It’s gotta kind of be an assessment of what you think you can offer and if not what you can maybe suggest to a person so like if someone’s really struggling you can maybe say oh well maybe, like looking down the mental health route would be okay. But then you’ve got to I think be very careful of how you put that across, because obviously people still have those old kind of views about mental health and stuff. So that can then scare a person or that can put a person off. And yeah, but then with information just from anything, whether it’s mental health to wigs or to treatment or even just like sites like an online site where you can see that people actually deal, like deal with it and have it and stuff, so.

Could you say a bit more about sort of conceptions people might have about mental health support and you said that it might be off putting for somebody?

Yeah, like I know that when I first kind of got offered support for my mental health issues, I had totally different ideas of what it’d actually be. And although like that is changing in society, still people get scared of-, because people are naturally scared of the unknown so, if, also, if-. It’s a grieving process as well, so if you’ve maybe not accepted it, you could just be like no, no, no, I’m fine. I don’t need that help. And then actually they might be thinking well, I wish I’d of taken that help’ and then they might feel like they can’t go back to the dermatologist and then say well I’m actually struggling now’ or y’know. It took me a while to actually cry over the fact that I’d lost my hair, cos I wouldn’t let myself cry over it. And it literally took a good year or so until I actually let my emotions kind of affect me in the right way that they should be. So yeah, it depends on how a person’s dealing with it and how they will take a certain suggestion or anything.

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 was on it was my photos on Facebook and I hadn’t like-, I didn’t have all my photos private. And this guy out of nowhere, just started commenting, why have you done this to your hair? You looked really beautiful with your lovely long hair’ and commented on about five or six of my photos. And then he was like, you’re such an idiot and blah, blah, blah, and shaving it. And he just jumped to the gun thinking that I’d shaved my head and someone else had commented, a different person saying, oh, the things you do nowadays for fashion. And again it was that, it was that like, it wasn’t just judging someone, it was criticising them before you even kind of make the right judgement. You just criticise straight away and obviously then, I was just like, you need to educate yourself’, y’know, blah, blah, blah. But y’know some people reacted well and some didn’t. One of the people just didn’t get the message. And so I had a couple of people having to talk to them because they just wouldn’t leave me alone. They just wouldn’t stop commenting and obviously I said it didn’t bother me, but it actually really affected my confidence. And the next week or so, I wouldn’t-, I didn’t upload any more photos. All my photos were private. I didn’t go out without a wig. And I was just y’know more conscious of what other people could actually be thinking, cos that was a real person doing that, it was a real person writing that. So that kind of brought it more, y’know, like real to me. It made it more real.

Yeah, I’ve had a lot of like misunderstandings of people thinking I have cancer and stuff and. When I was on holiday I had a couple of people come up to me and y’know thinking I had cancer and they’d had cancer and they were really, really nice and positive, because I’d bought, I’d just walked around for the first time in four years since losing my hair, it was the first week I’d gone without covering my head once. I’d never gone week without not covering my head. And I just didn’t really mind and I just did my own thing and two people came up to me and it really stood out to me that it was two difference experiences. One person, I then said, y’know, oh no, actually I have alopecia’ and he was like oh yeah, I used to have alopecia blah, blah, blah. And we really got on and spoke about it and it was easier to talk to him, cos he understood. The other person, when he questioned me and said that he’d gone through cancer, it made me feel quite bad and awkward, because [laughs] he made me feel quite bad and awkward, because when I said it was alopecia, he kind of had a blank look on his face like he didn’t know what it was, so he didn’t know how to answer. And the conversation just kind of stopped and it was really awkward, because even when I explained what alopecia was, it was almost like he felt tricked by me, because he thought it was cancer. And obviously then I felt really bad, because I didn’t wanna like miscon-, like anyone to kind of get the wrong message or anything, so, yeah. But I’ve never had like too much of a negative reaction in person. I have online, but I think people find it easier to kind of be a bit more harsh online than they do in person.

So then I noticed like a lot of things got worse. I had like struggles with my eating and my appearance and I noticed that and my family noticed that I would focus more on my appearance, my physical appearance, because I didn’t have my hair. So I’d try, I’d never feel like I looked good enough basically and I’d try losing weight or toning up and just because I didn’t have my hair and I didn’t have the control over that and I found something to control. And it makes sense now, but at the time it was just, y’know, I was lost in my own little world of not knowing what to do. But I lost the control of losing my hair and like I found something else to gain control over. But yeah, it can really affect people, so.

Has that changed over time, the sort of focus on controlling other aspects of appearance?

Yeah well, it kind of, I think it just all changes like, different things happen obviously in your life and then, I kind of had a realisation of that I didn’t have a healthy lifestyle and I wanted to get a lot healthier. And so, I started improving on that and then I realised that actually my hair started to grow a bit better because I had a better diet and I was, I was just naturally healthier and I was happier as well, because like I was so malnourished that I didn’t think very clearly. So, when I kind of, was a lot healthier, I was actually feeling a lot better about myself and I could feel confident about myself. And that helped with the anxieties then because I didn’t get as anxious. And I just, it was more of an acceptance. It’s like a massive acceptance journey really. It’s like a journey through accepting it and some people can accept it straight away and like although it’s still hard and it’s not nice to deal with, they can kind of find a way of storing that sort of thing.

I started gymnastics recently. I haven’t been for a while, but I had to decide that I was-, I had no choice but to go bald the first time I went because I thought that was the best way to get round it, because I couldn’t wear anything on my head, because as soon as I’d do any kind of flip or anything, my hair would come off, or my hat would come off and-, or I’d get too hot. So I had to push myself out there and just be like okay, I’m bald’ and go. And then that made it easier, cos then I didn’t have to worry about the next time I went. Even if I wore a headscarf, cos they knew I didn’t have hair under there. So yeah, things like that. But then, it took a lot of building up to get to, get myself to actually go without a wig, so. Yeah.

What was it like? What was the actual experience like of going?

It was fine. They didn’t say anything. No-one said anything. No-one seemed to care, y’know. I mentioned a little bit about not having hair. [Whispers/talking to dog – She’s kicking the sofa]. I mentioned a bit about not having hair just like in a joke or something and that was it. It was just a casual thing. So again, it was that thing where it builds up bigger in your mind than it actually is.

What was the process like when you went to get them done?

It was really quick and easy actually. It was, it was literally you just like, I met her and went into this like nice room and laid there and she like drew free hand what I’d like them. So she looked at some photos of like where I’ve drawn on my eyebrows and like said, y’know, I quite like this shape and this is what they were before and she looked at them all and she said, This suits your face shape. And we agreed on what I kinda would liked. So then she pencilled them in to how I’d like them. And then, I got to keep looking and kind of y’know, helped her maybe if I wanted it a bit lower, I’d say oh, can I have this part lower?’ And then she started to tattoo them. So once she’d drawn them on, it was just a matter of kinda putting the ink on and that was it, really. And so, yeah, I’m really happy with them [laugh]. Then we had, it was two, it was a two part process, so I had them done and then I think it was two months later, I think, I had to go back and get them recoloured basically, because they fade. It’s really weird, cos the pigment of the skin you kind of get your, like get your eyebrows tattooed on and then they can fade a lot and then you’ve got to go get them redone and it depends how your skin takes to it, because she doesn’t like, she asks you, y’know, does your skin-, how’s your skin affected in some situations?’ So it kind of helps her know how dark she needs to go or how much ink she needs to put on.

That was really cool, it was really nerve wracking though. I actually looked for four years until I actually got them done. And it was only because I had a really lovely lady contact me and just say, my, like, one of my friends had had their eyebrows done by them. And she just contacted me and said, You know, your friend’s mentioned you, would you like your eyebrows done for free?’ Which really took me by surprise, because eyebrow tattooing was a lot like, can be a lot of money. And being a student, I’ve not got that money to kinda spend, especially with wigs, they cost quite a lot anyway; if I want quite a nice human hair wig or anything. So I always put it off. But, since having my eyebrows done and my friend’s said it too, would never turn back, cos it’s so much better. it’s easier than, y’know, the worry of if you go swimming or anything or if you get too hot and sweaty or if you wipe your eyebrow. I used to always wipe my face and then realise I’ve wiped my eyebrows off. And so, and also it’s really like time consuming, so, like I’d spend like hours sometimes trying to get perfect eyebrows and that was very like it had a big impact on my like, y’know, my self-esteem and everything, because I was nervous about how it looked or anything and I’d always bug people and be like are you sure they’re okay?’ before I’d even walked out the door. So, yeah, I’m so happy I’ve got them.

I change my style a lot depending on my hair, so sometimes, like if I wear my really crazy wig, my pink, blue and like purple wig, I’ll have more of a kind of bright, bubbly look and like sometimes I’ll look more sophisticated if I wear just a brown one, like wig, so I do kind of I do style my look according to my hair sometimes. So, I’ll y’know, depending on what-, I did that today, depending on what I was wearing, I was like, okay, so what wig would look good or do I just go with my short hair?’ And y’know, so, yeah, I change my look according.

Is that like make-up and jewellery as well as clothes or is it the-

Yeah.

whole thing? Yeah?

It’s make-up as well, make-up kind of, I’ll style, depends, so, if I have really dark hair, I might wanna go through like, kind of heavier like eye make-up look and everything. And yeah, I just change it.

The steroid injections ended up thinning in my skin quite badly. And obviously the immediate side effects were like I had a really sore head and headaches and stuff. But other than that I think it was okay, I think. But I do have a skin condition where I get like boils and everything and the, the steroid things were kind of making them worse, so that wasn’t really good. And again, the dermatologist would always talk to me and say are you sure you wanna try this because that will then make your, like skin condition worse?’ and so it was weighing it up really.

But then, the annoying thing is, it changes depending on where you are. So, area to area, it will have different rules and it gets really frustrating. Especially people in Scotland, a lot of them get four wigs on the NHS a year and here in England you only get two wigs on the NHS, synthetic wigs, and some people can like write to their local MP and get a human hair wig, kind of accumulated to the same price as two synthetic wigs on, on prescription. But other areas will completely say, No, you can’t do tha, so it changes, really.

And did you have that difference between where you originally lived and then when you moved here?

Yeah, it was much harder to get wigs where I used to live. Whereas here I was actually offered wigs and also it was-, wasn’t as expensive and it was a lot better and easier. So, I did notice a big difference because I had the opportunity to kind of try two different areas and they were only an hour away from each other, so they’re not a massive different- and there was only a couple of boroughs in between and it’s really weird to see kind of the difference of how it’s dealt with, so yeah.

And where did you first hear that you could get NHS wigs? Cos you said that previously doctors had said you couldn’t?

No, I actually found out from a friend online and she said that she got a wig on NHS and I was like, Really, how did you do that And they were like, Well, you’re entitled to the. And so then obviously you look it up and you see that you’re entitled, what you’re entitled to and like you look up all the official charities that say, You’re entitled to this many wigs and all of that. So then we questioned, that’s when we actually questioned the dermatologist and they’d said, No to us. And then I saw another dermatologist and I was like, Yeah, you were meant to be getting wigs from 16. Weren’t you cos I was wearing a wig at the time. So he thought I’d got that from the NHS. I was like, No, I’ve been buying these wig. So yeah, that’s when, y’know, started getting, getting prescriptions, so. But then I only get a free prescription at the moment because I’m on ESA [Employment and Support Allowance] so I’m kind of entitled to that, whereas if I didn’t have any problems, I’d be having to pay prescription, so. Each wig I get, I have to pay for a prescription.

I think a big thing that’s missed out on is how rapid or how different alopecia can be, so it can vary. So some people can have like their hair go in two weeks and other people will be losing their hair over a matter of months and, or like years, and so that really varies and has in a-, it’s interesting to see the different effects, cos it can have the same effect on a person that’s lost it in like three weeks to a person that has lost it over a matter of years, but then, struggling with it for years can sometimes be tougher and also it makes it less likely to grow back as well, like your chances of your hair growing back depending on how much you’ve lost, go down. So I know that they say, I think it’s after the first year of alopecia if it’s under, if it’s over a certain amount of hair gone and without like good regrowth then you’ve kind of gone from a 70% chance or something down to like a 20% chance of it regrowing. But then it’s all just numbers and guessing because, you know, people with alopecia universalis, they say, you know, they’re less likely to grow their hair back and I know of someone that had all their hair grow back, no treatment, just grew back out of nowhere and that was after 10 years, which is really weird because you don’t know, you just, I think it’s possibly because it’s your immune system and it could maybe be a different stage.

We, we’ve kind of like, me and my family have spoken about it all the time and thought, y’know, could it be like physical health. Could it be like if you are eating enough healthy things and everything. And, my diet kinda changed recently this year and I’ve noticed that I’ve had better regrowth but it’s never been perfect kinda regrowth until I got ill and it kind of, it seems like my immune system’s kind of changed its direction into focusing on the illness instead of focusing on, on my hair. But no, not really [laughs]. Don’t know.

Would we be able to talk a bit more about how other health conditions interact with your alopecia?

Yeah. I don’t really know how, like I’m not, like majorly good with all medical stuff, so it’s all theories really. But I got quite unwell with a virus which basically, in bloods, was showing that my infection markers were extremely high. So, they were fighting, my body was fighting off something, and like the antibody, the ANA or something, the antibodies were very high and everything. And then we noticed about a month later that my hair was growing back a lot better, so the best it’s ever grown back and that was since being unwell, so since my body was kind of fighting off something very big, like it was, like stopping, y’know it stopped attacking my hair and it was attacking whatever illness I had, so, yeah. We think it could be a reason, but it’s all theory.