Many young people had advice based on their own experiences to give to others with alopecia. The main messages were:
- it’s okay to be upset about alopecia, but try not to let it rule your life
This was a key message given by lots of the young people we talked to. Grace says alopecia is about more than “just hair” and that it can have lots of impacts on emotions and mental health. Many people felt strongly that you shouldn’t stop living your life or hide away because of alopecia. Krista feels she missed out on times with her daughter because she was so upset. Beth says, “You do go through peaks and troughs with it” and there may be points when it’s harder to cope, but “try not to let it bother you that much, even though it’s a lot easier said than done”. Many people talked about acceptance being easier with time. Having alopecia used to make Kayla feel “like there’s something wrong with you”, but she feels it’s less of a worry now she’s older. Laurel says it’s “nothing to be embarrassed about” and Ben has the motto of “you define alopecia, don’t let it define you”.
Michael felt like alopecia was the “end of the world” when he was first diagnosed, but now knows it doesn’t have to be.
Michael felt like alopecia was the “end of the world” when he was first diagnosed, but now knows it doesn’t have to be.
Age at interview: 19
Sex: Male
Age at diagnosis: 13
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I'd say alopecia isn't the end of the world, at all. That's what I initially thought it was. Like I thought my life was going to be ruined from the start, as soon as I got it. But it wasn't. I've done many things in the past few years, and met many different people, who've liked me for who I am. And I've done my GCSEs, done my A levels, and I'm now at university, and I'm getting on with my life as I would if I didn't have alopecia. It's not stopped me doing anything, really. I think you've just got to remain optimistic. And there may not be a solution right now, but in years to come there may be. And if there's not, it's not that important, like. There are more important things in life. And it does have a psychological impact on you, but it doesn't affect your health in other ways. So if you can try and maintain confidence and positivity, then you should be okay.
Annie X says you shouldn’t ‘wish away’ your time in the hope alopecia goes away. She thinks doctors need to be aware of this when they talk about regrowth.
Annie X says you shouldn’t ‘wish away’ your time in the hope alopecia goes away. She thinks doctors need to be aware of this when they talk about regrowth.
Age at interview: 15
Sex: Female
Age at diagnosis: 11
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All I remember is that it was a man and he, both my parents were there, and he said, “It will probably take-”, he said, “It’s alopecia areata which means that patch will probably take a year to sort out”, but what he didn't know was that it was going to be more than one patch and carry on. So, yeah, he kind of gave me false hope, because I remember I was like counting down the months until the year was over and then it just carried on after and after and after a while I stopped counting. Which is another thing I want to say, because I put a timeframe on it – and that was really-, that was really frustrating because I was kind of wishing the days away, but you kind of have to, what I’ve learnt now is that you can’t ever, you don’t ever know when it’s going to stop or start again. So you have to just let it, let it happen and just be patient with it and sort of don’t let it stop you, because for a while I was like, ‘I’m not going to do this, I’m not going to go out, I’m not going to go to parties, I’m not going to buy these clothes, I’m not going to wear these clothes until my hair is back’ and you can’t do that because if that happens for the rest of your life, then you are always waiting to live.
- get support from the people around you
Some people said they felt very alone when they first had alopecia and that talking to others around them had helped. Family, friends and partners were often mentioned, but work colleagues and teachers or university staff could also offer support. Arti wishes she had told people about having alopecia sooner as she thinks she would have had more support from the start. Some people said to be aware that other people may not immediately understand about alopecia or may say the ‘wrong’ things, even if they’re trying to help. Becky thinks it might be a good idea to talk to people around you to explain that “there’s certain things that they can’t say to you” and let them know what kind of support you want.
Annie Y thinks other people are often more understanding about alopecia than you might expect.
Annie Y thinks other people are often more understanding about alopecia than you might expect.
Age at interview: 23
Sex: Female
Age at diagnosis: 3
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Just that it's really not that bad, and that people are really understanding, and I just think that sometimes I, when you might worry about what people would think or how people are going to be, you have to think about how you would be about it, and you know that you'd only be nice; and I've only ever had really good experiences with people. And people are so understanding, and they don’t want to pry, and like that’s so fine for you to tell them but also, also it's also completely fine for you to not tell them; that’s how I've, the experiences I've had. And that people aren't that interested – either they’ve got, you know, their own things to think about. So, as long as you're like come to terms with it yourself, I think that other people will be just fine. People are so much more accepting than they get credit for; that’s my experience anyway. And then also just like if you need to talk about it, that people are so happy to talk to you. And if you don’t want to talk about it that’s also fine, it doesn’t mean, you know, that you're hiding anything; it just means that you don’t need to talk about it cos you're-, that’s how I feel; I don’t talk about it loads but that’s just because I don’t view it as a really big problem, because it isn't a really big problem in my life. But then equally, obviously if it is that, there's loads of people that you can talk to about it.
Kayla says good friends and partners will be supportive about alopecia, but it can be difficult to know who to talk to.
Kayla says good friends and partners will be supportive about alopecia, but it can be difficult to know who to talk to.
Age at interview: 20
Sex: Female
Age at diagnosis: 4
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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.
- consider talking to other people who also have alopecia
Many people found that online and face-to-face groups for alopecia were an important source of emotional and practical support. Support groups played a big role in helping the people we talked to feel less alone with alopecia. Some of the young people preferred speaking to others their own age, but it could also be helpful hearing the experiences of someone different to them. People said there was also a lot of helpful information that can be shared between those with alopecia. Many had learnt about types of wigs and how to take care of them through online groups. Grace first heard about entitlements on NHS to reduce the cost of wigs through the Alopecia UK charity.
Ben found it helpful talking to others with alopecia online. It helped him think in positive ways about his experiences.
Ben found it helpful talking to others with alopecia online. It helped him think in positive ways about his experiences.
Age at interview: 18
Sex: Male
Age at diagnosis: 14
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There’s this one lady I talked to said about like she said “Life cha-,” it’s not life-changing, she said, “Amazing” or something. I was interested because, you know, not many people would say that. So I messaged her and she- she sent me this message that was- she wouldn’t-, she, if she had a choice she wouldn’t-, she wouldn’t go back. She would stay with it. And she feels it’s made the- made her the person she is. I feel like there’s different stages almost. At first it’s really painful and then you kind of, you know, you kinda get used to it and then but you still wish for it and eventually I think you come out the other side and you realise-. I don’t think I’m quite at- right at the end where she is but I think eventually you kinda realise once you’ve got rid of everything else, it’s really the person inside that counts. It sounds really cliché but I made an analogy to say like if you look a- look at a wall and that wall was a person, if you sand the paint off you can really see like what the wall’s made of, what material of the wall is and I think if you think- see the paint as, you know, the paint is the hair and alopecia is the sandpaper. It’s a bit cheesy but you know, it’s kinda true. It’s kinda true if you think about it. You really get to know the real person after that.
Initially, Emma was nervous about going to her local alopecia support group but it was really useful and now she recommends it to others.
Initially, Emma was nervous about going to her local alopecia support group but it was really useful and now she recommends it to others.
Age at interview: 23
Sex: Female
Age at diagnosis: 14
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The alopecia support group was really useful actually. I was really nervous about going cos I just think like, is it gonna be full of old people? Cos I just thought, if it’s gonna be full of old people, I just think I’d rather meet someone that was my age. And there w-, there was about three girls that were all my age. I was the baldest. Which was great. But they were all just, they’d all had it around the same time and, you know, just, you could just relate to them. You could be like, “Oh, how bald are you?” And it was just like, you know. And so that was really useful. And, you know, they’d all just share experiences and, you know, they’d all bring, they’d all bring their new wigs in. And it was just nice to just find people that just understood you. Cos I think like I’ve always thought, you know, I’m not, I’m not poorly. And like when you say, when you say to people, you know, “I’ve got alopecia” you’re not poorly at all. You just, but you have got an autoimmune problem. Which isn’t as bad as some autoimmune problems, but it is still bad in terms of like it’s your hair, like a big focal point when you look at someone. When you don’t have it, that sort of takes your identity away. It just, it just has a lot of, you know, emotional downfalls to it. And, you know, they all got that. Which I think sometimes when you talk to like your friends that haven’t, you know, when I speak to all my friends that haven’t got a problem wrong with them, you think, 'well, why have I got this?' And, you know, like you, they can’t relate. You know, they listen. Which is great and I, you know, never ask anything more from them. But it’s nice to sit down with people that are like, "Oh, yeah, I know what you mean". And, and like, you know, say, cos I, I thought I’d be the only one that has a cold head. When I’m in bed my head is freezing. And everyone was like, “Oh, yeah, I get that as well.” Which is nice just to hear that you, you are. Cos you just, you feel quite isolated. Because I’d never ever met someone with alopecia until I went to that group. I think cos it’s not, I mean, people might wear wigs and you don’t know. But like it’s just people don’t, you don’t often see people with it. So it was really useful to go to that, I’m gonna go again. So I’d say to anybody to like try and find your alopecia group and go to it. Cos it was really useful.
- try different treatments if you want to, but don’t feel like you must
The decision about whether to try treatments for alopecia areata, which ones and how long for was a personal choice. Some people hadn’t tried any treatments or hadn’t done so for a long time. Others thought medical treatments, alternative therapies and shop bought products were worth giving a go and some had good results from using these. Lots of people talked about there being limits to the treatments they would consider. Meghan stopped getting steroid injections when she no longer felt comfortable with the treatment. Emma thinks something like minoxidil might be worth trying for a small patch of alopecia areata, but to be true to your own limits on what you are willing to try. Kayla thinks it was best for her to learn “how to live with it” rather than focus only on trying to stop or reverse the hair loss.
Emma says losing hair and the uncertainty of alopecia is hard for young people recently diagnosed. She says they might be considering treatments and encourages them to take things day-by-day.
Emma says losing hair and the uncertainty of alopecia is hard for young people recently diagnosed. She says they might be considering treatments and encourages them to take things day-by-day.
Age at interview: 23
Sex: Female
Age at diagnosis: 14
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I think like people who’ve just been diagnosed with alopecia, I think do, don’t, try not to see like the very negative side of things. Like, you know, like I think, yeah, look for treatment options. I think give them a go if you want to. But I think, I think the most important thing is just accepting, not that you’re gonna be bald for ever at all, at all, because that might not happen. You don’t know what’s gonna happen with alopecia because there’s no, there’s no definite prognosis on what’s gonna happen. But I think, you know, just accepting who you are at the time and what happens day to day. You know, and s-, like not to monitor how much hair you’re losing or how much, how hair you’re, you’re regrowing. Just let it happen. Which is awful. I also think that if, what I found really hard, as I've said, is like the hair falling out. I found it so hard. Because you’d wake up in the morning, you’d have hair on your pillow. And, you know, you brush your hair and more comes out than should do. And I, I just always thought ‘stop’. Cos at one point I had like half my hair and I just thought ‘what’s the point having half my hair?’ And I just cut it off. And I just felt a lot better. Cos it just felt like losing my hair was so much harder than being bald. I think like, as I say, I got, I d-, I did get really upset by it all. And I think, and it’s natural I think. You shouldn’t feel that you shouldn’t be getting upset.
- be confident about who you are and how you look
Many people talked about alopecia being only one part of them and their appearance. Elizabeth talked about all the other things that make her who she is and not just someone with alopecia: “I am a singer, I am a musician, I hope I’m a nice person, I’m a caring person, I’m compassionate”. Annie X thought alopecia could be a “barrier between who you are and who you think you are and who other people think you are”. Annie Y says, “As long as you just find something that you're comfortable in, whether it's a wig or a bandana or even if it's none of those things, just do whatever you want and then it will be fine”. Ben found shaving his head was hard to think about at first but made him feel better afterwards. Imogen feels her experiences of alopecia have helped her become “this positive person that I am” and that she’s found a way to “embrace” it in her life.
Emilie encourages young people with alopecia to have fun with their appearance and expressing their identity.
Emilie encourages young people with alopecia to have fun with their appearance and expressing their identity.
Age at interview: 18
Sex: Female
Age at diagnosis: 4
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Wear a wig if you are more comfortable in it but never be ashamed of what you actually look like because it is your body, what your opinion-, your opinion is the only one that matters nobody else’s does, okay. I went through many years of wearing, you know, different wigs and mostly hats and caps, find things that you love to do and see a way of funnelling that fear and that sadness into the thing that you love doing. It could be maths, it could be whatever, but for me, you know, performing and art and just doing things like that really helped me break out of that, you know, that zone, that fear. Just-, honestly as cheesy as it sounds be yourself, just be yourself and people will like you, you will have friends, you will find someone, everyone finds-, you know, anyone can find someone, you know, it’s-, I found someone. Didn’t think I would, I found someone. Just be yourself, really do. Cos the more you try to be like someone else, the more people aren’t gonna like you because they-they won’t know you. People like you if they actually know you and if you, you know, block them out, if you build a barrier and pretend to be someone else, you know, this person’s not really gonna know you, they’re just gonna know a façade that you’ve put on. I’d say at the beginning if you have alopecia now, if you’ve just started getting it – then wear wigs if you’re more comfortable with it, if you spent most of your life having hair, I feel like it’s easy for me to say because I spent so little of my time having hair, I was only, you know, four but say like if you’re in your 20s now or something and started losing hair and if you are more comfortable. But just remember, there are other styles other than hair, there are so many other styles, you can wear scarfs, anything you like, you can look so funky and so fresh, you know, doing your makeup, even glasses – I love wearing glasses, I have three pairs of glasses, they all make my face shape look different and it adds to my look you know. My advice would be: be yourself, dress the way you wanna dress, you know, wear what you wanna wear but just remember be yourself, don’t try becoming someone else. You know, if you’re gonna wear a wig to try and look like someone else or try and be someone else – don’t do it, don’t do it to yourself because you’re only gonna cause more harm.
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