I’ve met a few people that, they’ve, who’ve had alopecia for about five years as well. They’re older though. And like nobody knows that they’ve got alopecia. I just think like, How, how can you feel, how must you be feeling inside to keep that in?’ But I just think it must be really difficult cos you’re constantly hiding. Like, you know, you’re coming in and you’ve, you’ve got to quickly put your wig on and stuff. And it must be tiring. I’ve like said to people that I find it a lot easier just, just telling people I’m bald and whatnot. Just, and it just makes you a bit more confident about yourself. Cos, you know, I, I feel confident, you know, not wearing my wig now. Not confident like, I feel confident in that I’ve accepted it a bit. I’d feel confident in my, more, I’d feel more confident in my appearance if I had hair, just because you feel more feminine and whatnot

I think as doctors we have to be careful not to just focus on the skin problem, on the scalp problem. And obviously it is a big problem, it’s not just a little patch of hair loss that needs some cream, it’s obviously a big problem to individuals and to way-, the way they perceive themselves, their self-image, the way other people perceive them. It can mean that they get bullied or teased at school. And so doctors-, I think we do have to remind ourselves that that emotional aspect is very important to patients. In terms of resources, there is a very good patient support group called Alopecia UK. And it does have an area for young people, HeadzUp. And so there are lots of resources there where people can find out more information, find out how other people have dealt with it. And I think I’m a great believer in patients comparing experiences, and the, there are things that other people have found in practical terms, living with the condition, that we don’t know anything about. And so I do think it’s very helpful to put people in touch with other people. Sometimes I see a child with alopecia and if I say to that child, Have you ever met anyone else who’s got this condition? They’ll say, No, and they think they’re the only person in the world. So I think that putting people in touch with other people is very reassuring and it makes it feel more normal and it gives them an opportunity to talk about the problems in a way that they can’t talk about it, to a health professional.

It’s a journey. I don’t think any one is the same. I think I did mention that in one of my blogs before is the fact that like, you know, no one has the same experience but it’s quite.- But I think there’s like a general pattern that you kinda-. There’s ups and downs. And I felt like at first it was down when I was first losing my hair before I shaved it. It was just down, down, down. There was no up-side to that whatsoever. After I shaved my head I’d say it made me feel better, a bit better and then I lost my eyebrows and it was down again. And I just think the emotional bit is the fact that you’re out of control and the fact that you can’t do it-. That’s, that, I think that’s what the hardest thing is. I think that’s the same when I talk to my counsellor before. It was the- I likened it to-, cos I was talking about grief, I was likening it to when I was- my nan was ill and it’s the fact that you’re out of control. You can’t do anything to help it and it’s a horrible thing happening, not saying it’s the same as someone dying, losing your hair, but it’s the same kind of feeling. You know, you can’t do anything to help. I think that’s what people don’t like. That’s the scar-, that’s a scary thing. And I felt like ever since, I mean in February and March when I start-, I started that group- not the start of the group, when I joined the group. I felt it’s just been up, up from there. I obviously have days or like when I get a little bit sad about it. I can’t-, I can’t lie and say, you know, I’m happy all the time. I do look at myself sometimes and think kinda wish that I looked a bit different. But I wouldn’t say that’s my overall outlook. I’d say, you know, I shouldn’t wish away- wish it away because I should make the most of it because I think I could have gone the other way and been like quite reclusive or, you know, not-. I could have just wanted to stay inside, not be as, you know, talkative I guess, I don’t know, I’m quite chatty [laughs]. But I feel like- I think, I think sometimes when you feel a bit-, you feel a bit lonely I guess and you kinda put that-, you kinda blame-. I think everyone feels lonely sometimes. I think I’m quick to put it down to alopecia and I think- but everyone has this. It’s not just you but you-, but you know what I mean, it’s almost your reason for every- like for everything straightaway. I have to remember it’s not, not at all. Like just talking about now, I’m saying things I haven’t actually thought about before so it’s quite nice, you know, talking about it.

I was 22 when it happened, I’ve turned 23. And obviously with [daughter’s name], I feel like I missed out on those few months because I didn’t pay, I didn’t pay attention and it was when she was learning and learning to talk and learning to count and all sorts of things like that and. And I wasn’t paying attention. Cos I, I was too wrapped up in what was happening to me, obviously I still cared for her and did everything sort of did nappy changes bath times and all sorts of things like that but my head was never really in it I, and I felt like I never spent time with her because when I got up in the morning, like now morning times is, I don’t start work till 3 o’ clock so morning times is mine and [daughter’s name]’s we play we go out go to play group. And now, and back then it was just literally I would get up and I would sit on the sofa and she’d be playing with her toys on the floor and I wasn’t playing with her because I was just too wrapped up in what was happening which was wrong. Which a part of me feels like I’d, not failed her but I feel like I just missed out on a lot of stuff that she was doing. And it was even little things like in the morning whilst, whilst we were having our breakfast I’d catch up on the soaps if I was working the night before and I even stopped watching that. Cos I was watching looking at all the women thinking look how beautiful you look with all your hair and I’ve got none, even down to watching telly is affected me watching telly, which was strange, it was so strange. Even [daughter’s name]’s kid’s programmes there was women on there with hair and I didn’t wanna look at them cos I didn’t have any which was strange. You don’t think it will affect just normal everyday things like watching the telly.

And then I think it was a couple of weeks after that and it was just constantly coming out and I couldn’t wash my hair because I would like get the drain all laced up, and when you live in a shared house that really annoys people. And just like brushing, I couldn’t brush my hair. Like I would panic about brushing my hair because it would just come out and I, I’d been wanting to shave it for a while and then one night it was I think it was about 10 o’clock at night and I had a 9am seminar the next day, and I was like, Guys can you just like shave it please? Cos I’m just fed up. And they were like, Okay. And they all like gathered around in the kitchen and I was just like, Don’t watch me. Like it’s horrible. And unfortunately the clippers lost battery half way through, so I had to then like snip the rest off, but I think as soon as I’d got all of the hair off and it was gone I just, it was really like liberating, it was nice to not have to worry about constantly being reminded about your hair coming out. So I think that was when I realised that the worst thing for me was it coming out rather than not having hair. Yeah so I think, I mean it was, it was a positive experience for me definitely. And something I would do again if I ever had to. Because just I think the relief of it, especially when you’ve been living with your hair coming out for like the last four months it’s, it’s nice to not have to worry about it.

I think it’s really difficult to explain to people I have an autoimmune disease cos they’re like, Oh no, do you want to have a lie down? Are you okay? And it’s like, No, like I feel perfectly fine, I’ve had blood tests, everything like I’m completely healthy. But then I don’t have any hair and obviously when people see somebody without hair they assume they’re having chemotherapy so they, it’s something that you associate with people being very sick. And I think it’s quite interesting the way that you interact before when they assume that you’re sick, because you’re like, Do you want me to do a cartwheel like to prove that I’m fine? Like is that going to make it better? Like I have people offering me seats on the tube and like I feel bad cos like I feel like it’s kind of fraudulent cos I’m not, I’m not sick. Like I’m fine. But then you’re told that you have an autoimmune disease and it’s kind of difficult to like understand that you’re well but also that you have a disease that clearly affects you physically and visibly. And I think, I think that kind of thing needs to be explained to people that just because you have a disease doesn’t mean that you’re necessarily sick.

I moved schools when I was like 8. I remember that being like a bit tricky cos I had sort of-, I went to like a really small village school, and then I went to like a much bigger school, and it was like sort of explaining to people that I didn’t have cancer, that kind of thing. But I just think I’m really lucky; like I’ve never had any bad experiences, and like I’ve only ever had-, I’ve worn a wig since I was 14 and it looks really similar to the one I’m wearing now, and I’ve just never really had any issues. I just think either I know really nice people, and I’ve always known really nice people, or like people just are really understanding. Like I know that people-, I watch interviews all the time; watched one this week on, it’s was like This Morning, and a little girl had gone on and she had alopecia and her grandma did, and they were talking about like the social stigma that they’d, she’d like lived with her whole life, and like I just really don’t feel like I’ve had that at all. Yeah obviously, I think my parents attitude towards it was like they treated it like not a problem, so I didn’t get any sympathy, and then, not like in a mean way [laughs], but so then I never really viewed it as this big problem, and so then nobody else really does in my life either, it’s not really something I talk about very often, or that I ever needed to like get therapy or like. I never really get-, this is like the, a whole, the first time I’ve ever really talked about properly with anybody cos I’ve never really needed to. So, I’ve never really had any like really big problems growing up I don’t think, which is obviously I know people do but-, so I must just be quite lucky I think.

So you think it’s partly to do with like your attitude towards it as well, and your family’s attitude that-?

Yeah, maybe. But I also think-, yeah I think like something’s only a problem if you make it a problem. And I’ve got-, I’ve just got really good friends and I think maybe they’ve just been-, I guess people would have asked them about it. I don’t really know. Like I’ve just never, nobody’s ever sort of like directly asked me like, Can you tell me about your hair? People just aren’t like that, I don’t think, and just out of respect that that just wouldn’t be the kind of thing to do and would let me tell them. And most of the time, like nobody even realises; like I know that most of my friends in [city name] have absolutely no idea, which is just funny, like that I can live with my two housemates who I’m such good friends with, and they have no idea. Like it is kind of funny. I am lucky in that I like, like the wigs I wear are like real hair so it is quite similar so people wouldn’t really notice, so I think that makes it a lot easier as well. So I don’t have to talk about it sort of.

I sort of went into a shell and I remember when I did go out, I had sort of hide, sort of hide behind my parents, hide in shops, not really want to do anything. I always had to get the bus every day, which isn’t the big a deal. But when you feel like everyone is looking at you because you are weird, it’s especially hard. And I remember I was on the bus once and these two boys from another school came up to me and they pulled my bandana off. That was really, really difficult because then all these strange people on the bus have seen like my hair with missing patches and stuff. And so after that I was really scared to get the bus by myself. So I remember some days I would walk home if other people weren’t getting the bus and that’s a good 40 minute walk just to avoid the bus. And I am still scared of doing stuff by myself, I’m getting better though. But I still can’t walk from one end of [city] to the other without pretending to be on my phone, just in case people are looking at me, because I have this-, I’ve got it in my head that everyone’s always looking at me just because they did. And they can, they have the right to look, because normal 15 year olds don’t wear bandanas or don’t have hair that looks like a mushroom. But so I’ve got it in my head that people are always looking at me, which didn’t help my self-consciousness at all. But, but I remember I used to sort of breakdown essentially. I used to have many breakdowns where I would just be like I can’t be good at anything. I can’t build on from who I am until I am perfect as I am. So I would be like, I can’t try and do this as a career and I had to quit dance and I had to quit guitar just because I didn’t think I’d ever been good at anything again. And so people don’t really think it’s that a big a deal losing your hair, but the emotional side of it is, is really difficult.

At the beginning of secondary school, obviously that was very, very difficult cos it’s, you’re in an awful situation anyway. Bullying is rife and people like new making new friends and stuff that was awful. And then as it got better and like I got more comfortable in school it was a lot easier. And then from being in sixth form to now, so the last 3, 4 years that’s been just so much easier cos I am- I’m adult enough now to accept that it is, that is my life and it’s not and people like people my age now they don’t bully, like that’s not a thing like so I think I’m glad to have grown up and be OK with it now.

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 faade 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.

I feel like I’m, I don’t know how to explain it, I feel like as I’ve gotten older, I, I look back and I think I’m a better person because, well, not better person, but like I wouldn’t be who I was without it and I think like, Oh if I had hair. This sounds stupid, like if I had hair, it’s actually, I would have-, I think I would have turned like cos of the schools I went to and like things like that, like I changed schools, at one point, just because it was like everyone seemed to know and I wanted to like start afresh, and so there’s been a lot of occasions where I just wanted to start afresh. So I think the people I’ve met along the way, I don’t know, I think I just realised that, yeah, I’m me because of it. Even though, obviously, I’d like it to grow back it’s kind of like I’m more than happy as I am like, yeah, I don’t know [laughs]. If that makes sense. Like it’s just hair. It’s not me, kind of thing.