Alopecia (young people)
Wearing wigs, scarves and hats with alopecia
Some of the people we talked to had tried to cover up or limit the visibility of their alopecia, such as by styling their hair over bald patches, wearing wigs, hair pieces, scarves, bandanas or hats. Others opted to having nothing on their heads. None of the young men we talked to opted to wear a wig. Ben and Michael felt it wouldn’t look natural and might draw more attention to them. Young people's decision about whether or not to wear something on their heads could depend on where they were going (e.g. social occasion, gym, friend’s house, work), if they wanted a particular look (professional, ‘rock chick’) and what felt comfortable at the time. Annie X chose to wear a bandana instead of a wig at school because the wig felt “fake”. Danny doesn’t like to wear hats or scarves as he finds them a “bit irritating”.
Many people mentioned backcombing their hair and using hairspray to keep it in place to cover up any areas of baldness, especially when they had quite small patches of hair loss. Michael also wore beanies (hats) at sixth form and liked this because he had a fringe which showed through at the front. Styling hair to cover patches could become more difficult if the hair loss became more extensive. Kayla and Imogen both had a hairdresser in the family who put extensions in their hair when it began to fall out more. Kayla’s aunt stuck extensions directly onto the scalp, while Imogen’s mum sewed human hair onto a bandana so it looked like her real hair. A few people wore partial wigs. Rochelle wore a front fringe wig when she first started losing her hair and when her hair started to grow back she wore a U-part wig with some of her natural hair showing. Arti wore a partial wig at first so that she could mix it with her own hair which she felt more comfortable with.Most people didn’t wear a full wig until they had lost all or most of their hair. Although a few people lost all of their hair very quickly, for many it was a slow process and so they had already been living with alopecia for some time before trying out wigs. Getting a wig for the first time could be daunting or feel strange. As Arti explained, it can feel “a bit odd wearing hair that’s not yours on your head”. Meghan doesn’t wear a wig currently and finds the thought of it in the future scary. This wasn’t always the case though and some people were less concerned about having or wearing wigs. Rochelle felt there was less stigma surrounding hair extensions and wigs amongst people of Afro-Caribbean descent and she found wearing a wig quite “natural really”.
Comfort and wearing wigs, scarves or hats
Wearing a wig, scarf or hat could mean not having to worry about other people noticing patches or baldness as much, which some found “liberating”. Emily says wigs let people with alopecia “just carry on with their lives”. For some who had become very self-conscious about their alopecia, it could help get their confidence back. Kayla thinks wigs have helped her “come out of my shell a bit more and I can pretty much do anything”. She says “when I have a good wig, I feel on top of the world”. A few people experienced others touching their wigs, scarves and hats or asking questions about them, but Annie Y said people don’t seem to notice her wig. Some people with alopecia on their scalps said they were often cold or could feel wind and rain on their heads when they went outside. When it was sunny, their head could become sunburnt. Wigs, hats and scarves helped people to be more physically comfortable.
Your mum mentioned a moment ago that you don’t like wearing hats very much?
I don’t mind them. I just don’t want to wear them sometimes.
Yeah, what times are those that you’d rather not wear them?
When it’s really warm.
Like, in the summer?
Yeah.
Yeah, yeah. What about in the winter?
Yeah, I wear them then.
And do you ever find that your head gets quite cold sometimes?
No.
Is there mostly hats that you prefer to wear rather than things like bandanas or…?
Yeah.
Do you know why that is, why you prefer hats over other things?
I just think they look more better.
Many people owned several wigs, scarves and hats which they changed between. Some said it could be ‘fun’ changing how they looked quite quickly and easily. Emilie enjoyed meeting a woman once who told her about different ways to style head scarves. Some people only wore their wig when going out to public places and would wear a hat or scarf when seeing friends. Grace wears a cotton head scarf at the gym, which is more breathable.
I had like every colour hair. I mean my hair was like how I express myself. But I guess that’s the same with like any teenage girl really. So I think that was what I found difficult because I’d gone from like blue to pink to red to purple to everything and then no hair. Like what do I do? How do I express myself now? But then I thought well I could express myself through having no hair, like that works too. I mean fewer people have no hair probably than have blue hair and pink hair. And I think I’d kind of just about grown out of the phase of dying my hair silly colours when I started losing my hair, and I was like okay, well it’s time to kind of stop that and grow up and just like be natural. And if natural is me not having hair then you know that’s, that’s me. That’s natural. And that’s probably going to shock people more than me having blue hair. If that’s what I wanna do then that’s what I wanna do. You know? And also just having wigs as well, I have stupid coloured wigs for when I wanna go out, I have like a lovely blue wig that’s like all mermaidy. And it’s just, it’s nice having that option instead of having to like bleach your hair and then put a colour on and then leave it on for 24 hours and then take it off. It’s, yeah it’s, it’s nice to kind of be able to, I find it easier to express myself which seems weird because it’s something that’s kind of taken my agency with how I look away from me. But it’s so much easier ‘cos like it takes me like 30 seconds to just put a wig on and I’ve just changed how I look. So yeah it’s, I, it’s quite liberating, it’s quite nice.
While wigs could be comfortable to wear, most people did not keep them on for long periods and people often removed their wigs when they got home. Some found wigs were itchy, tight or too warm on their heads. A few people said their wigs were comfortable enough to sleep in. Annie Y lives in a shared house with friends and sleeps in her wig most of the time as her friends don’t realise she has alopecia. She prefers this as it means she doesn’t have to talk about it. Kayla said she only discovered at an alopecia meeting that most people take off their wigs to sleep. The wig adhesive she uses now irritates her scalp so she has to let the skin breathe for a while and sometimes applies a lotion to help the skin heal if it’s become weepy.
The days that you do put wigs on, is it time consuming to do?
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.
Types of wig and hair pieces
As well as being different colours and cuts, people spoke about various types of wigs available. Wigs could be made from different materials, have a different top/cap onto which the hair is attached and cover all or part of the head. Different types have benefits and disadvantages. Some of the types of wigs people spoke about were:
So I’ve only used synthetics, so far. But I’m looking at the possibility of buying a real hair, a real hair one. And just from sort of trying one on at my hairdressers. She’s got a special wig clinic effectively where she sells and buys them in. But just sort of trying on a real hair wig in comparison to a synthetic wig. It’s amazing what the difference was like. So with its, for example, with synthetic wigs they’re a lot heavier and they’re a lot hotter and, than the real hair ones and also with the real hair ones, the fibres don’t let the hairs, they don’t, they don’t tangle as easily, so they just sort of, if you swished your hair it will swish instead of with this it kind of just stays and just moves a little bit [laughs]. So it all stays sort of together.
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.
Wigs usually only last for a limited time (sometimes only a few months) depending on the quality, length of the hair, material, how often it is worn and how it is maintained. It could take time to get comfortable with a new wig.
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.
Choosing the ‘right’ wig
With so many different types of wig available, buying a wig for the first time could be overwhelming. Arti says it’s “a very confusing new world”. People talked about finding a wig that was the right colour and shape for them as well as quality and cost. Some people preferred natural colour wigs but liked that they had different styles and lengths. The variety of wigs meant people could chose wigs to make them look more “professional”, “fun” or even “comical” for special events like fancy dress parties or plays. Most people enjoyed trying out different types of wig and had a few that they could choose from at any one time.
Well the company I get my hair system from is basically like a hair salon. You go in and you get like measured, your head measured and you’re given sample of about 40 different hair colours that you can choose straightaway, or you can go home and send, oh gosh I’m trying to think what his name is, gosh it will come to me. So you send the owner the photo of like the hair style or you can send two individual photos of the hair style you like and the colour, so I did that for this one. Then obviously I wanted the thickest hair because I really like big hair and I think that’s because when, well before my hair first fell out I had blonde brown hair, well light brown blondey hair and it was really thick. So having had that taken away from me [sigh] that’s obviously made me have a love for like thick hair. Like I don’t know, I feel more confident and I feel more [sigh] at ease with a lot of hair you know. So currently I have the longest hair system you can get without all of it, all of the hair easily falling out. And the thickest so I kind of like this though, it suits me more than my other hair system. I will show you my other hair system actually. And I look a lot more older.
There are a variety of places to get wigs from: online, shops, charities, specialist salons and NHS prosthetics departments. Some people were provided with wigs free on the NHS with a prescription from their dermatologist, although a few were not aware of this being an option. The prices and types of service varied a lot.
So if people decide they definitely would like a wig, then they are available on the NHS. There's a limit to two wigs per year. And you don't get the full cost of the wig. Sometimes the patient has to pay a proportion of the cost. And what happens is, they have to be prescribed from hospital, the GP can't prescribe them. So the hospital doctor, dermatologist, will fill in what's called an Appliance Form. They give that to the patient or the parent and there's a limited number of centres, places, that provide wigs, that work with that particular hospital. So they'll advise on where to go to. They go along there, choose a wig and then the supplier will send the invoice to the hospital, so the hospital pays. The other limitation is that only synthetic hair wigs are available on the NHS. You can't get natural hair wigs on the NHS. They're quite expensive. And you do need to pay for those. I think you can get a proportion of the cost back from the NHS, but certainly not the full cost. But having said that, acrylic wigs are very, very effective. They're very, very convincing. And the only problem, particular problem I've heard is that if they get too hot. So if someone's, you know, gets too close to the stove when they're cooking [laughs] you can sometimes get a kind of frazzling effect with the acrylic which you wouldn't get with a natural hair wig. So obviously you have to be careful with it. But wigs, the acrylic wigs, are very, very good. And if it's been well fitted-, not many people can fit children but, you know, there are suppliers who can do that, they can be very effective and make a huge difference to people's lives.
It was really hard, because it’s like you want to invest in something, but you have no idea about it. So, you just turn up to a shop and it’s like, when you’re going to buy something and you have no information on it and it’s really hard to kind of understand, there’s all these different things and different prices and you don’t know if that’s good or not compared to what it is. And like, when I first got the wigs, I didn’t know about different types of wigs; so when they were telling me it was like a monofilament top and it means like you can see like, it looks like it’s coming from the scalp, it looks like you’ve got skin underneath. And that was amazing to me. And like, I thought that’s really cool. And then, a couple of years later I found out about lace fronts, which looks like it’s coming from your scalp even more at the front, so it’s even more natural and so it’s like-, I’ve noticed, I’ve kind of gathered information over the years, so from when I first got my wigs and also paying like, the biggest thing like I regret is that I didn’t have information on being able to get free wigs. So, they didn’t tell me and when we did ask if I could get wigs on the NHS, they said ‘no’ and we don’t really know why. But when I turned 18, as soon as I turned 18 they said I could get wigs, but then I had to pay for a prescription and it was £65 per prescription. So it, yeah, that was really frustrating, cos then I’d been paying hundreds of pounds for these wigs when I could have been getting them free. And that was quite annoying [laughs]. But over the years I’ve kind of picked up all different wigs. So, I think I’ve got about 20 at the moment.
Oh wow.
Yeah. I like to change my look. So, I change it all the time. Yeah.
Could you tell me a bit about the variety of wigs that you’ve got?
Yeah, I’ve got everything from kind of, standard like really nice like brown and blonde. I’ve got a brown and a blonde human hair wig. And then, I’ve also got a pink, purple and blue wig, just for fun. And I’ve got different types, so I’ve got lace front. I’ve got a suction wig, which is really cool. It, but I need to be completely bald for that. So when I was, like shaving my head down completely smooth, I could wear the suction wig and it’s like silicone, so it’ll just stick to your head. And then, like other times I’ve got wigs that, when my hair grew back, I got a wig with like clips in it so I could secure my hair down a bit. So, yeah, it’s just, I’ve got all different – it’s quite fun.
Getting a good shop or online supplier could take time, which Kayla described as a “rocky road”. A few people described having a consultation where a specialist found a wig to suit them or let them choose a colour and texture which they then styled, as a hairdresser would, according to their preferences. Some preferred to shop online so they could try wigs on at home without anyone seeing and avoid having to go into a wig shop. Many said though that visiting a wig shop, at least initially, could be helpful.
I'm really lucky cos my parents can afford to pay for real hair wigs which is like a bit of a luxury cos wigs on the NHS are like synthetic and really horrible and like not nice to wear. But we found this guy who's like ab-, it's absolutely amazing. He's just a hairdresser but he gets in these, a wig like this and it'll just be like all long hair, like not cut, and I go and I just tell him how I want it cut. So it just like comes like this, all like, it's all like real hair. And then so I can, it's like I can pick whatever I want it to look like, and obviously, as you can tell, I just kind of generally try and get hair that looks like other people's hair, like bog standard sort. You don’t want to like-, if you're trying to like blend in you don’t really want to have like a crazy hairstyle. But yeah, it's really nice. They last for like between six months and a year and I, yeah, it's just really like manageable. You like just wash it completely normally and like hair-dry it and use straighteners, and it feels exactly like normal hair and, especially having the hair cut, I think like if you buy wigs from shops or like on the NHS they're already cut into styles and they look a bit like wigs, if that makes sense. Whereas, cos I just get it cut like a normal person has a haircut it, again I think it just makes it less obvious. Which is like a massive luxury that I get to do that, cos it's not like cheap.
Have you, like prior to this did you look into like the NHS wig schemes?
Yeah I think my mum always tells the story where, when I was younger, maybe when I got diagnosed, no, maybe when I was like a little older, I had this like wig from the NHS and then I just like went to school in it, and then like brought it home in a plastic bag at the end of the day cos they're just like really horrible and itchy and like really uncomfortable. And then I think, I think I just wore bandanas all the way through. I think I just got a bit curious about it, and then we, we sort of went to this place in London that, that is kind of similar to the one I have now but just like outrageously expensive. But we didn’t know cos we didn’t-, there's not very much of like, you're just Googling, like it's like hard to know like where to go, what to do. And then we realised that you didn’t have to pay that much money for them, like that was a thousands of pounds. And then we found this guy and I've been going to him like literally ever since I got one wig there, and then I've only ever been to him.
I remember we went to the hairdressers, cos I've had the same hairdressers for years, and he was like what did what happened? We kind of wanted to show him and kind of show him what's going on and stuff. And we were talking about it, and then my dad was like, "Right, tomorrow" we went to Selfridges on Oxford Street, cos we knew that they had a hair clinic, and my dad was like, "Right…" It was kind of like a short term fix type of thing, so it was kind of like a pamper. So we kind of went to Selfridges and I got my first wig, and it's really lovely in there cos you have your own consultancy room, so you're not like bald in front of other people, because I think was because it was such a new thing for me as well, I was like, "I don’t really feel comfortable being in the main kind of salony bit."
So you get go into the consultancy room, and they match you with a colour wig, and then he was like…I think it was slightly too long or something because I was, my hair was quite short at the time cos I've never had it quite, very long, because it had always like fallen out, so I just kind of kept it quite mid-length. And they kind of cut it for me and stuff; and then I had that wig for a little while, and then I'd never been told that I'd be eligible for wigs on the NHS by my GPs, or by my consultant, or anyone. And through the Alopecia UK charity I was… I found out from another girl that I was eligible to go and get a wig on the NHS. So that was quite a long drawn out process cos it has to be applied for through the, what's it called… There's like loads of forms and stuff and then you kind of I got sent to this hair studio, and they were like, "Right, this is, these are the ones that you can have," and there wasn’t I think going from Selfridges to like this little hair studio, was probably quite a bit of a shock cos they were like, "We've got this colour, and we've got this colour, but it's not quite the colour that you want," and you're like, "What… give me whatever you’ve got really."
Oh I’ve been going to hair shops since I was maybe four, no, since probably all my life to get creams and greases and everything. What an experience in there, you just go and everyone’s cheerful because you know a lot of the women, they’re buying their wigs and weaves anyways or you’re buying your shampoos and your creams or just normal Vaseline or anything, they’re really big. I normally go to [name] hair shops and they’re really helpful in there. And they have everything that you want, everything that caters for all types, mainly Afro Caribbean hair but any, any types of hair they really cater for, they do anything from Vaseline to cocoa butter, to Groganics, they have all oils, lavender oil, coconut oil, any, almond oil, anything you want you can get there for hair. So yeh, it's a great experience going there.
Maintaining wigs
Wigs need to be maintained, such as washing and drying them. This depended on personal preference as well as how often they wore the wig. Some people washed their wigs quite frequently (once or twice a week) but others did it less (once every month or so). Special conditioners and shampoos were needed for synthetic wigs. Kayla also tried using argan oils to stop the hair from drying out and Krista found using fabric conditioner kept it “shiny and nice”. Laurel uses a special wire brush for her synthetic wigs and finds after a while the ends begin to split. Some people bought or made their own wig stands to dry theirs overnight after washing.
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].
So the synthetic hair wig you have to buy a synthetic shampoo and conditioner, or just shampoo if you want [laugh]. But yeah, so you just wash it in the sink with cold water. You’re not allowed hot water, hot water’s very bad for it [laugh]. So you just fill up the sink with water, some, yeah, a little bit of water. Put some shampoo on your hands and just rub it through. Soak the water through, soak the wig through the water and sort of rub it through for a bit. It’s really quick. It just takes like a minute or two and then just wash it, rinse it out and do the same with the conditioner. It’s really easy and then you sort of just, I was drying it up in like the shower. So just leave it there overnight and then just put it on the next day, comb it through and wear it the next day in turn. So I’d sort of wash it every two weeks which, I know some people wash it like every month but I was wearing it like almost every day so. It’s a lot less than normal hair. But yeah, between washes I also got a, I’m not sure exactly what it is, I think it’s a synthetic sort of hair spray thing. It’s just something to use like in between washes just to give it a bit more life almost, when it doesn’t really need a wash. So yeah, I was just using that in between washes and sort of freshen it up a bit. And yeah, other than that just combing it every day. I don’t actually have a wig stand. I was just like propping it up. And actually at uni, I have a sort of homemade wig stand that I made out of like a tissue box and plastic bags and a bottle [laughs]. So I was using that. Yeah. I’m not sure what else to say [laugh]. So that was sort of caring for it.
Avoiding getting wigs dirty, for example getting sand it in at the beach or wearing it to the gym where you sweat a lot, was important. Some people avoided wearing their wigs while swimming, on holidays or to festivals, where they would not be able to look after it properly. As well as looking after the hair on the wig, the foundation or base of the wig can get easily damaged and become uncomfortable. Some found over time the wig base became looser and could poke out at the back of their neck. People mentioned taking care while brushing the hair on the wig not to rip or damage the base of the wig.
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.
Many people mentioned backcombing their hair and using hairspray to keep it in place to cover up any areas of baldness, especially when they had quite small patches of hair loss. Michael also wore beanies (hats) at sixth form and liked this because he had a fringe which showed through at the front. Styling hair to cover patches could become more difficult if the hair loss became more extensive. Kayla and Imogen both had a hairdresser in the family who put extensions in their hair when it began to fall out more. Kayla’s aunt stuck extensions directly onto the scalp, while Imogen’s mum sewed human hair onto a bandana so it looked like her real hair. A few people wore partial wigs. Rochelle wore a front fringe wig when she first started losing her hair and when her hair started to grow back she wore a U-part wig with some of her natural hair showing. Arti wore a partial wig at first so that she could mix it with her own hair which she felt more comfortable with.Most people didn’t wear a full wig until they had lost all or most of their hair. Although a few people lost all of their hair very quickly, for many it was a slow process and so they had already been living with alopecia for some time before trying out wigs. Getting a wig for the first time could be daunting or feel strange. As Arti explained, it can feel “a bit odd wearing hair that’s not yours on your head”. Meghan doesn’t wear a wig currently and finds the thought of it in the future scary. This wasn’t always the case though and some people were less concerned about having or wearing wigs. Rochelle felt there was less stigma surrounding hair extensions and wigs amongst people of Afro-Caribbean descent and she found wearing a wig quite “natural really”.
Comfort and wearing wigs, scarves or hats
Wearing a wig, scarf or hat could mean not having to worry about other people noticing patches or baldness as much, which some found “liberating”. Emily says wigs let people with alopecia “just carry on with their lives”. For some who had become very self-conscious about their alopecia, it could help get their confidence back. Kayla thinks wigs have helped her “come out of my shell a bit more and I can pretty much do anything”. She says “when I have a good wig, I feel on top of the world”. A few people experienced others touching their wigs, scarves and hats or asking questions about them, but Annie Y said people don’t seem to notice her wig. Some people with alopecia on their scalps said they were often cold or could feel wind and rain on their heads when they went outside. When it was sunny, their head could become sunburnt. Wigs, hats and scarves helped people to be more physically comfortable.
Danny doesn’t like to wear hats when it’s hot. He prefers the look of a hat rather than a bandana.
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Danny doesn’t like to wear hats when it’s hot. He prefers the look of a hat rather than a bandana.
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I don’t mind them. I just don’t want to wear them sometimes.
Yeah, what times are those that you’d rather not wear them?
When it’s really warm.
Like, in the summer?
Yeah.
Yeah, yeah. What about in the winter?
Yeah, I wear them then.
And do you ever find that your head gets quite cold sometimes?
No.
Is there mostly hats that you prefer to wear rather than things like bandanas or…?
Yeah.
Do you know why that is, why you prefer hats over other things?
I just think they look more better.
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.
As well as being different colours and cuts, people spoke about various types of wigs available. Wigs could be made from different materials, have a different top/cap onto which the hair is attached and cover all or part of the head. Different types have benefits and disadvantages. Some of the types of wigs people spoke about were:
- Real/human hair – these were seen as being more flexible and could be styled, using heating tongues or hairdryers. Many people felt these wigs looked more natural but they tended to be more expensive.
- Synthetic hair – these are usually cheaper but often become dry, are not heat-resistant and can wear out quite quickly.
- Monofilament and lace front top – these types of wig cap allows the parting to be changed, making them easier to style than basic wig caps.
- Vacuum or suction cap – these tend to stay on the head better.
- Partial wigs and extensions – that cover just one part of the scalp such as the fringe, which can be clipped in and blended with existing hair.
Rosie compares synthetic and real hair wigs.
Rosie compares synthetic and real hair wigs.
Emma talks about styling her real hair wig.
Emma talks about styling her real hair wig.
Kayla describes the process of changing her wigs regularly.
Kayla describes the process of changing her wigs regularly.
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.
With so many different types of wig available, buying a wig for the first time could be overwhelming. Arti says it’s “a very confusing new world”. People talked about finding a wig that was the right colour and shape for them as well as quality and cost. Some people preferred natural colour wigs but liked that they had different styles and lengths. The variety of wigs meant people could chose wigs to make them look more “professional”, “fun” or even “comical” for special events like fancy dress parties or plays. Most people enjoyed trying out different types of wig and had a few that they could choose from at any one time.
Imogen prefers wigs that are thick looking because that is how her natural hair was.
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Imogen prefers wigs that are thick looking because that is how her natural hair was.
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Professor Moss explains the NHS allowance for wigs.
Professor Moss explains the NHS allowance for wigs.
Sex: Female
Hannah hadn’t known that she was eligible for free NHS wigs and had been buying her own wigs for a few years.
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Hannah hadn’t known that she was eligible for free NHS wigs and had been buying her own wigs for a few years.
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Oh wow.
Yeah. I like to change my look. So, I change it all the time. Yeah.
Could you tell me a bit about the variety of wigs that you’ve got?
Yeah, I’ve got everything from kind of, standard like really nice like brown and blonde. I’ve got a brown and a blonde human hair wig. And then, I’ve also got a pink, purple and blue wig, just for fun. And I’ve got different types, so I’ve got lace front. I’ve got a suction wig, which is really cool. It, but I need to be completely bald for that. So when I was, like shaving my head down completely smooth, I could wear the suction wig and it’s like silicone, so it’ll just stick to your head. And then, like other times I’ve got wigs that, when my hair grew back, I got a wig with like clips in it so I could secure my hair down a bit. So, yeah, it’s just, I’ve got all different – it’s quite fun.
Annie Y compares her experience of buying a real hair wig with the NHS wig she had in school.
Annie Y compares her experience of buying a real hair wig with the NHS wig she had in school.
Have you, like prior to this did you look into like the NHS wig schemes?
Yeah I think my mum always tells the story where, when I was younger, maybe when I got diagnosed, no, maybe when I was like a little older, I had this like wig from the NHS and then I just like went to school in it, and then like brought it home in a plastic bag at the end of the day cos they're just like really horrible and itchy and like really uncomfortable. And then I think, I think I just wore bandanas all the way through. I think I just got a bit curious about it, and then we, we sort of went to this place in London that, that is kind of similar to the one I have now but just like outrageously expensive. But we didn’t know cos we didn’t-, there's not very much of like, you're just Googling, like it's like hard to know like where to go, what to do. And then we realised that you didn’t have to pay that much money for them, like that was a thousands of pounds. And then we found this guy and I've been going to him like literally ever since I got one wig there, and then I've only ever been to him.
Visiting a shop to choose a wig was “like a pamper” session for Grace.
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Visiting a shop to choose a wig was “like a pamper” session for Grace.
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So you get go into the consultancy room, and they match you with a colour wig, and then he was like…I think it was slightly too long or something because I was, my hair was quite short at the time cos I've never had it quite, very long, because it had always like fallen out, so I just kind of kept it quite mid-length. And they kind of cut it for me and stuff; and then I had that wig for a little while, and then I'd never been told that I'd be eligible for wigs on the NHS by my GPs, or by my consultant, or anyone. And through the Alopecia UK charity I was… I found out from another girl that I was eligible to go and get a wig on the NHS. So that was quite a long drawn out process cos it has to be applied for through the, what's it called… There's like loads of forms and stuff and then you kind of I got sent to this hair studio, and they were like, "Right, this is, these are the ones that you can have," and there wasn’t I think going from Selfridges to like this little hair studio, was probably quite a bit of a shock cos they were like, "We've got this colour, and we've got this colour, but it's not quite the colour that you want," and you're like, "What… give me whatever you’ve got really."
Rochelle goes to hair shops that specialise in Afro-Caribbean hair where a lot of women buy their wigs.
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Rochelle goes to hair shops that specialise in Afro-Caribbean hair where a lot of women buy their wigs.
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Wigs need to be maintained, such as washing and drying them. This depended on personal preference as well as how often they wore the wig. Some people washed their wigs quite frequently (once or twice a week) but others did it less (once every month or so). Special conditioners and shampoos were needed for synthetic wigs. Kayla also tried using argan oils to stop the hair from drying out and Krista found using fabric conditioner kept it “shiny and nice”. Laurel uses a special wire brush for her synthetic wigs and finds after a while the ends begin to split. Some people bought or made their own wig stands to dry theirs overnight after washing.
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.
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.
Arti talks about washing and freshening up her synthetic wig.
Arti talks about washing and freshening up her synthetic wig.
Kayla has tried out different wigs to see which stays nicest for longest.
Kayla has tried out different wigs to see which stays nicest for longest.
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