Jobs, work and alopecia

Some of the young people were currently working or had experience of part-time jobs. Most people said alopecia didn’t have a big impact on their work, although some people talked about how their alopecia and work life could affect one another. This includes work as a possible trigger and Becky felt that the stress of starting a new job made her alopecia come back.

Some people worried about what their employers and other people at work would know about alopecia. Meghan would like to become a lawyer and thinks it would look “unprofessional” if she wore a bandana. People mostly talked about their experiences of work in relation to alopecia on their heads (scalp, eyebrows and eye lashes).

Some people described the importance of paid work in giving them a degree of financial independence so that they could afford things, including for their alopecia, and rely less on other people for money. Often, parents covered costs associated with alopecia, as Annie Y described for her wigs and Annie X for alternative therapies. Although they were very grateful for this support, both said they would like to be able to cover these costs themselves in the future.

Deciding what to wear on their head while at work, and whether to tell people about their alopecia at an interview or when starting a new job, was a problem for some young people. Grace said she wore a wig to a job interview because she didn’t want to look different to other people.

Rosie wore a bandana when she worked part time in a souvenir shop but she felt it was better to wear her wig when she worked in an accountant’s firm.

Age at interview 18

Gender Female

Age at diagnosis 12

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I have had sort of two part time jobs, sort of recently. The first one that I had was sort of at a souvenir shop and I didn’t have, I didn’t have a wig at that point. So I would wear a bandana and on the sort of really hot days I sort of would ask mum, you know, Do you reckon I could get away with not wearing one?’ And we eventually decided that that probably wasn’t the best idea, mainly because I think people can feel quite intimidated if they were walk, to walk into a shop and see that the cashier is you know, teenage girl that doesn’t have any hair a lot of people would feel sort of quite anxious, I think. And again, sympathetic sort of like, Oh no, this poor girl, you know, she’s got cancer. She’s working in a little shop. Well, be nice or go to the other cashier,’ so I generally wore a bandana. And then the second, the job that I’ve had most recently was part time work in an accountant’s firm. And because I’ve had a wig, I’ve worn, I’ve just worn it and they’ve had no reason to suspect otherwise, because it wasn’t in that professional environment, it wasn’t suitable to be chopping and changing between short hair, long hair, no hair, you know, it was-, really it was you decide what you’re gonna wear and you stick with it.

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Hannah says a new job would involve thinking about what hair she would wear and whether to tell people she has alopecia.

Age at interview 21

Gender Female

Age at diagnosis 16

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I always think of what the job would be and like what I’d do with my hair and it, like with everything, I always have to think out what I’d do. What hair I’d wear. If I’d wear hair. If I’d decide to tell people and change my hair up and that sort of thing can be tricky and things like I couldn’t do anything that would require me having my hair tied up high, cos I couldn’t, I couldn’t do that. And so, or having my hair really tied back, I’d have to find a different way around it. And so it makes you think about that. But no, I’ve not thought too much about it just yet. But it’s like with everything you have to approach something with a, like any situation with a certain kind of plan as it were and like with college I decided to wear wigs and then y’know people knew I wore wigs and so I changed it up. So you’ve got to kind of assess how you feel in that situation.

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Most people thought it best to tell people at work about their alopecia. However, raising the topic of having alopecia could be difficult in practice. Kayla said it can be hard to bring up her alopecia in conversation. Grace put information about her alopecia on her Facebook page which helped her to explain her condition to people at work. Emma, who works as a physiotherapist, told her colleagues when she started her job. She now feels confident enough to wear a bandana rather than a wig at work. Annie Y was working in her first job since finishing university and hadn’t told her work co-workers. She had always thought that when she got her first job, she would tell people but she wears a wig of real hair and says she wants to “fit in”.

Krista worked as a bar manager when she had rapid hair loss. She told the people she worked with and regular customers that she wore a wig but didn’t talk about it to strangers.

Age at interview 23

Gender Female

Age at diagnosis 22

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So once had my wig on obviously nobody could see and I took photos of my hair if people had asked me, the people who I was close to at work I’d show them and everybody was really surprised when they saw how much hair I had actually lost in the end, sort of by the end of May. It, everyone was really surprised at how much I’d lost. But they were all really nice about it and they just kept telling me to stop stressing and most people said they couldn’t tell I had a wig on and even now other customers who’ve come in who didn’t know and they said Oh you’ve had your hair extensions out,’ and when I’ve admitted to them that no actually it was a wig all of them have said they didn’t have a clue. They didn’t know, they would have never known unless I had told then it was a wig. I’d say there was only one person who, one lady Id never seen her before and she come in for a drink one night and she was looking at my hair funny and I looked at her and she just said Oh’ she just said Oh I was just, your hair’s really shiny that’s all. And I thought, cos I’d say she was the only person who I thought to myself she knows I’m wearing a wig. But I was quite open with people at work to say I was wearing a wig, it was just, it was sort of people I hadn’t seen for a while I’d never, or strangers I’d never admit to them that I was wearing a wig.

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Becky works as a paralegal. Her co-workers know she has alopecia and are supportive.

Age at interview 23

Gender Female

Age at diagnosis 14

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I’ve been lucky in that people I’ve worked with have always been quite close to, so I worked-, before I started this new job, I worked with a really good team and at the moment I’m with a really good team. And if you’re comfortable with somebody and know them well enough, you can joke about it. It’s when you don’t know somebody well enough that it bothers you. Or if you know somebody well enough, they’ll know that I’d rather be pulled to the side and said, Becky, just grip your hair down there because you can see it, rather than make a big fuss of it and so, no, cos everybody I’ve worked with has always understood it and known about it and never-. But I make it a, a point that it’s not a big deal.

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Some kinds of jobs ask their workers to have their hair styled in a particular way. Kitchen work can require the person to tie their hair up or wear a hair net for food safety. Jobs which involve serving customers in hospitality and retail often also require staff to tie their hair up or have it covered. Some people whose head hair loss was patchy or who couldn’t tie their wig back were worried about how they would manage this.

Before Kayla wore a wig, she worked in a few hospitality jobs which required her to tie her hair up. She found ways to manage but felt nervous about it.

Age at interview 20

Gender Female

Age at diagnosis 4

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When I first started working, obviously, I got nervous, this is before I had wigs because I can tie my hair up with wigs but before I couldn’t because it was completely bald under here [gestures around bottom of scalp]. Like from like, it was like a thing so I literally couldn’t tie it up so yeah, it was kind of nervous, if I ever had a job and they told me to tie it up and I just would like have it, like yeah, it just made me self-conscious cos even if I tied it low, it would, you could see, you know, it just made me kind of nervous. So I think it all worked in quite well with timing of me getting wigs and stuff but yeah, it was kind of like, it limits you quite a lot to what you can do just because yeah, I don’t know. It’s-, you can’t, if your work wants you to tie your hair up then you have to tie your hair up [laughs]. It’s not like a I don’t want to. You have to, so kind of, like I just put off a lot of things and just didn’t do things to avoid conflict I guess, yeah.

What kind of jobs would they be that they’d request you to?

Hospitality, so like waitressing and stuff. Yeah, I worked in a pancake house so mainly like in the kitchen, so I’d have to kind of tie it back. Sometimes I could wear hairnets, which was a little bit easier to hide, so sometimes I would wear a hairnet or something but yeah, it was like working directly with the food and food prep and stuff so I had to have it back. Yeah, I did a few hospitality jobs. Generally, that was, I was, I worked at Subway as well [laughs] and so thankfully you wore hairnets so that was alright but, yeah, just yeah, mainly hospitality and like yeah, they generally want it right off your face and I couldn’t really do that. So it was like, made me really nervous. I made it work but just like little things like that.

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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.

Age at interview 20

Gender Female

Age at diagnosis 19

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I know a lot of people that work in shops where they have to have their hair like scraped back into a bun, and it’s part of the uniform and I wouldn’t be able to do that. So I don’t really know the kind of, the rules with it and, and how to kind of navigate that situation. So I wouldn’t say I’m avoiding them, I mean I feel like I need to kind of work on getting more comfortable with things before I can commit to having a job because it’s definitely something that I need to be able to know if I’ll be able to go in every time that I have a shift, but people do have difficulty with deciding whether to wear wigs or not really.

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.

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Grace had to wear a skull cap when working in a hospitality job which she said was like a comfort blanket because no-one could see her hair loss.

Age at interview 18

Gender Female

Age at diagnosis 10

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I’ve had two jobs, two main jobs. I’ve had a job in a golf club, in like the kitchen type of area, so is it never really been a problem because at that point I still had hair, so I just and you have to wear it up anyway; so, you had to wear it up and that was just matter of fact, so it didn’t really matter what it looked like. But now, I started the job that a part-time job that I currently have, last February, so I’ve been there a year now, but at the beginning I still had my own hair. So, I think it was kind of good in a way because I have to wear a hat, like a skull cap, I think they’re called, because it’s in food service. So, I have to wear that anyway, so that was kind of almost like a comfort blanket because I knew that once I got in work I could put this hat on and nobody they could only really see the bottom kind of ponytail bit of my hair. So, that was quite comforting.

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For some jobs, wearing wigs or hair extensions was uncomfortable or not possible. Beth worked in a cocktail bar and says it was very hot wearing a wig. Meghan worked as a part-time lifeguard while she was a student. She found it daunting to get in the pool without her hair extensions in but felt strongly that alopecia shouldn’t affect her work choices.

A few people worked with children. When Arti started to develop alopecia, she was working as a classroom assistant and she sometimes took days off because she was feeling very anxious. Elizabeth works with young people and says she sometimes worries about how they might react to her alopecia.

When Ben worked in a supermarket, young children used to ask why he didn’t have any hair.

Age at interview 18

Gender Male

Age at diagnosis 14

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I get little kids sometimes staring and they stare at everyone but, you know, lit-, kids. And I used to work in a supermarket and I used to hear kids like whisper to their parents in a-, Why does that man have no hair? Or something, you know. And I-, it used to make me feel a little bit weird I guess but I didn’t mind like. And some parents used to be horrified. You know, some-, I had a kid come up to me once and ask me where’s my hair. And he-, he was so little and I was just like, Oh I left it at home. I didn’t bring it in today. I’m sorry. And he was like, Oh cool, ok. And his parents, you could see the parents look of relief cos I didn’t feel-, I wasn’t offended but I think some people are just interested. I don’t think it’s the baldness, it’s almost like the no eyebrows and it just looks a little bit, you know, a little bit odd. I reckon if I had eyebrows and eyelashes, people wouldn’t- wouldn’t really question it as much. I definitely think it’s through being younger as well cos obviously I’m a stud-, well I’m obviously not a student, but I’m obviously not old enough to be naturally bald if that makes sense. So some people do ask.

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Rosie’s wig used to fall off when she was cycling on her paper round so eventually she wore a bandana or nothing at all.

Age at interview 18

Gender Female

Age at diagnosis 12

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I had that newspaper round sort of throughout the whole time of going from wearing a bandana to wearing a wig and then consequently when doing my paper round going back to wearing a bandana. And that was mainly because when starting my paper round with a wig I would find that if it was windy or if I was going too fast, it would start to slip or I would feel it sort of giving up and I’d think maybe I should slow down a bit. And then, also, because of the wind, it would blow around a lot and it would tangle and get quite unmanageable, so I would often just like eventually I gave up and just sort of left it at home and went out with my bandana if it was raining or without anything at all, if not.

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The emotional side of alopecia could affect some people’s career choices and work experiences. Laurel says it could be hard working at a beauty store when she felt insecure about her appearance. Annie X and Imogen were unsure about careers in dance and drama because anxiety about their alopecia affected their confidence and how they felt about themselves. However, both were taking steps to overcome their worries: Annie X had started private dance classes and Imogen is hoping to follow an acting and modelling career.

Imogen feels more confident now and hopes modelling will raise the profile of alopecia.

Age at interview 17

Gender Female

Age at diagnosis 7

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When I first started modelling, I applied for an agency and, even though I’m not with them anymore they sent me to [photography studio], I think it’s called, in [city]. I basically had my test shoot and it was over and done with as far as I was aware, so we went into a little room, me and my Mum, and we were talking to this lady who worked there about what my reasons were and everything for starting modelling. And I mentioned to her my reasons and that reason is to help people, other people with alopecia, because I myself have alopecia. It was obviously a longer description than that but I’m trying to keep it simple. Then she was like, Really, well why didn’t you say? We will get you back into the studio. Then I was like Ah, okay. So I went back into the studio, they closed down for about an hour and a half so there was just me in there and, yeah, I just did some photos. That photo that I showed you included, yeah.

So the first test shots had been with your wig?

Yeah.

And then the second ones were- [without your wig]?

Yeah.

Totally unexpected, I didn’t think that would happen but I’m glad it did.

I also use Instagram and that helps me a lot when I do like a photo shoot or I need to like spread awareness about alopecia, I would just put a post up a photo. Yeah then people start following me who have alopecia.

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Money and alopecia

Young people talked about the money they spent on managing their alopecia. Costs included: prescription medicines (for those who needed to pay) private medical appointments...