They asked how I was dealing with it quite a lot, because I used to, like question people. I used to question quite a lot of people about it, and like ask loads of questions to people. But I don’t think psoriasis hit me emotionally; like it did make me feel quite down at times, and as I got older it made me feel worse at points when people were like saying horrible stuff; and I couldn’t wear what I wanted. I couldn’t do the activities I wanted to do, but then after that I kind of just got to grips with it, and realised there’s no point getting myself down, cos I’m dealing with it and it will get better, so there’s no point getting myself down about it.

Why do you think it’s started affecting you a bit more as you got older?

It kind of took, like, because of my clothing that I wanted to wear what I wanted to wear, and I wanted to wear make-up, and I wanted to do this and like go swimming and everything, but I couldn’t because I couldn’t, like I was scared to go out in like shorts because I’m scared people will like laugh at me or anything, or be horrible. Because I used to walk round and like get funny looks off of people, and I was scared that would happen if I walked round in like the clothes I wanted to. And then I couldn’t wear make-up cos it would affect it. And then the chlorine used to sting my psoriasis, and so did the sea. And they say that it was good for it but it really hurt and stung, so I didn’t wanna like do that.

Do you think there’s an emotional side to having psoriasis?

For me I don’t think there has been but that’s because of what I’ve said before of where I have it, it’s not in obviously places and secondly when I had it I had it at quite a convenient time, that it didn’t stop me doing anything. if perhaps those two, those two things had been different if it had been in an obviously place, if it had come at the worst time of year when it would have stopped me doing stuff then I would have had a different experience, it would have been more unpleasant, I won’t say pleasant cos it’s not pleasant, but it would have been more unpleasant and I’d of been affected more by it and it would have made me a bit more upset, it would have held me back more and I would have had more negative emotions and negative experience associated with it. so as it is, I’d say no for me it’s not an emotional thing, it’s more of a practical thing, it’s something I have, its there and I have to deal with and I’ve had a year now of learning how to deal with it and I know like I say what works best for me in terms of kind of lifestyle choices, whether they’re placebo or not, and what creams just through trial and error work for me or not. So yeh I think it’s more practical than emotional for me.

Occasionally I’d feel a bit sort of sheepish about my hands because you kind of, because it looks so flaky and it looks, I think it looks worse than it actually is. so if you’re kind of talking to someone or you have to shake hands or something you’re a little bit self-conscious because you’re thinking Oh what are people going to think of me, I’ve got horrible dry flaky hands, they’re going to think that I don’t take care of myself or that I’m not a very healthy person or I’m not a clean person and obviously the irony is that you’re, well, it’s not related to any of those things, I shower every day, I’m clean and what not and there’s nothing you can really, there was nothing I did to bring it on. but nobody else knows that and it’s not something you bring up in conversation like justifying that you are a clean person or justifying that it wasn’t your fault that you came down with it or whatever. And so in that sense it was a good place to have it because it was much more severe on my feet than it was on my hands.

I feel like it’s a really strange journey. It’s been a really strange journey for me because when it’s at its worst you always think I just want it to get even a slight bit better and I’ll be happy’ and then when it does, you’re not and you’re just sort of never really satisfied. Because you’re always looking at other people’s skin. For some reason, you’re always comparing yourself to people whose skin seems seemingly perfect. And whenever- with me because of my skin tone being quite tanned, when my psoriasis went, I was left with lots of hyperpigmentation, so I have found myself kind of even being frustrated at that, I mean it was not quite perfect I can still see where it was and all the marks. So you just- there’s this constant feeling of never being satisfied because it’s not like it was before, you know, it had ever existed in your life. And you’re always kind of constantly striving to get to that point where it’s like it never happened. And it, that’s a really long journey and often it doesn’t ever happen where you get to the point where it’s just not visible at all. So things were quite hard then to come to terms with when you have psoriasis that, you know, your skin might never be the same.

Could you say a bit more about hyperpigmentation and scarring for example and your experiences of that?

Yeah, I think it is more likely to happen in like darker skin tones but I-, you can get both, so I sometimes get light patches and I sometimes get dark patches. Don’t really know why, some go one way and some go the other. And the problem is most of the time the doctors say, You’ve got to ride it out, that’s gonna take, you know, it could take months, it could take years. You know, if you keep like exfoliating and tanning eventually it evens out, but, you know, there are some areas I’ve had for like three or four years that haven’t completely evened out. And there’s some that took a couple of months and now I can’t see them at all, so. It’s just all, there’s no, there’s no kind of rule to it. But that was something that I wasn’t forewarned about by any dermatologist or doctor and then just discovered afterwards that that, that oh this has happened. And then they sort of said, Oh yeah, that’s pigmentation.

So yeah, I sort of just had to deal with it as it was there. And I mean it’s not so bad with the summer because I tend to go out in the sun and sort of feel like things are evening out.

I don’t really like complaining about my psoriasis to friends and family anyway because I don’t feel like it should be very much of a problem and plus it comes across a bit whiney. I think the only reason why I would complain is when I just, when it just gets to me. Because there are those days when you could be doing something and your arm can start itching for example and you could start scratching and then you’ll notice just how sore it is and you’ll wish, I wish that I didn’t have this. And then if you’re not careful then that can start snowballing into something like you know, I wish I didn’t have this, I wish I could just cut it off and be done with it, [uh] I wish weren’t born with this altogether, why me?’ And you do start to really think about these things that’s when you have to be really worried about how it can affect you.

What do you sort of do in those situations to stop it from snowballing, snowballing with those kind of thoughts?

The only thing I guess I really did with it was just immediately, to, just to try to think about something else, like I’d focus on doing my homework even more for example I’d literally just do whatever I can to take my mind and my eyes off it. Because as the old saying goes, out of sight, out of mind. And it worked, especially in this case because as soon as I stopped noticing it then it’s more or less back to normal. Relatively.

I remember being told that it was psoriasis, and then I sat there and I didn’t know what to do, because I was seven, and I didn’t even like want to go to the hospital; I just wanted to go to school. And then I sat there and I remember my mum trying to explain to me, like-, I knew that it was something to do with my skin, but I didn’t know what it was, and like I used to ask my mum weird questions like, “Am I going to die?” and everything, because at seven, I didn’t know like the side-effects or anything.

And I remember sitting there once the nurse had told my mum, and I just sat there, and like loads of questions went through my head. Like, I didn’t know what to think, because a seven year old doesn’t expect to sit in the hospital and be told that she’s got a skin condition, which she could have for the rest of her life. And I just kind of sat there like, this is going to entail on my whole life; I could have it for the rest of it, and like people are going to think it’s ugly and horrible, and like I’m going to lose so many people because of it. Like I knew what was going to happen, and then it did eventually.

I didn’t know what it was, it was I didn’t really understand what psoriasis was it was just something that I had that other people didn’t. I didn’t mind it to be honest I just, it felt kind of cool when you, when I went into primary school cos I stood out and eventually it got worse just cos I used to get bullied for it but yeh I just, the bullying didn’t bother me to be honest and the school sorted it out.

What do you mean about the initial was sort of a bit cool to stand out, do you remember how you felt about that at the time?

Yeh it was just cos I was different, I mean there were so many young children around here everyone, everybody was the same and cos a lot of like my friends had, we’d all been born at the same time.

Yeh.

And they were all, whenever they got together they were all talking about their children but mum always came back and said how many times I came up in conversation just because of my feet and how I was different, how I stood out but I quite liked being seen as special and a bit different to be honest.

So it’s good different.

Yeh.

I think having it now it’s been, I seem to keep saying it’s a good time, but quite a good time to have something. Because as a child you’re reliant on your parents to kind of sort it out, to do it. As an adult, I don’t really know, maybe it’s less as an older adult, you might be less adaptable, that might not be correct but my impression at the moment seems to be that at this point in your life, particularly whilst at university, you’re at your kind of peak in terms of adaptability because everything around you is changing so much and university is such a kind of manic time with so much happening and so much change going on and you grow up massively and your personality changes and you develop into a person essentially over the course of three or four years, or in my opinion you do anyway. And I think it kind of gets subsumed in that, is that a word? I think it’s a word, I don’t know. [Laughs] it gets kind of meshed into that university experience for me so it’s just another aspect of a lot of change that’s going on at the moment, if that makes sense. So I feel like I’m best equipped to cope with it right now because I’m kind of at a peak in terms of adaptability so I can just take it on in the same way that kind of you’d add a meeting to your calendar or something or you decide that you want to start playing a different sport this year and you add it on. I’ve gotta sort of put some cream on at night, you just add it on in that sense. So it’s not something that’s come, it’s not something out of the blue, it’s something I can sort of tag onto a lot of other things so it just kind of becomes part of life.

So stress is a definite trigger for your psoriasis?

Yeah. Yeah, definitely. I mean, last year when I was working as a teacher, it was my training and it was my NQT year, it’s called. And I found that very stressful, because there was a lot of planning, a lot of marking and then the actual teaching as well. It was very very full on. And so, my skin got worse during that. And a few years ago, my mam, my mam had meningitis and she was taken in suddenly. And, within days, like my skin got a lot worse. So I think stress massively, massively plays a part. But, it’s y’know it’s finding ways to deal with that stress. So I exercise regularly, which really helps my stress. Cos, I mean, at school I was awful at PE [laughs] I hated PE. But now I really do appreciate how important exercise is. And I’m not one of those people whose really interested in having a flat stomach or, you know, perfect beach body. But I do it for, for my mental health really, for, to stay calm and to deal with my stress, cos I find that cycling or running or any type of exercise really. Going to an aerobics class is really good. And just getting out the stress and calming yourself down. And then again, my boyfriend and my mam and dad are really good at just talking things through. And if I’m ever, I’m very lucky to have those really supportive relationships. And my brother and sister as well. Because if I am worried or stressed about anything, I can just talk to them about it and I know that they’ll be really nice and supportive. So that’s really good to have that.

When I was younger I, well I suppose when I was younger and older it felt kind of awkward – I suppose that I didn’t, when I was younger I didn’t totally understand why they were taking photos and why there were so many people, but I hadn’t had a great experience of hospitals so. When I was older I went to we used to get called in for like there used to be a regional or whatever and people come from all different hospitals and then they’d just people there would take photos and ask some questions that was, that was quite stressful and it was also quite annoying because I used to waste a lot of time at hospitals and in the back of my mind I always knew that whatever they came up with wasn’t going to change anything. But yeh.

Why do you think you thought that it wouldn’t change anything?

Cos you know when I started going to these, you know, I’d been there, I went to them about 12 to 14 years old and nothing had changed yet and I didn’t see why a doctor from Newcastle was going to come up from any, come up with anything different from the doctor from Oxford so.

What about a job in the future, do you think your psoriasis might affect any future jobs you’d like to do?

I really hope that it doesn’t affect what I want to do in the future. But, as I want to be a nurse, like a play nurse, because of obviously my story of psoriasis I kind of learned to know most of the nurses there, so I kind of like, they inspired me to be like a nurse when I’m older, and that’s what I want to do. And I think I don’t think it would affect that because of like I’d be more worried about other children, and making them happy.

Yeah. Could you say a bit more about the nurses, and how sort of meeting them and getting to know them has sort of inspired to want to do something like that?

I’ve met loads of nurses over like the period of my nine years, and they all like made me feel really special and happy. And it’d just be some of the comments they’d say to me sometimes like, I’d be walking for a blood test, and cos I didn’t like them I’d get myself really worked up, especially when I was like nine. And they’d always used to put in little comments that would make me smile.

Or when I was having blood tests they’d play with me, and like make me happier, and like that’s kind of inspired me because they made me happy, and I want to make other children happy, so that they feel what I felt when I was at the hospital.

So all of the side-, all of the major side-effects are basically about your immune system being low and you being more likely to get like serious illnesses. But the ones that I experienced were just, I had bad headaches and I felt nauseous and certain like food would make me sick. So like diet coke would make me feel really ill and things like that. Which was strange, like that wasn’t written down anywhere that I could read. I just noticed it, that when I wasn’t on it I could drink it and I felt fine and when I was on it I, like yeah I felt weird. And it would just make my stomach like in pain, I’d get cramps all the time. So yeah, I-, and also it affected my mood like a lot. And that was something that I wasn’t that aware of, but my friends and family would tell me a lot. So I became more irritable and I also became a lot more depressed and angry and, you know, sort of emotional and crying all the time about things. And also aggressive, you know I pushed people away a lot of the time and even when the cyclosporine was helping my skin, I could feel like it was still really affecting my mood. Cos usually when my skin’s better I feel like a lot calmer, [laughs] I’m a lot nicer to people when my skin’s better. But with cyclosporine, I struggled with my personality. I don’t know, it felt strange, it felt like I couldn’t really recognise myself. I’d look back on it now and think you know I just, that was a completely different person. Most of the time angry, just angry all the time. And I felt like I wanted sort of-, it was weird I wanted to talk about it all the time because it was like, it consumed my life and I wasn’t really going out. But at the same time when I did go out I didn’t want anyone to know. So when I was at home with my friends, you know, it was kind of all I’d talk about, to the point where like my mom and dad would often say to me, you know, like There is nothing we can do, like you’re on this medication and we can’t talk about it 24/7. You know, you have to just like try and cope, and try and see the bigger picture. And I think everything would anger me, like every time somebody told me to, See the bigger picture. You’re on medication. You are gonna be fine. You’re not dying of anything. Everything would just kind of anger me and I’d just sort of lash out. And I feel a lot calmer on this medication, it seems strange to think that medication could affect your personality so much, but it did. And I instantly sort of saw the difference when I came off it and I went on other things, even though my skin was still bad I felt different.

It’s definitely worth talking to a counsellor if you can and either going through your dermatologist and talking about the fact that you’d like some support or like looking for it independently if you don’t feel like you need someone who deals with specifically skin conditions. But I felt like it, that one session that I did have it was nice to speak to somebody in the hospital at the same time as going for an appointment. And somebody who I know deals specifically with skin conditions because I do feel like it’s a different kind of depression because it is linked so much to how-, to a condition and how you feel about yourself. And it’s not abstract like you don’t know why you are upset. You know why. And you, you have this root cause and it’s about dealing with something that you might have for the rest of your life and you probably will and you’ll probably be trying things for it forever and it’s about coping with that. And I think that it’s completely normal to find it hard to cope with the idea of having something forever. Even if it isn’t gonna to kill you, it’s still hard to cope with the idea of something might never go away fully. So it’s worth talking to someone.