Beth

Age at interview: 24

Brief Outline: Beth has had different kinds of alopecia areata for most of her life. She found it most difficult to lose all her hair, including eyelashes, at the age of 20. Beth describes her feelings about having alopecia as involving both “peaks and troughs”.

Background: Beth is 24 years old and she works at a charity. Her ethnicity is White English.

More about me...

Beth has had different kinds of alopecia throughout her life, beginning with two patches on her scalp when she was a toddler. Since the age of 11, Beth has experienced alternating periods of hair loss and regrowth. Beth found that she could cover the patches with different hairstyles and headbands during secondary school. However, this was not possible when she lost all of her hair, including eyelashes and arm hair, at age 20. Beth says losing her eyelashes was especially tough as her eyes would become swollen and other people often noticed there was something different about her face. Her eyelashes have grown back and she has regrowth of hair on her legs and arms. For the last 7 years, Beth has worn wigs and she had her eyebrows tattooed on. Beth doesn’t feel that her experiences fit neatly into one category of alopecia areata as she has changed between areata, totalis and universalis. Beth’s doctors and her mum think that stress is the reason why she experiences hair loss, although Beth isn’t convinced by this being the explanation.

Beth was referred by a GP to see a dermatologist about her alopecia. She was prescribed minoxidil to rub onto her scalp and she bought special hair growth shampoos to try. These treatments didn’t help and since then, she’s only returned to the dermatologist whilst at university to get a prescription for NHS wigs. However, because this involved long waits, she prefers now to buy her wigs herself. Beth tends to order her wigs online as this gives more time to think about options whereas there can be pressure in a wig shop to decide on the spot. She also thinks that the wigs available in the shop are more suited to older women. She says that it’s hard to find wigs at the right length so that they will last without the hairs getting damaged too quickly. She prefers longer, curly wigs as these are like her natural hair style and she opts for wigs with fringes to cover the cap band. Beth says that the popularity of hair extensions means that people are less likely to think it unusual if she changes different hair length wigs from one day to the next. Beth finds that one downside is that the wigs can be itchy and hot; for example, this is an extra thing to think about in relation to hobbies such as going to the gym.

Beth describes her feelings about having alopecia as involving both “peaks and troughs”. She says that losing your hair can make you feel very vulnerable and there are occasional times when she feels low. Beth had a close group of good female friends at school, but she found having alopecia much harder to cope with when she moved to university. Being in halls was especially difficult as she felt unable to take her wig off whenever she wanted to. Beth finds that romantic relationships can be hard as she can be affected by alopecia-related insecurities. Overall, though, Beth copes well with alopecia and she feels strongly that you can’t let alopecia get in the way of doing the things you want to do. She adds that having alopecia means that “you’re experienced in it, you’re not actually defined by it”. She tends to look online when she’s in a “really good place about it” and she’s particularly interested in knowing if there are clinical trials for treatments going on. Beth has looked at a number of blogs about alopecia but finds these can be tricky to relate to as many are focused on individual experiences of quite short-term alopecia. Beth adds that self-depreciating language used by others with alopecia can also be upsetting to read as it can feel like a direct comment.

In Beth’s experience, the most helpful professionals for advice and support have been the owners of the wig shop she used to visit whilst at university. Beth’s advice to other young people with alopecia is to talk to others and not let it stop you from doing anything that you want to do. She feels that it’s important to recognise that there can be impacts on the family of a person with alopecia and that relatives may need emotional support too.

Beth started off with bald patches and then total hair loss on her head. Although she now has eyelashes regrown, she’s also noticed patches of leg hair missing.

I didn't fit into any of like-. So you've got categories for alopecia. Mine changed, all the way through. So I didn't really fit into the category, I was like 'well I'm probably more that, than that.' But then I lost it all, so I was like, 'okay well I'm that now.' And like even if you asked me now, I wouldn't be able to- I know there's like alopecia totalis, I wouldn't be able to tell you the others. Yeah. I don't know whether that's just cos it's like I haven't looked at it, because I don't want to or I don't really know. I rarely- I rarely researched it, to be honest. If I did, it would be because I was in a really good place about it, and it would be like 'okay well I'll just see what's out there’.

Beth isn’t currently using treatment for her alopecia, but was previously offered topical immunotherapy.

They offered to irritate my scalp, so it would be like a huge-, from what I can remember, it would be like a huge allergic reaction. And you weren't allowed to- you- basically it was- the end line was I wouldn't be allowed to wear my hair and it would be extremely uncomfortable, and it might not work. So, and he said like, “The likelihood of it not working is quite strong.” So I was like, “Actually, well, is it worth me not doing, or going out, or seeing anyone for like three weeks to have a really itchy head and really crap time of it? Or to just deal with it?” So, because it probably wouldn't work anyway.

Beth keeps two wigs, one with curly hair and one with straight, so she can vary her look without making it obvious that she has a wig on.

I like longer curly ones. My hair naturally was really, really curly. So I find it really weird with wearing straight ones. But it's quite nice to be able to have like two at the same time that are similar, so you can be like 'I'm going to straighten my hair today.' And like no one knows any different. If you have like fringes, it kind of takes the thing away of having the line [points to scalp]. Because obviously sometimes it can be- if I pulled this all back, it would be really obvious that it's a wig. Or to me, it would be, some people not so m- don't pick up on it at all, but. Yeah. So yeah, a fringe tends to look better as well. Obviously they're quite full, so most people just think- and when you get them, they're really shiny as well, so most people think like 'oh my god, she's got really good hair.' Or straight away ‘it's fake’. It's like things like lighting can make a big difference as well, so if you're in a really highly lit place and it's really shiny.

Beth talks about the process of washing and drying her wigs. She shares what she has learnt about keeping wigs looking good for longer and smelling fresh.

About a month, three weeks, I wash it. Which it is gross. Then every-, well every few nights I kind of brush through. If it's curly, you've got to kind of just do it with your fingers, because otherwise it ruins it really quickly. And then put a spray on it before you go to bed, so it's ready for you in the morning. If I had- say I went out, I'd always put like a conditioner spray into it, so it smells a bit nicer, it's a bit fresher as well. Yeah. Washing it. It's quite-, it's one of them things that I learned to do gradually, so, through kind of default. So if you touch them when they're wet, they tend to like get ruined quicker. So you have to like get it wet, you're not allowed to wash it like you do with your hair, you have to just like swirl it in cold water. And then dab it with a towel. Then let it dry. And then put like conditioner on it afterwards. Yeah. Like it's a bit weird when you wash it, when you literally say, “Oh, I can't come out, I'm washing my hair” [laughs]. Because you can't [laugh]. Because if you wear it, it tends to go- and you get it on your clothes or something, it'll go horrible. So yeah, it does take a whole evening kind of to wait for it to dry overnight. So that way it's, you almost have to like schedule it in [laugh].

Beth had her eyebrows tattooed in the Philippines some years ago. She is thinking about getting them topped up.

So when we were out in the Philippines they were really, really cheap to get done. So we got-, so I was just like, 'actually, I'll just do them' cos I think it was about £100 or so and they last for about five years. It was such a weird-, it was a really weird experience. Cos obviously the added thing of none of them spoke English [laughs] really. So, that was quite peculiar. What did they do? They like laid me down, and put this like numbing cream on it, that like- I think it swelled it up, and then they drew the stencil on and said, "Okay, this is what's going to happen, are you happy with them?" Which obviously at the time you're kind of like, "Well I'm not really sure, but yeah, go for it." And Yeah. So they, yeah. It lasted only, it was only a few hours. It didn't really hurt, it kind of felt like a toothbrush on your face. At the corner, it did hurt slightly, but it was only a little sting. And then the worst bit was, was when afterwards it kind of clumped up. And went all kind of like crusty. But it was the colour, and like you weren't allowed to touch it, or sleeping was quite difficult because obviously if you sleep on your front and half your eyebrow goes, it's a bit like 'oh, now what have I done?' [Laugh] I wasn't, you're not allowed to go like swimming or anything like that with it. Yeah. And then it kind of, the scab gradually fell off. And then you had eyebrows [laughs]. Which was quite nice. But yeah, I would-, I'd recommend it to anyone. They're really, yeah, good. And obviously then you don't have to worry too much about getting up in the morning and drawing them on, and they're always there. So, yeah.

Did you say that you're thinking about getting them topped up again?

Yeah. Just cos they, yeah they gradually- I think it's like a tattoo, they go down in shade. So at the moment they're quite purple, so I'm like drawing back on with just like eyeshadow almost, or whatever. But yeah, so I'm going to go back and top back up, fingers crossed, again [laughs].

Is that your only experience of tattooing or have you had before and after?

Yeah. Yeah. Yeah, I've never had a tattoo, so [laughs]. Yeah, but. Yeah, it was cool though. And it's a nice thing to- it made a lot of difference to how you feel, as well. So it's always like people are like, "Arr, your eyebrows look nice," like, "Thanks" [laughs]. Yeah. So it's, yeah, nice.

Beth worried that wearing false eyelashes would stop her eyelashes from growing back.

When I lost my eyelashes, I could put fake ones on. So it was kind of like they were still there. But then I got really worried that if I put fake ones on, and then you know, they always- like a few tend to fall out when you do it, so I then stopped doing it, because I thought actually you might be killing the new baby ones coming through. But my eyelashes have only really got back to probably what they were from four years ago. So it was- took a long time. And that was really- that was one of the worst things to lose, out of- like even like your hair, you can cover up. Eyelashes were really hard, because it's an obvious thing. Especially when you don't really wanna wear permanent eyelashes, to have gone, so-. And like things get in your eye, and stuff, and that [laugh].

Beth talks about the challenges of joining in with activities like scuba diving.

It is [sigh], it is very emotional. You-, I tend to go in different waves with it. So at the moment I'm fine with it, and just live with it. I always say, "If anything pops up and they say ‘oh you're not doing it because of your hair’." That annoys me. So I'm like, "Fine, I'll have to do it." So like say, "Oh yeah, you're not gonna bungee-jump." Then if I attribute it, I'm not doing it because of my hair. Does that make sense?

Mmhm, mmhm.

Because I had it with like scuba diving. I went out to Australia, and I was just like ‘I really don't want to get on a boat full of people, with no hair on. And obviously my hair's up in a locker somewhere, who anyone can get to it’. Yeah. So it's all them panics, that kind of you get quite anxious about it. You do feel kind of- cos everyone just looks at you and thinks ‘oh gosh, what's wrong with her?’ [Laugh] straight away. So yeah, it's not- it's not very nice at all. But the actual- yeah. It just- yeah, so that- but then from that bad experience, usually I come out of it feeling really good. Cos it's like ‘actually I did that and it didn't bother me’. So you kind of have to tackle them bad bits.

Although Beth found it difficult to tell her first boyfriend that she had alopecia, her boyfriends have always been very supportive and understanding.

Boyfriend-wise, I didn't tell- my first boyfriend I had like properly, I did not tell him. Until about eight months in. We were together for a few years. And basically I- like you really worry about it, build up about it, and like I've learned now that it can't become a thing. It's gotta just be what it is. So before, with him, I'd built it up so it was such a big thing to me, about telling him. And in the end my dad was just like, “You should know, Beth's got alopecia.” And he was like, “Why didn't you tell me?” [Laughs] Yeah. And they don't really think- luckily I've never had anybody that's been like, “Oh my gosh, that's gross.” Yeah, the next one was just kind of- I went out to Australia and was like, “Oh by the way, did you know I've got alopecia, so I won't-.” And then he was just like, “What's that?” [Laughs]. Then once I explained, he was like, “Oh yeah, that's fine.” Like, he didn't worry about it at all. And he was really, really supportive about it, like. Yeah. And just like if anything ever happens, or like because events do happen where it's like, it falls off. Or when it's really windy, you kind of like have to hold on for dear life, as well as trying to hold umbrella and bags at the same time, it's not great [laughs]. But yeah, things like that, he was really, really good with. But yeah, it's just- most of the time they're fine. It's always that unknown thing of how they’re going to react, though, that's worse. Yeah. But I don't know whether it's the mentality that I've always been like 'I'm never going to let it get in the way of doing it'. Before, I was probably more like 'oh, I don't really want to tell them.' But now it's like 'well if they don't like me, it's me, they're not worth it, they've got to kind of get lost a bit.' So, yeah. But yeah, it is hard. And obviously you are limited in things that you can do. Like when you're seeing someone, and they're like, “Oh, do you want to go- I don't know - like swimming, or kayaking, and things like that?” It's like 'but what happens if the boat turns over and then my hair falls off?' Like then you've got to think- kind of judge it as to when you have that conversation.

Starting university and moving into halls made a big difference for Beth. It could be difficult to get the privacy to relax without her wig on.

I was really lucky to have a tight set of girls. They’re all really fine about it. They don't-, yeah. It's the same, like everybody has their issues. They all had bits that was wrong with them, or family and stuff, so. Yeah, that way it was quite comfy to have. Cos there's only, what, five of us or so. So they all knew, like if we have sleepovers or whatever, take it off and just like oh, rub my head [laughs], that kind of thing. Like they were fine. And really, really good about it. University was a lot harder. Coming into halls, that was just like a whole new ballgame. Because obviously everybody- just things like you'd come in- it would be the same actually when you're living in houses afterwards. Like I always like to feel comfy. So when I come through the door, usually I just- the first thing that comes off is like probably my hair. It just gets chucked anywhere [laughs], half the time. With uni, you couldn't. So in halls especially, when it was new people that you were coming across, you had to kind of keep it on all the time. And then my only kind of respite as such from it was when I was in the shower. And that was like-, and then straight back on with it. Cos obviously everyone has their doors open, you're walking in between. If someone walked into my room and was like, "Beth, why is your room locked?" It's just like, 'oh, I just wanted ten minutes without my hair on.' Or something like that. So that way it's like- it gets in the way a bit. But again, you just can’t let it. So, and it’s the thing of like going abroad as well, the heat difference. I'd always choose like where I go on holiday and who I go with, I think about it more because it is a worry. Obviously you try not to, but if I was to go like to New Zealand when it was really, really hot, I'd really struggle. My dad lived out in the Philippines, I wouldn't be able to wear any hair at all with that, because of the humidity and it is just so hot all the time. Which weirdly my hair kind of started growing back, when I was out there. But I'm not sure if it was like the humidity and the heat or something, I'm not really sure. But yeah, you did notice a lot of difference in growth then. But yeah, I couldn't wear my hair. So now, I do want to go travelling. But I'd probably avoid-, or choose really like be quite picky about who I go with because you've gotta be like, “Oh, hang on, let me just put my hair on to take a picture.” [Laugh]. And then I take it back off again [laugh]. So, yeah. But they must cope with it, so. I don't know how [laughs]. But they must do.

Beth buys cheap synthetic wigs from the internet which cost between £30-£50. She hasn’t ever bought expensive wigs.

The actual wigs themselves cost-, well some of them can be up to like hundreds of pounds. Mine only tend to last like six months, tops. So I just buy kind of cheap ones on the internet, that are usually about £30 to £50 each. So say you're doing that what, twice, three times a year. It does add up slightly. But then I don't have to buy shampoo each week or things like that. You do have certain- like a conditioner and spray, and like fibre oils to put on it. But they-, yeah. They're about £5 a bottle, or so. And they tend to last a long time, so that way it's quite good. You can style it exactly the same. But yeah, certain wigs are certain-, like different. So something like this one, I can straighten as well if I wanted to. I don't like doing it, because it ruins it. But, yeah. So you can do different styles. And obviously like the expenditure, you can buy stuff to put into it, but. Yeah. Like if you wanted to, you can go and get kind of wigs that will stay on through anything, that are really, really comfy to wear, that tend not to kind of deplete as quickly as such. But they're really expensive, so. Yeah. Obviously that's a lot of money going towards something that you're not a hundred percent sure if it'll actually last, so. Yeah. I've never had one [laughs].

Sometimes reading other people’s posts on online forums can make Beth feel worse.

Obviously you want- like deep down inside, you hope that your hair's gonna grow back. Like now I'm kind of getting to the point where it's like 'if it doesn't, it's fine.' But it is a horrible thing to deal with. Seeing everybody online with theirs tending to grow back is quite-, it’s not nice to see. Or, and I suppose it's that thing of accepting it as well, if people have the same thing and you see the same thing, then yeah, it's not nice to see other people being like, “Yeah, mine hasn't grown back either, it probably won't now.” I really struggle with if people- like there was a few people that were really quite depressed on there. It's like 'well you just can't let it get you like that, because otherwise you will become quite- very, very like to yourself and not really experience anything if you don't do it.' So, yeah. But yeah. You’ve gotta- some people are quite- I don't know. It's- the words they use as well. I don't know. I don't think I'm explaining myself very well. If it's very kind of like [sigh] direct almost. Them talking about their, “Well I'm bald, I'm ugly, I've no self-esteem, like I feel like a monster.” Things like that. It's horrible to read. So it's like 'actually I don't want to read this any more because then it kind of reinforces to yourself that actually like ‘ergh, this is what I'm like’. But, yeah. Does that make sense?

Yeah. I think it's a really good point as well. That, you know, even if that’s somebody's feeling about themselves, it has effects for other people that can read that, and so on.

Yeah. Yeah. Cos it- that's why you have to be so careful what you say and how you put yourself. Because like for somebody else- every-, like I said, every month I'm different about how I feel about it. And like if I have a really bad month where I'm in a really bad place and then you see-. Like I can remember watching Stardust, the film. And when all her hair falls out, sometimes I'm just like 'well, this is awkward,' and I laugh it off. Other times I could be in floods of tears watching it. Kind of it changes completely. So if people online and things like that and do say things like that and you're in the wrong place, it is, yeah, a horrible knock-on effect.