause. She was given ferrous fumarate, an iron supplement; however, the patch on her head kept growing. She also has patches of hair loss on her arms and legs, and has lost some of her eyelashes.
Emily is unsure of the triggers of her alopecia, although she has often heard that stress may be a factor. Her family has suggested that she may have developed it at that time due to exam stress. However, Emily feels she has had far more stress earlier in her life and does not think her exams are the cause. She thinks that changing contraceptive pills may have triggered her alopecia, but she is not sure. She has thought about talking to her doctors about this but feels there may be little point since her hair loss has already been triggered and because the doctors seen have not been particularly interested in offering her help.
Although Emily’s hair has fallen out, she feels healthy and chooses not to have any treatment for her alopecia. She has heard of having steroid injections in the scalp as a form of treatment, and she knows that many treatments have side effects and involve steroid use which she wants to avoid. She feels that people are not given enough information about the possible risks associated with certain treatments to make an informed decision. Her dermatologist did not give her much information, simply pointed her to Alopecia UK and never mentioned any treatment options. Although she no longer wants to have any treatment, she would have liked to have had the option at the beginning of her diagnosis.
A particular difficulty that Emily struggles with is explaining to other people that she has an autoimmune condition. Although she is physically healthy, other people often perceive her as being unwell due to her lack of hair which some associate with chemotherapy. She has been asked if she wants to lie down and she has been offered seats on the tube before. Her supervisor at university suggested she should take a year out even though she indicated that she wanted to stay at university. In contrast, because she has a family history of autoimmune diseases, many of her family members have had a good understanding. She has also noticed some of the ways that gender identity and sexual orientation can be linked to hair, including assumptions from classmates.
Dyeing her hair had been a key way that Emily expressed herself, so she found it difficult to lose her hair. She initially thought that going bald would be the worst outcome, however she eventually made the decision to ask her housemates to shave all of her hair off. Since shaving her head, Emily feels a lot more comfortable because she no longer feels like she is constantly reminded of having alopecia by seeing her hair fall out. Emily realised that she could still express herself with having no hair or by wearing a wig. The first wig she bought was blue and “mermaid-y” and she finds it “quite liberating” to be able to change her look quickly by changing her wig.
Emily is unsure of the triggers of her alopecia, although she has often heard that stress may be a factor. Her family has suggested that she may have developed it at that time due to exam stress. However, Emily feels she has had far more stress earlier in her life and does not think her exams are the cause. She thinks that changing contraceptive pills may have triggered her alopecia, but she is not sure. She has thought about talking to her doctors about this but feels there may be little point since her hair loss has already been triggered and because the doctors seen have not been particularly interested in offering her help.
Although Emily’s hair has fallen out, she feels healthy and chooses not to have any treatment for her alopecia. She has heard of having steroid injections in the scalp as a form of treatment, and she knows that many treatments have side effects and involve steroid use which she wants to avoid. She feels that people are not given enough information about the possible risks associated with certain treatments to make an informed decision. Her dermatologist did not give her much information, simply pointed her to Alopecia UK and never mentioned any treatment options. Although she no longer wants to have any treatment, she would have liked to have had the option at the beginning of her diagnosis.
A particular difficulty that Emily struggles with is explaining to other people that she has an autoimmune condition. Although she is physically healthy, other people often perceive her as being unwell due to her lack of hair which some associate with chemotherapy. She has been asked if she wants to lie down and she has been offered seats on the tube before. Her supervisor at university suggested she should take a year out even though she indicated that she wanted to stay at university. In contrast, because she has a family history of autoimmune diseases, many of her family members have had a good understanding. She has also noticed some of the ways that gender identity and sexual orientation can be linked to hair, including assumptions from classmates.
Dyeing her hair had been a key way that Emily expressed herself, so she found it difficult to lose her hair. She initially thought that going bald would be the worst outcome, however she eventually made the decision to ask her housemates to shave all of her hair off. Since shaving her head, Emily feels a lot more comfortable because she no longer feels like she is constantly reminded of having alopecia by seeing her hair fall out. Emily realised that she could still express herself with having no hair or by wearing a wig. The first wig she bought was blue and “mermaid-y” and she finds it “quite liberating” to be able to change her look quickly by changing her wig.
Emily talks about her decision to shave her hair.
Emily talks about her decision to shave her hair.
Emily says her alopecia is considered extensive enough that she gets some financial help with buying wigs.
Emily says her alopecia is considered extensive enough that she gets some financial help with buying wigs.
They are all ones that I’ve found myself. But I do have one that I got VAT relief on, it was like a proper one with like a parting and stuff. So I got VAT relief on that so it’s supported by the government. But yeah it was, it was to know that you, it sounds awful, it’s nice to know that it’s bad enough, your hair loss is bad enough that you qualify for something like that because with, I am probably felt just as self-conscious with the tiny little patch on the side of my head as I do now. But then I wouldn’t have been able to get a wig at that point and it sounds silly, but it’s good to know that my hair loss is bad enough that I can get that kind of support. So it’s nice to have, it’s nice to know first of all that it’s clearly common enough that there is something there in place to help people. And also to know that I can as a student buy a wig that is clearly quite expensive and get some kind of help with that. So yeah it’s, it’s, it’s good to know that that’s there but I’ve never really looked into getting an NHS wig because they tend to be quite expensive anyway and I think for the quality that you get, the one that I have, it’s like perfect for me and I’ll probably stick with that around for like until my hair possibly grows back. So yeah just to have the kind of VAT relief on that is really helpful.
Emily looked online about alopecia areata after being diagnosed. She found the information about regrowth “reassuring”.
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Emily looked online about alopecia areata after being diagnosed. She found the information about regrowth “reassuring”.
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Emily says most of the medical professionals she’s seen haven’t explained alopecia areata in detail.
Emily says most of the medical professionals she’s seen haven’t explained alopecia areata in detail.
No.
No?
Not anything. I mean she didn’t, she had to look up what it was so the chances of her knowing like the causes behind it, or the treatments were pretty slim. And I suppose also because she was referring me she didn’t need to know that because she was like sending me to an expert. But then even the dermatologist I think she did tell me that it was an autoimmune disease but she didn’t, if I didn’t know what an autoimmune disease was she wouldn’t have explained it to me. And I had to find all that out for myself and it’s kind of good that I knew about that beforehand, but I think not, and I don’t know if there’s an expectation that doctors think that people know about things that the doctors know about, like autoimmune diseases, but I know that a lot of people don’t know what an autoimmune disease, especially, especially in the context of alopecia. And they don’t understand why it could possibly affect your hair. And I don’t know if it’s that it’s considered not important to explain that bit because I suppose we don’t really need to know what’s going on like behind the scenes, or if it’s that doctors expect us to know that kind of stuff. But I think if I didn’t know what it was I would’ve been very confused if I was suddenly told, “Oh you have an autoimmune disease, that’s why your hair is falling out. Off you go,” like. It’s, it’s quite disconcerting. So obviously I had to do all the research on that myself, which kind of yeah it makes you feel quite insecure in where you stand in terms of whether, you’re like, “Am I ill then? Am I sick? Am I okay? Do I have a disease? Like what’s going on?”
Emily finds other people sometimes assume that she is sick.
Emily finds other people sometimes assume that she is sick.
Emily thinks changing contraceptive pills might have been a trigger for her alopecia.
Emily thinks changing contraceptive pills might have been a trigger for her alopecia.
Emily explains why she’s not currently interested in seeing doctors again about her alopecia.
Emily explains why she’s not currently interested in seeing doctors again about her alopecia.
Are you still taking the iron tablets as well?
I’m not ‘cos they, it was quite a high dose so you take it for a short amount of time. And then when your iron levels are back up you just need to make sure that you keep eating iron, but I’m not on the supplements any more, but I do have to watch what I eat.
Emily would like doctors to understand more about the social and emotional side of alopecia.
Emily would like doctors to understand more about the social and emotional side of alopecia.
That’s a good question. I think my hairdresser probably appreciates it more than the doctors do. Because I don’t know if maybe a lot of people don’t go to get a diagnosis when they are diagnosed, like when they have alopecia because they are embarrassed or whatever. Or if people go and they’re not given enough information about it. But I do feel that especially, even when I went to a dermatologist who must’ve seen hundreds of people with alopecia she didn’t really seem to know what she was talking about. And it, you kind of lose your confidence a little bit because it’s, like if this person doesn’t know what’s going on with me how, how am I ever going to understand what’s happening? But I do think that a lot of doctors don’t, either don’t think it’s important because it’s not like painful or life threatening or anything, and also I think because there’s so much focus on the kind of scientific side of medicine people don’t really understand the social impact and there’s not much documented about the social impact. And especially not the doctors are going to view, they’re not going to go and read something about like people being sad because they don’t have hair. They’re going to read like about the autoimmune diseases and stuff. So yeah, it-, I don’t really expect doctors to understand that kind of thing and to understand the impact of it but I do think it would probably help, especially with diagnosis and with making patients feel a lot more secure about it.
Emily explains some of her concerns about steroid treatments for alopecia.
Emily explains some of her concerns about steroid treatments for alopecia.
Emily talks about minoxidil being available in shops in different strengths for men and women.
Emily talks about minoxidil being available in shops in different strengths for men and women.
Emily finds other people often make suggestions about treatments to try. She sometimes gives low-risk remedies a go to show she’s “doing something”, even though she doesn’t think they will work.
Emily finds other people often make suggestions about treatments to try. She sometimes gives low-risk remedies a go to show she’s “doing something”, even though she doesn’t think they will work.
Emily always enjoyed doing things with her hair. She now shaves her head and has lots of wigs, which gives her the "freedom" to change how she looks.
Emily always enjoyed doing things with her hair. She now shaves her head and has lots of wigs, which gives her the "freedom" to change how she looks.
If Emily wears a wig for more than a couple of hours, it is uncomfortable and she gets a headache.
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If Emily wears a wig for more than a couple of hours, it is uncomfortable and she gets a headache.
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It’s not, but I have found that I do, I can’t wear them for more than a couple of hours without getting a headache. So I have to very carefully plan like how long I’m going to be spending doing things and how worthwhile wearing a wig is on that particular day. So for example I’ll wear it if I’m going to like a nice family occasion or an event or something, but just to see friends who know that I have alopecia anyway I can’t really be bothered.
And is that sort of like the pressure on the temples and things?
Yeah. It’s I think because there’s like an adjustable band around the back, so it kind of digs in at the back of the head and has like two little bit’s here that are like, and then having that kind of pressure on your head, even if you wear it really loosely for like several hours it gives you a really bad headache and then you get home and you take it off and you’re like, “Why did I do that? Why did I bother? Why didn’t I just wear a hat, like it would have been so much easier?” But I think you kind of have to allow yourself those days when you don’t feel comfortable enough with it that you do feel like you have to wear a wig.
Emily doesn’t like that other people have assumed she has alopecia because she’s vegetarian.
Emily doesn’t like that other people have assumed she has alopecia because she’s vegetarian.
Emily had an experience of meeting someone new who wanted to touch her hair and asked her boyfriend for permission.
Emily had an experience of meeting someone new who wanted to touch her hair and asked her boyfriend for permission.
Yeah I mean, I don’t really understand like what the thought process was behind that because I, that, that annoyed me. That really annoyed me. I mean I don’t get annoyed easily by stuff like that because I always understand that a lot of people don’t know about alopecia, they don’t know what it is. But that did annoy me. I mean I don’t really know how I was meant to react to that like, be like, “Yeah, tell him that’s it’s okay.” And then he tells him that it’s okay like it’s the fact that I think the thing that annoyed me the most was that he literally took my agency away from me, because I, if my boyfriend wasn’t so aware of the fact that would annoy me, they might be like, “Yeah that’s fine. Touch my girlfriend’s hair.” And like I just, I don’t understand what the thought processes behind that kind of thing because just, I mean it’s difficult enough when you have something that people find kind of odd and freakish, and then for somebody to not ask you personally about something to do with your body it’s just, it’s uncomfortable. It’s really horrible. It kind of makes me realise what a lot of people who are like physically disabled and visibly disabled may often say that, like their carers or their parents get asked things instead of the person. And I mean it’s just, yeah it, I mean having alopecia makes you very aware of things because you’re very aware of people’s prejudices and people’s interactions with people that they don’t consider normal. And that example just really stuck out for me because it was just bizarre like, I just, I didn’t understand it at all. But I did have a go at him.
Yeah.
I did have a few words, yeah.
Emily thinks children and young people with alopecia aren’t representing themselves enough through social media.
Emily thinks children and young people with alopecia aren’t representing themselves enough through social media.
Emily says her appearance of a shaved head has led some people, including classmates at university, to assume she is gay.
Emily says her appearance of a shaved head has led some people, including classmates at university, to assume she is gay.
Emily wanted to have the flexibility to miss a few lectures and felt her lecturer didn’t fully appreciate how alopecia was affecting her studies.
Emily wanted to have the flexibility to miss a few lectures and felt her lecturer didn’t fully appreciate how alopecia was affecting her studies.
Yes actually lots, that’s very interesting. I told my supervisor that I was, like I might miss a couple of lectures and stuff here and there because I’m struggling with things and he told me to leave the university. He said, “Maybe you should take a year out… Mm.” And I was like, I don’t wanna not take a year out, like I’m already a year behind because I’ve already taken a year out before university, and he was like, “No you should definitely take a year out.” And I’m like, “You’re not listening to the things that I’m saying. I would like to stay in university, just maybe like I might miss a few lectures, but I’ll catch up on my own, like I’m fine with catching up at home.” And yeah I kind of just left it there because he just kept pushing it which I mean I think for something that’s clearly not a physical condition, and also he said oh what was it? That I asked like if I failed this year would I be able to re-take it possibly, and he said, that would be, that would only be for unprecedented medical issues. And I was like, “That, this is, that’s what this is.” Like, “That’s exactly what I have.” And I, like he just kind of left it there and I was like well if this isn’t unprecedented medical issue like I, you might think that it doesn’t affect me physically in terms of how well I can do things, but like clearly it does because I’m saying I might miss things. So yeah it’s, that’s kind of difficult to explain to somebody how it affects you because without them knowing, I think also possibly the fact that he was male meant that he didn’t quite understand the severity of it to me personally. Yeah it was, it feels a lot like you’re not being listened to when you’re trying to explain that you might need a little bit more support. And they’re like, “Oh you should probably leave, like that would help.” Like “No. No.”
Emily has bought many different wigs, some more expensive than others. Having the option of wearing a better quality wig when she goes out is important to her.
Emily has bought many different wigs, some more expensive than others. Having the option of wearing a better quality wig when she goes out is important to her.
Emily worried about getting a job in retail which might require her to have her hair tied back. She felt unsure about asking her employer for information on uniform policy.
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Emily worried about getting a job in retail which might require her to have her hair tied back. She felt unsure about asking her employer for information on uniform policy.
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A lot of the jobs that I’ve been applying for having been retail, and they’re very set on how you look, that’s very important to like have make-up on and have your hair done and stuff. So I would feel like I would have to wear a wig, but then I wouldn’t want, I feel like there’s a kind of safety with not wearing a wig in that if you go somewhere people aren’t gonna say, “Like you need to tie your hair up, why don’t you have this with your hair?” Blah di blah, and they’ll kind of just leave it. Whereas if I went in and perhaps looked more professional and had a wig, ‘cos like it’s awful that you should seem less professional without hair but it, it’s just kind of a fact isn’t it unfortunately? I would, I wouldn’t know whether I should ask like, “I’m wearing a wig, can I take it off some days?” What should I do with my hair? And they’ll be like, “Yeah, you need to have your hair scraped back,” and I’ll be like, “I can’t scrape my hair back ‘cos it comes off.” So I’m not sure, I wouldn’t know how to ask those kind of questions or whether to assume certain things about the kind of uniform policy.