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Alopecia (young people)

Sources of information and support about alopecia

Many young people we talked to felt very alone when they were first diagnosed with alopecia. Some said their doctors gave them little information or emotional support and they looked for information themselves in other ways. The main source of information and support was other people with alopecia. Other sources of information and support, both practical and emotional, include:
 

Emily thinks talking to others with alopecia, as well as friends and family, is an important source of support.

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Age at interview: 20
Sex: Female
Age at diagnosis: 19
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I think definitely seek out support. I mean it’s good to have the support of your family, if you have that and your friends if you have that, but to have strangers who are also going through the same thing is kind of comforting to know that there are people out there who have the same thing as you and are going through the same things as you and having like bad days like you and good days like you. And also there’s like a whole host of information on support group websites and things about wigs and hats and events that you can go to. So I think the main thing would be just to seek external support instead of just kind of suffering alone. And also I mean families and friends are great, but if they’re not going through it they’re not going to know how you’re feeling. And I think it’s really important to have those kind of experiences available that you can like talk to people and hear their stories.
Types of information about alopecia

Many said hearing other people’s experiences with alopecia was a key source of information and support for them. Emily also read academic research papers about alopecia and treatments. Danny’s mum looked online for information but he has never looked himself. Emilie has looked up a few things online, such as treatments or other people’s stories, but says she’s “not one for sitting hours on end looking at my condition”. A few people said they had searched for stories of famous people who had alopecia, which helped them to feel better about themselves and the public profile of alopecia.

People had used the internet to find information about:
 

Arti used the Alopecia UK website and posted on their forum to get advice about wigs.

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Age at interview: 22
Sex: Female
Age at diagnosis: 22
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So obviously I found the website itself quite quickly because it’s a huge source of resource. So yeah, so I found the website and I was using it quite a bit in the early stages to find out information because they do have quite a lot of information there, like for wigs and stuff. They have a lot of information about wigs and help about that. And yeah, so I’d been exploring the website for quite a bit, looking for information on it. And in terms of posting on there I posted on there because I was still very confused about the whole wig world and I just felt like I needed some like actual experienced help with it all, cos there’s a lot of different wigs [laugh] and it’s all a very confusing new world. And yeah, like I didn’t know much about the caps which I was quite confused about. It’s like there’s wefted caps and monofilament caps and there’s probably some other caps that I don’t know about. They’re the only two that I remember at the moment [laugh] but yeah, learning about all that, I didn’t really understand what the difference was or whether one was better or one was worse and same with sort of whether a partial hair wig would be better than like a-. Well, I didn’t actually know about partial hair wigs at that point [laugh]. But I didn’t know what to get and I was reluctant to get a wig anyway. So I felt like getting some information and help from people who know would be a really great thing so that’s what I did. And it was really helpful and great, so that was really good.
Reading about and talking to others with alopecia

People shared stories online (using forums, discussion groups, social media, blogs and charity websites) and in person (including groups and days out run by the Alopecia UK charity). Some people read other people’s stories on forums without posting themselves. Rochelle and Becky both find it helpful to read other people’s blogs to see whether others felt the same way as them. Becky says reading these blogs help her to worry less.
 

Ben joined an alopecia areata Facebook group. He says it gives him “a sense of community” and a support network.

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Age at interview: 18
Sex: Male
Age at diagnosis: 14
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I was just looking for other people because I felt-, cos that’s when I started losing my eyebrows and that’s when I kinda thought, you know, I felt quite alone I guess. And I kinda tried to find other people. I found a group and the group is awesome like people just post there. Like when they first join the group, they post their story or whatever, you get loads of people commenting and stuff. It’s like several thousand people. It’s not everyone responds to everything but it’s just quite a nice little, like, I don’t know like a support network I guess. It’s like on my Facebook, it’s a Facebook group. So every time I go on my Facebook there might be a couple of posts by people. And it’s either people saying, “I’m about to shave my head today, you know, kind of send me, send me luck,” or, “This is my new wig,” or all that type of stuff. And it’s quite, it’s just given me a sense of community and that’s why I went to blogging and to the Twitter and stuff when I set my Twitter up. The thing is I think ever since I found them that kinda helped as well like writing the blog, talking to other people. And to be honest I talk to a lot of people who are losing their hair, who are curr- in the process of losing their hair like someone from America or different countries and they feel like they need to talk to someone cos I’m kind of feel like I’ve come out the other side of it. And I felt I wanted to talk to people who are me, now a year ago because I, I was probably like one of the hardest things I’ve ever done if that makes sense. So I feel like I need. I wish I had someone to talk to me like. So I’m trying to find-. That’s why I set up the Twitter up to try and help find people and I have found quite a few people to talk to and that definitely helped me as well.
 
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Grace stays in touch with another girl with alopecia who she met at an Alopecia UK national event. Talking to her helps Grace feel less isolated and alone.

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Age at interview: 18
Sex: Female
Age at diagnosis: 10
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And it was just this big meet up of everyone and they kind of put you into-, the adults went and listened to speeches from dermatologists and things like that, and then they put young people and then like children into kind of three different groups. So, cos the main outcome that I had for the day was to meet people my own age with alopecia, cos I never or like meet girls my age that had had alopecia, because I knew that boy but we weren't like friends, but I wanted to have that kind of- almost like a pen pal type of thing. I wanted to have that person that I could be like, “Look, I'm really struggling, have you got any products that you’ve tried? Have you bought a new wig recently from anywhere that you wanted to-, that you could share with me type of thing?”

And yeah I've met one girl that I keep in contact with, which is, I'm so glad that I got that out of that, because I think it, even if it was just one or two people I think it's really, you kind of-, it makes you feel like you're not alone, and you're not the only, I think the big thing for me was that I wasn’t the only young person that was suffering with that, because it felt like I was, and I felt like I was the only person my age that was going through this and nobody else, why me, type of thing, why isn't anyone else why haven’t I met anyone else that has it? Is it, am I the only young person, or is there-, is it only really typical in older people or younger people, type of thing? But you're just kind of wracking your brain and you're like ‘I really need someone to talk about this’ cos obviously I had friends and stuff, but they don’t really understand what it is to have this condition that affects your whole life, like you’d they could talk about it with you, and you could be like, “I feel like this, I feel like that,” but they can never sympathise with it, like it can be never be like, “Oh yeah, that happened to me the other day when I was like this,” and I was like that cos that’s never really how it worked. 

So, I think finding that other person to kind of-, we don’t even talk that often, but I think when you do it's kind of like, “Oh yeah, I can chat to you about this and chat to you about that, and you get it.” I think that’s the type of thing, it's that you feel like you're kind of alone in it a little bit sometimes. So, before I contacted the charity I felt very kind of isolated, and like I was the only person in the world that had this, so definitely finding someone else to talk about it was a big deal.
Online videos were mentioned by some people. Rochelle and Hannah both used YouTube videos to learn how to manage their hair loss, find products and wigs. Annie X and Rosie watched YouTube videos on different ways to apply makeup.
 

Watching YouTube videos of people who have alopecia helped Hannah to cope with her hair loss.

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Age at interview: 21
Sex: Female
Age at diagnosis: 16
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So the first thing I did was, I actually looked at, I typed in ‘alopecia’ on YouTube and there was a video that came up and that was the video that inspired me to shave my head. So, it was just a girl who was 14 and she shaved her head because alopecia had affected her. And yeah, that was the biggest thing for me. So that’s why I started kind of making videos to help people, because I actually found the kind of help and support through videos online. So, it was more of a personal connection. It wasn’t just someone writing down. You could see what was going on. You could see that it was actually okay. And, I like personally just found it much nicer to kind of watch people online with alopecia and stuff and then, throughout the years I’ve got more into talking to people with alopecia and helping people out with alopecia and making my own videos about it and getting the kind of feedback from that, which was really positive.
 

A tutorial for people with no eyelashes or eyebrows gave Rosie tips on how to apply make-up.

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Age at interview: 18
Sex: Female
Age at diagnosis: 12
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I got a lot of my information off those sort of websites of charities and I think actually that was where I got a link to this YouTube tutorial like make-up that you could try if you’ve got alopecia. You know, “This is specifically for no eyelashes, no eyebrows,” like oh, “You could do this that and the other,” which was where I sort of started with all my make-up tips. But yeah, generally the internet became one of my good friends for looking at things. So just, you know, the odd bit of research if I was thinking ‘oh, I need to back that up before I start talking to people about it’ or ‘oh I wonder what I can do, sort of, you know, how would I make my appearance look better’ and so like improving getting my eyebrows correct first time, you know, what would I do. Sort of go onto Google and just type and find things.
Some people felt there were particular benefits of online information and support:
  • finding it easier to talk about emotions
  • feeling more comfortable about talking to others than face-to-face
  • having access to support any time of day or night and especially on ‘bad days’
  • feeling part of a community
  • being able to access people all over the world and getting information about treatments in other countries
Others said they would rather meet and talk in person. Rochelle says that “especially in the black community, people love to talk about hair and what you do with your hair and how you do it”. She gets advice on products from other people at hair salons. 

Many people said knowing about and meeting others with alopecia helped them feel less alone, especially as many thought of it as a ‘hidden’ condition. Grace and Danny both met and made friends with other people their age at events organised by Alopecia UK. Arti goes to her local support group. Before attending the group, she said she had no idea that there were people living in her area with alopecia.
 
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Danny has met other young people with alopecia. He went to a theme park on a trip organised by Alopecia UK.

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Age at interview: 14
Sex: Male
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Do you know anybody else who has alopecia?

Yeah.

Yeah. Could you tell me a bit about who they are and how you met them?

I met one of my friends who went to this alopecia group day out and we went to Alton Towers, I think it was, all together and he has like-, he has bits of hair growing out but not everywhere.

What was that day like at Alton Towers?

Fun. 

Was it good?

Yeah.

And was that the first time that you met other young people who had alopecia?

Yeah, mostly.

Yeah. Yeah. Do you keep in touch with any of them?

Yeah.

Is that over email or do you meet up and-?

Both.
Many people talked about wanting to raise awareness about alopecia because they found that other people often don’t know much about it. Sometimes other people had assumed that their hair loss was caused by chemotherapy treatment for cancer. Some young people with alopecia tried to raise the public profile of the condition through a variety of means, such as social media and blogging, giving assemblies at school and fundraising for Alopecia UK. Hannah makes online videos about her experiences of alopecia to help others. Ben set up a Twitter account  to let others know they could contact him for support.
 

Rosie uses social media to raise awareness of alopecia.

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Age at interview: 18
Sex: Female
Age at diagnosis: 12
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If I’m using social media to talk directly to my friends, then, often I will talk, if I’m talking about alopecia it will be in sort of offhand jokes like oh, you know, ‘I did this really silly thing today where you know, my wig nearly came off, that was quite, you know, that could have been quite funny’ and have a sort of laugh through that. If it’s more of like an open social media so sort of Facebook posts which is generically what my blog automatically does then I just generally use that as a sort of informative, this is what’s happening. This is what my interpretation of it is and what I’ve experienced, just generally promoting it. And then I’ve used social media for other things as well, so it’s now October, but September is Alopecia Awareness Month and sort of throughout that all the sort of alopecia charity pages that I followed would sort of post a lot of things like, oh, you know, ‘Alopecia isn’t you know, it doesn’t stop your life. You can continue living it.’ And so, I would also like share that and raise, try to raise awareness through my Facebook as well. And I think I definitely put a post up like, you know, I don’t completely open up to the entire world about my alopecia, but those who know about it know that at least I’m passionate about, sort of what it is and helping people understand if people could do that all over, you know, it wouldn’t be so much of an issue. But social media is very powerful, depending on how you use it. 
 

When Ben shaved his head and put a picture online, he was overwhelmed by the positive response he received and the support from his peers at school.

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Age at interview: 18
Sex: Male
Age at diagnosis: 14
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So over the summer holidays, I came back and I had no hair. I had to like do this year of, you know, speeches and things like that. But when I shaved it, I was almost like-. That was probably the-, nervous, before I walked in the hall that day I was- I could really feel myself going cos obviously it was big reveal type of thing unintentionally. But once you’ve done things like that, I just think nothing else really matters if that makes sense.

And what was everybody at your school’s response?

Very supportive. I mean I, well act-, when I first did it I put a picture online with my friends and I got-. I was overwhelmed to be honest. I didn’t real-, I didn’t expect the amount of people to be as supportive. I didn’t think that they’d be mean but I didn’t expect so many people to be like really kind of gathered and you know, like sent me respect, stuff like that. You know, it was just quite-, it was just very nice. So I just kind of felt like everyone was behind me with that. I’m quite lucky like that I think because I think sometimes if you don’t have that and some people might not have that – it can really affect you. But I definitely feel like the support I had at my school and stuff was really- and my family and everything was really helpful.
 
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Imogen feels more confident now and hopes modelling will raise the profile of alopecia.

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Age at interview: 17
Sex: Female
Age at diagnosis: 7
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When I first started modelling, I applied for an agency and, even though I’m not with them anymore they sent me to [photography studio], I think it’s called, in [city]. I basically had my test shoot and it was over and done with as far as I was aware, so we went into a little room, me and my Mum, and we were talking to this lady who worked there about what my reasons were and everything for starting modelling. And I mentioned to her my reasons and that reason is to help people, other people with alopecia, because I myself have alopecia. It was obviously a longer description than that but I’m trying to keep it simple. Then she was like, “Really, well why didn’t you say? We will get you back into the studio.” Then I was like “Ah, okay.” So I went back into the studio, they closed down for about an hour and a half so there was just me in there and, yeah, I just did some photos. That photo that I showed you included, yeah.

So the first test shots had been with your wig?

Yeah.

And then the second ones were- [without your wig]?

Yeah.

Totally unexpected, I didn’t think that would happen but I’m glad it did.

I also use Instagram and that helps me a lot when I do like a photo shoot or I need to like spread awareness about alopecia, I would just put a post up a photo. Yeah then people start following me who have alopecia. 
However, some people found it scary when they thought about making their alopecia public and visible to others. Annie X and Beth both said they didn’t like photos of themselves on Facebook because it affected their confidence and they sometimes compared themselves to others. Krista didn’t talk about alopecia on Facebook because she didn’t want people to feel sorry for her.
 

Annie X closed down her Facebook account because she was comparing herself to others which made her feel anxious and upset. Now she only uses Twitter.

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Age at interview: 15
Sex: Female
Age at diagnosis: 11
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So, like I don’t have Facebook, I don’t have anything like that. I literally only have Twitter, because that’s only one picture. But I know that because there’s so many people in the world and if they’re all posting pictures and you’re going through all their pictures looking at who is prettier than you, that just doesn't help, but that really didn't help me. Cos I had Facebook for a bit and that really didn't help me. I was like obsessed with looking different and yeah, it doesn't help at all. 

So did you make a decision to close down your Facebook after a while?

Yeah, I decided to close it down just because a) I wasn’t really using it other than to [laughs] stalk at people and look at their photos just like cos I wanted to be like them. But then it also upset me because I couldn't be like them for obvious reasons like I couldn't dye my hair blonde or I couldn’t dye my hair black or I couldn't curl my hair or I couldn't straighten my hair. And I remember everyone went through a phase of having like really skinny eyebrows, being really tanned and having really straight hair. And it’s like I can’t be part of that because my hair wasn’t there. I was pale, because I am incompetent with stuff like fake tan [laughs] and I didn't want to, and like I don’t have thin eyebrows. So, it, I just, I wanted to stop so I wasn’t comparing myself to people because it was just upsetting me.
Not everyone wanted to talk about their alopecia to others. Some felt it was unnecessary. Annie Y has had alopecia since she was three and always wears a wig. She doesn’t tell many new people she meets and only when she knows them well because she doesn’t want to be known as “the girl with a wig”. Meghan doesn’t feel her alopecia is severe enough to need support from anyone else apart from family and friends. She didn’t think it would be helpful for her to “sit and talk about feelings”. People’s approaches to talking about alopecia sometimes changed. Ben said he used to ‘bottle up’ his feelings about his alopecia but is now more open about it. 

A few people felt talking to others might make them more upset. When Krista’s hair fell out rapidly at the age of 22, she didn’t want to talk to anybody about alopecia but now she thinks it would have helped if she had. Beth had alopecia patches as a toddler which returned again when she was 11 years old. She says she found little support online that she could relate to. Sometimes people disagree with other people’s views on forums which can cause conflict and upset, as Imogen found when she got negative feedback from others about the views she expressed on the triggers of alopecia areata. A few people said they felt worried or daunted about talking about their feelings in a group of strangers and Emilie says she would prefer it if it was a small group.
 

Initially, Emma was nervous about going to her local alopecia support group but it was really useful and now she recommends it to others.

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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.
 

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

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Age at interview: 24
Sex: Female
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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.
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