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.

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.

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.

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.

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.

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.

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.

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.

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.

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.