Alopecia (young people)

Some people said that having alopecia had no impact on their sleep, but others mentioned ways it could affect them. The main examples talked about were:

• hair falling out on pillows and bedding

Some people noticed this symptom of alopecia and found it very upsetting. Waking up to hair “all over my pillow” meant Annie X was “constantly being reminded that it’s happening”. Others said they never saw much loose hair on their pillow or they only started to notice some because they were checking for it.

• routines with treatments and washing wigs

Routines, such as applying treatments or washing wigs, were often done in the evenings or before going to sleep. This includes putting on topical steroids for alopecia areata. Ben says he had to be careful when he used steroids creams on his scalp at night in case it rubbed on to the pillows and his face. Rochelle has some shop-bought natural remedies which she uses at night so that their smell fades before morning. Rochelle also likes to have satin pillowcases and headscarf as she’s heard this is better for her skin and hair than cotton. Many people said that it was best to wash their wig in the evening and let it dry overnight. Emily had a special wig stand to put hers on to help it dry in shape.

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.

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Age at interview: 24

Sex: Female

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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].

• wearing wigs or hats at night-time

Some people wore their wigs to sleep in, others didn’t or rarely wore theirs overnight. A key reason for wearing wigs overnight was the worry that others, like flatmates, would be shocked to see them without it. However, lots of people said it could be uncomfortable and wear out the wig more quickly. Arti thinks her wig would become knotted and difficult to de-tangle if she slept in it. Annie Y finds that the wig gets matted if she sleeps in it, which means she has to use conditioner more, and she says she sleeps better without the friction of the wig. Kayla says sleeping in her wigs is “still worth it” for her as she prefers to wake up with it on. Beth liked having a room of her own which she could lock at university as “then no one came in, so it was okay to take it off, in your own space”. For those with scalp alopecia who didn’t wear wigs or didn’t wear them at night, their heads could get cold and some people preferred to wear a hat. Imogen says a hat “brings pressure off my head” when the skin on her scalp feels “very delicate”.

When she first lost her hair, Hannah always wore hats at night.

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When she first lost her hair, Hannah always wore hats at night.

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Age at interview: 21

Sex: Female

Age at diagnosis: 16

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It was weird to get used to the breeze as well. So I was kinda cold all the time and so that was weird and I’d sleep with my hat on and like, so that affected-; that was different cos I never used to even wear a hat let alone sleep in one, so, yeah. Now hat’s my best friend.

What was the reasoning at the time that you would sleep in a hat?

I’m not too sure. I think it was a kind of comfort thing, cos you feel more comfortable when you’ve got some kind of y’know something around you, and I think it made me feel warmer. Also I lost my hair when it was snowing. The first time I lost my hair and it was snowing, which wasn’t the best time to lose your hair [laughs], because there was quite a breeze. But yeah, so I just got into wearing hats. And I think it was a mix of covering up and then also it was my kind of comfort blanket, it was my little comfort blanket. So I just wouldn’t take it off.

Annie Y’s flatmates don’t know she has alopecia. Although she says it wouldn’t be a big deal if they knew, it does mean that she sleeps in her wig more often.

Annie Y’s flatmates don’t know she has alopecia. Although she says it wouldn’t be a big deal if they knew, it does mean that she sleeps in her wig more often.

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Age at interview: 23

Sex: Female

Age at diagnosis: 3

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Yeah I guess the only thing that is like an issue is that I don’t really like sleeping in it, but then I will-, like in the house I'm in at the moment – I've lived there since January with one of my like really, really good friends – and I don’t-, I can't like lock my door. So, when I was at uni I used to just lock my door and then like not sleep in my wig. But I find that more and more I've kind of like slept in it or things like that. So, yeah, apart from that though I think that’s it. Like, cos you can't like, if I wash it and stuff and it's like wet, you can't tell then either so that-, it is the only, like it's just the sleeping thing that’s like might be-. But then again if they did realise I'd just tell them. Like that’s the other thing, it's not like if they realised there would be some big drama. I'd just sort of say, and then they'd probably be like, "Oh OK." I don’t know, it just doesn’t, it doesn’t feel like a big sort of scary secret; it's just I don’t need to tell them about it cos I don’t really need to talk about it.

• worry and stress affecting sleep quality

The emotional impact of alopecia could make it hard to sleep. Emilie finds she sometimes has upsetting dreams about alopecia. Krista says she would often cry herself to sleep. Michael says night-time is when he does “the majority of thinking” about alopecia. He also found that oral steroids had a side effect of disrupting his sleep and energy. A few people said that it was an emotional struggle to get up and out of bed in the morning when they felt down about alopecia. Emma remembers when she lost all her hair for the first time and after “waking up in the morning, every mirror I saw I was just bursting out into tears”.

Michael had help from his mum with deciding about steroid treatments. He tried steroid tablets but thinks that they affected his mood and made it more difficult to sleep.

Michael had help from his mum with deciding about steroid treatments. He tried steroid tablets but thinks that they affected his mood and made it more difficult to sleep.

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Age at interview: 19

Sex: Male

Age at diagnosis: 13

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But then in terms of the different steroids and steroid lotions, she just helped me like decide that, not to go with steroids again because of the impact it had on my personality last time. In terms of making me hyper or moody. Which it seemed to do. So I've ruled that out as well. So I'm just waiting for another treatment now, and then I'll make a decision then.

Was that impact on sort of personality and mood something that your doctors had mentioned?

Yeah, they mentioned the possible, possibility of it. But I hadn't noticed it myself. But my friends and my mum noticed it, so. It was-, I didn't carry on taking them for very long.

In what sort of ways did it have an impact on your personality?

Mainly in terms of making me quite hyper, I think. Like quite excitable, like at random points in the, in the day. And at night time I used to find it, find it hard getting to sleep. Which I still do, but that might be a separate issue.

What kind of impact would that have the next day, if you'd sort of struggled to get to sleep in the evenings?

I used to struggle getting to sleep partially, well maybe due to the medicines, but also in terms of thinking at night time when I was in bed. That was when I did most thinking. And I used to get very upset in bed. And then I was, I'd be really tired the next morning. Or ill. Either one. So on top of not wanting to go to school anyway. That was a struggle, as well.

Would that be sort of like a, feeling ill because you'd been sleep deprived, kind of?

Yeah, I think so, feeling that way, but-. Yeah. I think not like, staying up late thinking caused me to feel ill in the morning, and then I didn't want to go to school anyway, because I didn't want to be seen, almost. So it was just difficult. Especially when I was around 14, 15, so.

• getting up earlier in the morning

Some people found their treatment or styling routine with alopecia meant they had to get up earlier. Kayla says she saves about 30 minutes in the morning now her eyebrows are tattooed on and she doesn’t have to use make-up to draw them. Before Ben shaved his head, he used a tinted spray to help cover patches and had to remember to take this when staying over at other people’s houses. Ben says he would wake up early to “fix my hair”, whereas now his morning routine is a lot quicker. Beth’s eyelashes fell out while she was at university. Her eyelids were sometimes sore when she woke up and it would take a while for the swelling to go down.

Staying over at a friend or partner’s house could involve several of these issues, such as worrying about whether to wear a wig at night and having to get up early to do treatments or re-style their hair. Emily finds wigs uncomfortable and sometimes drops her's home during a night out if she’s staying over at her boyfriend’s and doesn’t want to carry it back the next day. Kayla says it was difficult camping with friends when she was younger and styled her hair to cover patches, as they didn’t understand why she was concerned with her hair. When Beth stays over at people’s houses after parties, she sometimes worries about her wig coming off during the night and “what if it’s down at the bottom by my feet when I wake up?” You can read more on the impact of alopecia on young people’s social lives and activities here.