Kayla

Age at interview: 20

Age at diagnosis: 4

Brief Outline:

Kayla is 21 and has had alopecia areata since she was 4. She grew up in New Zealand and recently moved to the UK where she has started attending a local support group for others with alopecia.

Background:

Kayla is 21 years old and works as a data administrator. She is single and her ethnic background is White New Zealander.

More about me...

Kayla is 21 and has had alopecia areata since she was 4 years old. She grew up in New Zealand and recently moved to the UK. Up until the age of 10, Kayla was mostly able to hide the small bald patches with the rest of her hair and by being careful about how she moved her head. Kayla’s alopecia had much more of an emotional impact for her as she got older and as the bald patches became bigger. She used Rogaine (minoxidil) in her early teens but stopped because it was unclear whether it was working or if other factors were responsible, as new bald patches developed even as some hair grew back. Much of Kayla’s head hair has now fallen out. She started wearing wigs in her late teens as her hair loss became greater and she recently had her eyebrows tattooed on. Kayla described herself as having accepted that her alopecia cannot currently be cured and she has not visited a GP or dermatologist about her alopecia whilst in the UK. 

Kayla’s auntie owns a hair salon in New Zealand and has helped her both emotionally and practically with her alopecia over the years. This included cutting Kayla’s hair when she was younger, finding and purchasing wigs, and applying/removing the wig tape. It continues to be difficult for Kayla and her auntie to find consistently good quality wig supplies and this is particularly pressing as Kayla sleeps in her wigs at night and so their lifespans tend to be shorter. She also uses a prescribed ointment for her scalp as she finds that the wig tape now irritates her skin, making it seep and very painful. 

Kayla described some of the ways that having alopecia during her teenage years impacted on her. This included: the upset of comments or behaviour by peers, especially girls, in the “catty stage” of adolescence; deciding to change secondary schools “to start afresh”; and her anxiety about telling her boyfriend that she has alopecia. Moving to the UK has meant a number of changes for Kayla, including that she now has to remove and reapply the wig tape herself. Kayla knew only a few people when she first moved to the UK and it was especially upsetting to spend time with those who were very appearance-conscious as they tended to make insensitive, superficial comments about their own hair. She has also found that different employment settings, including in the UK, can bring other sets of challenges. This includes: dress codes of tying back hair for some hospitality jobs; the difficulties of telling colleagues about her alopecia; and negotiating time-off for important appointments (such as for having her eyebrow tattoos), when she needs to let her scalp heal or for personal days when she feels particularly low.

Kayla learnt about a local support group for alopecia in the UK and had attended one meeting so far at the time of interview. She found this experience to be very mixed and emotional as it had been quite depressing but there were also some positive aspects and she planned to go to subsequent meetings. She was keen to learn new things about alopecia and to hear from guest speakers invited to present at the support group. Kayla felt that, prior to meeting other attendees with alopecia, she had “been so alone in it”. She was also able to offer supportive advice to some other young women who had very recently been diagnosed with alopecia or who were otherwise struggling with alopecia in various parts of their lives, for example, with romantic relationships. She felt that there should be more support available which focuses on young people with alopecia because this can be an especially “vulnerable” time with a lot of uncertainty about the future.

Kayla’s unsure if her alopecia type is changing to alopecia totalis.

Basically, it’s all off my head now, which is really weird because areata is normally not. But- and I’m starting to lose my eyebrows but with that you can-, that can happen even with areata, that you can like start to lose everything but I don’t if that’s like changing into the full one or if it’s patchy, I don’t know. But yeah, now I’ve got tattooed on eyebrows. 

Kayla worried that others might see bald patches on her scalp, which affected lots of things she did.

I mean before I got wigs, I always used to think like it’s quite weird, even like when I’m in school, the way that I sit at my desk, purely because someone behind me, if I look down or like, it was like that much integrated into my mind, it was like the way that I stand and the way that I turn my head like sometimes. So it was kind of like 24/7, I couldn’t really forget about it [laughs]. Yeah, so it was kind of annoying because it was like, even little things, it’s like I just wanna go a day without thinking about it. I don’t know [laughs]. Like now I can walk down the street and have the wind blow and it’s okay. So things like that so it’s like, but back then it was like, if it was a windy I would sometimes have sick days because I couldn’t hide it if it was windy. And you, I guess you never know what way the wind is going to blow. If it blows the wrong way then and it might be in front of the wrong person who’ll be mean to you about it, and so on. It’s just kind of like a lot of things like that or, yeah, again just like any form of swimming or anything like that. Just little things just, I just automatically, it meant I didn’t do [laughs].

Kayla says there’s a lot of uncertainty about alopecia causes and triggers.

I mean the thing is with it is there’s so many different theories and it’s kind of like it could be any of them. I mean a lot, a lot of people say it’s hereditary but triggered by stress and like all these things and I guess you can say, “Oh well, this time was stressful.” But I guess you can say that about anything. So I don’t know. I mean I guess I kind of had a stressful childhood with like my parents breaking up and things like that young and stuff but, at the time, I can’t really imagine me knowing, so I don’t really understand. Like I mean, obviously, it was stressful but I was four so I can’t have known that much, so I don’t know. It’s kind of like you could say that but I guess you could say that about any child. I mean a kid might not watch their favourite TV show and that might be stressful for them, so I don’t know. It’s hard ‘cos there’s so many different theories and then they say, “Well, if it’s hereditary, then I was going to get it anyway wasn’t I. It was just waiting for a trigger,” like I don’t know. So and it’s strange how it’s never-, you’re never born with it, it comes eventually. I find it quite weird like, especially since it’s only getting worse. It’s not-, I can’t see it growing back, if that makes sense. Like so it’s, basically, my whole life but it came at one point, which doesn’t, sounds a bit confusing I guess, so yeah, so I don’t know. Yeah, the cause, I’m kind of just am not really bothered about the cause ‘cos I’m more interested in how working with it, if that makes sense.

As she has become older, Kayla has felt more “happy” in herself. She thinks the alopecia has made her who she is.

I feel like I’m, I don’t know how to explain it, I feel like as I’ve gotten older, I, I look back and I think I’m a better person because, well, not better person, but like I wouldn’t be who I was without it and I think like, ‘Oh if I had hair.’ This sounds stupid, like if I had hair, it’s actually, I would have-, I think I would have turned like ‘cos of the schools I went to and like things like that, like I changed schools, at one point, just because it was like everyone seemed to know and I wanted to like start afresh, and so there’s been a lot of occasions where I just wanted to start afresh. So I think the people I’ve met along the way, I don’t know, I think I just realised that, yeah, I’m me because of it. Even though, obviously, I’d like it to grow back – it’s kind of like I’m more than happy as I am like, yeah, I don’t know [laughs]. If that makes sense. Like it’s just hair. It’s not me, kind of thing.

Kayla describes the process of changing her wigs regularly.

Now I’m, yeah, going to go travelling, well, I’m still going to work and travel but maybe, at some point, if I get a good enough wig that can last me a longer period of time, then I could go on like a big trip. But, at the moment, the quality of them just doesn’t stay long enough for me to do like a big trip, so I need to have like, I need to be based somewhere, if that makes sense.

I mean I could carry my wigs around but I guess that would just kind of, it would be too hard to change them and things like that ‘cos I need like overnight for my hair to like, for my head to settle with the tape and stuff up there. ‘Cos it started getting, reacting to the tape after a couple of years so now I have to be a bit more careful and change them more regularly. So I couldn’t really go, at the moment, I couldn’t really go on a trip longer than two, three weeks. I mean I could, if I was in like a hotel or something I suppose, but yeah, just depends I guess but yeah.

How did it work when you moved from New Zealand to the UK, in terms of sort of did you bring over lots of your?

Yeah, I because they don’t really last long, I kind of have one at a time and ‘cos we haven’t found a good enough supplier to buy bulk to have them in advance, we cut it pretty fine in between the wigs. Like usually it’s like got, getting really bad before I get a brand new one, so I brought one over or, yeah, I brought one over and wore one over and they were both brand new but they were really bad quality so I’ve been here I guess I think it’s five months now and they only lasted three altogether, like they were just really not nice. 

Kayla has tried out different wigs to see which stays nicest for longest.

It’s kind of touch and go, like I can make it work but generally, the longer the wig, the easier to maintain and just I guess. And what, I mean what we’ve experienced mainly is them shedding. So the first few, the first few years, we had these wigs that were amazing hair quality. I mean they stayed amazing but the hair would just fall out after two months, so they’re completely ruined after two months, whereas the ones we’ve got at the moment, the hair stays in like they don’t moult at all but the actual wig material stretches and so they start like sagging down and being really uncomfortable and the hair quality isn’t great. So it’s kind of like that other one that was too expensive to have to buy one like every month and a half to two months, so it was kind of like now it’s, we’ve kind of got the, we’ve got the wig right. We just need to get the hair right. So we’re left slowly trying all the different hairs and seeing what one stays nicer for longer.

Kayla describes when she first lost the hair on her eyebrows and began using make-up. She now has tattooed eyebrows.

I was like, “What? Nobody told me that I would lose my eyebrows.” So it was quite cool, I looked online and found this lady who does them. I just recently had them touched up. Like it it’s [mm] so painful, don’t voluntarily do it but yeah, it, it was that was not fun ‘cos it was kind of like I’d just got used to wigs and now this happens. And so I was just drawing them on but, because I didn’t realise what was happening until they got really short, I just left them and just kind of thought that, I don’t know, I just didn’t really notice them ‘cos it was quite gradual. Eventually, I saw people that I hadn’t seen in a while and they were like, “Oh, what’s wrong?” It was mainly this one [points to left eyebrow], like it was just one of them. I think that was the reason as well why it was so noticeable, people were like laughing, “Oh where are your eyebrows?” Oh, sensitive subject, guys.

But yeah, I don’t know, I slowly got better and better at drawing them on but then it started taking me like half an hour in the morning and it was kind of like, ah, so I looked into getting them and ‘cos they just kept falling out. Like this one’s [gestures to left eyebrow] got practically nothing now. It’s just a little bit of hair and then this one [gestures to right eyebrow] is the opposite, it’s got none here and all this so it’s like, I was like oh, just get them tattooed on ‘cos I was thinking of summer coming up as well. I wanna go to like Greece and stuff. I wanna be able to swim. I don’t wanna have to draw my eyebrows on every day and not be able to go swimming. So there’s always ways around it.
But it was, it’s expensive and it was quite, just not what I, not good timing but yeah, it all worked out. It’s fine now [laughs].

Kayla explains the challenges of not wanting to go swimming at school and college.

Some of the teachers like ‘cos obviously the principal and stuff would be-, we would tell before when I came to a school or something but generally, they don’t think about and they don’t really, like they would say, “Oh, when you go swimming, just wear a swimming cap.” And it’s like but nobody else wears one. I’d rather just not, you know. So it was just kind of like, I guess, because they were adults and now looking back, now I know it wasn’t like-, now I have this outlook, that it’s not a big deal but, when you’re a kid, it is. It’s like, it is a big deal. And it is kids, like they don’t, they can be so harsh and kind of thing. So yeah [laughs].

Yeah. With swimming at school, was it to do with like other people or was it also to do with like getting your hair wet and sort of things like that?

Yes.

And having to tie it back?

It was definitely like the whole day kind of thing. So like, if I had swimming in the morning, then my hair was wet and then dried wrong or something like it was a whole day thing, like if I have to do swimming. Then yeah, obviously, in the pool and then out the pool drying my hair like everyone would just be like [gestures hair drying] and like they would dry it how they want or they would tie it up in towels and stuff but I just couldn’t, like it was just like [facial expression]. So I’d generally try not to go under or something if I could avoid it and or I would just always ‘forget’ my togs [laughs].

So things like that, so, it was kind of annoying like in college I’d take, I, I like sports so I took like sports science classes and things like that but, when it came to summertime and it was like swimming sports, it was kind of like, “Oh, just wish I could skip this part.” And when I got, as I got older, less of the, less, like I’d tell, told the teachers less so it kind of was like they thought I was just didn’t care about their class or something but it really was just like I just don’t wanna tell you, like I just don’t wanna do it [laughs].

Kayla talks about not being able to join in with dancing and netball, which she would have loved to do.

Has it impacted on any sort of hobbies that you do like any other activities you’d like, you like doing?

Well, I would of, I used to do ballet and so I would of loved to have carried on dancing and things like that but, when it comes to exams and shows and stuff, you’ve got to tie your hair back or you’ve got to get dressed up and I don’t wanna be the one who everyone has to change their hairstyle, you know, everyone wants the matching hairstyle. I don’t wanna have to like be the one that’s like not matching or make everyone be different.

So I mean the first time I kind of took a chance was at that at that stage challenge and then luckily, that got sorted but the next year, I was just like a backstage prop. I was just like ‘I can’t do that again’. Especially, because like what if I can’t do the style that they want? What if they want a bun or what if they want, you know, so it was like one of those things, it was just like I can’t do it. I just won’t do it. So yeah, I would’ve loved to have like done dancing or I used to do netball and then tying my hair up got too much of a thing ‘cos there’s actually rules and you have to tie your hair up and I was just like, yeah, I guess it, like it limited me in that in that way, yeah.

I mean it’s not like a big deal now. It’s not like I was gonna be a professional netball player or anything but it’s just like when you like something, you wanna do it and I couldn’t. And also those kind of thing, you make friends through so it was kind of like, it was unfair that all these people would go to games and stuff after school and I was just like going home and. Feeling sorry for myself, as you do when you’re young, so it was kind of like, yeah. But I’ve never really let it affect my personality I don’t think, like I’ve always been happy so it’s just in the back of my mind, I’ve always been like damn it I wish I could do that. But you get over it, yeah.

Kayla’s aunt is a hairdresser who helped her to style her hair and created hair patches from extensions to cover areas of hair loss.

Then, I guess, going into my teenage years, I started losing more and more. But I have an auntie that’s a hairdresser, which was pretty convenient, and yeah, so as my hair started getting less and less, she started doing like crazy schemes. So like, at one point, we were-, well, to begin with, I just started back combing and like hair spraying like so my morning routine was like two hours [laughs]. And then she started like ordering like, oh can’t remember how she did it, I think she ordered extensions and then like made of these patches that I would stick onto my head, so I guess like hair pieces but to fit the bald patches and then I would just like kind of hair spray over. 

I grew up with my auntie and uncle so because she was a hairdresser, she was pretty helpful in everything that, if I needed like a haircut or stuff, I could just go to her salon after school, so it was kind of like that little bit extra less pressure ‘cos I guess, if you’re a kid without a hairdresser in the family, you’d have to go to a hairdresser and like then it feels like a-, I guess a bit real, when you have to actually-, so it was quite cool having that. And I think that as well kind of made people suspect less like when I had significant hair changes and stuff, I just had a hairdresser, so it just felt like changing my hair I guess. So but, she was pretty-, we’re pretty open about it. It wasn’t like a touchy subject. 

Kayla’s boyfriend didn’t know about her alopecia for several months. When she told him, it was “not a big deal” for him which made it easier for her to tell other people.

I’m still with my first proper boyfriend. Yeah, I never really had any serious relationships before that and he didn’t know for probably like the first three or four months and when I did tell him, it was over text. I couldn’t do it to his face but, yeah, so and it was just kind of not a big deal but, for me, for the first year I still felt like I wish he didn’t know because you just get worried that people are going to look at you differently I think. But yeah, it’s so nice having someone that knows that about you.

And then, after that, it kind of made me easier telling other people as well because it was like I know I had someone who had my back and didn’t care.

He tells me now he thought I had really dry hair [laughs] or a really bad scalp, when he touched my wigs [laughs]. So it’s kind of yeah, he’s only known me since I’ve had my wigs. So there’s that as well but I definitely, I just like stayed away from boys. I was like ‘no’, you know, especially when you’re young. People go through relationships and date all these people. It’s kind of like, it’s not serious, why, I don’t wanna have to tell them. And so then you just avoid relationships altogether but yeah, somehow I ended up with someone and it worked out but I think it’s, and this, I really don’t think it’s a big deal.

Kayla researched online and found a tattooist who did her eyebrows very well and at half the cost of other people.

She actually had a book so she takes photographs of everyone’s eyebrows that she does and she had like section in her book of people with alopecia, specifically areata, who get it done. So that was quite cool. I didn’t have to explain why my eyebrows were falling out. She knew and she has been doing it for I think 10 years and she was like half the price of anyone else that I looked online. And she, you go twice and then she gives you a free third time one to make sure that they’re perfect, like she’s really good. So that was good to just go and get that done and not have questions asked and make me feel like self-conscious about it. She knew what she was doing so yeah, that was good. I was pretty nervous turning up like, ‘oh my gosh, what if she makes them ugly?’ But we were there for three hours like just drawing them on and making them perfect so that was good, ‘cos I kind of didn’t know what to expect. I think, when people say, you have your eyebrows tattooed on, I mean you have like this image in your head, in your head of like ladies who’ve just got like black or like bad coloured eyebrows that have like faded and look terrible, so I was pretty nervous. But no, she’s really good. 

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.

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.

Kayla says good friends and partners will be supportive about alopecia, but it can be difficult to know who to talk to.

I mean possibly because like, for example, like, when I went to the meeting and then a couple of people that were new to it were kind of saying like their doubts of like what’s gonna happen next and things like that. And with the whole relationship side of it, like people like I don’t’ know, I think that people just need to know that people really don’t care that much, like in a good way – not in like people don’t care, but people aren’t gonna judge you for it or not be your friend for it. Like and some people as well, they’re just curious and some people actually care kind of thing. So you’ve got a be careful like ‘cos I, that’s happened to me a few times, I’ve told the wrong people and they haven’t done anything about it but it’s made me feel like crap ‘cos I thought that, if I told them, they would be there and then they weren’t.

Okay.

So you’ve gotta tell, you’ve gotta be careful people aren’t just nosy and that they actually just like wanna know because they want to get closer or be a part of your life. So you’ve gotta be careful there I guess. I mean it’s even now, I don’t really know when or who to tell and I’ll sometimes just wanna tell people because, I don’t know, yeah, it’s like, it’s just I think annoying having to keep the secret. It’s like you’ve got like a secret all the time.