It got really hard in like Year Five when loads of people were being really mean. Because they didn’t know what it was, they’d bully me because they didn’t know. So, instead of asking me what it was, they thought it was better just to call me names, and be horrible.

And I remember telling my mum that I didn’t want to go to school. So, I had quite a lot of time off cos I didn’t want to go in because of people like saying stuff to me. But it wasn’t-, I don’t think it’s like my skin that affected me at that time; I think it was the fact that loads of people were bullying me. And when I was little, I wanted to be like well liked; like you know when you’re a child you want to be well liked.

And then, as soon as like Year Five come, I lost like nearly all of my friends because of it, because of all the bullying, then everyone got involved, and thinking that they were like the better people by sticking up for the others, so I lost mostly everyone.

Wow

So, I didn’t want to go to school or anything.

And then what happened when you moved to secondary school?

I had to explain to everyone. I explained to my whole tutor group on the first day what it was, and it wasn’t contagious and everything. And then I got-, some people said comments like sometimes, but nothing really happened in secondary school. Like people always come up to me like, “Oh what’s that on your face?” and everything, but I felt like I could tell them because I’d had more experience than when I was in primary school. I didn’t even know in primary school; I just sat there listening to my mum and the doctor, and I’d only pick up on certain things, but as I got older my, like understanding, got better, and then I used to research it more, like, and more, so that I knew more about it, so if anyone asked me I’d be prepared to answer them.

Well I just kind of -, I’ve only really mentioned it a few times for some relationships; some people just haven’t really asked but it was more someone that didn’t really ask much questions anyway, whereas like the relationship that I’m in now I did mention to him at the start of the year, cos obviously I had to say that I’ve got hospital appointments and he’s like, “Why have you got hospital appointments?” So, I had to go in a little bit more detail but he’s been really supportive over it and he’ll always be like, “Oh it’s getting better, you can see how much difference it has made,” and he has been really supportive over it. But just in past, just one of those things I’ve just kind of avoided talking about, it, it’s there; I’ve just got bad skin and that is it.

And just kind of left it.

Like it took me a long time to admit to my friends that I had psoriasis. Like if I got it at16 I probably didn’t tell people till like 21. And I, when I graduated from university like I was probably more confident and started to care less and less about kind of like what people thought and the sort of social side of it. And I was kind of over the stage of my life where I was going out all the time and like, you know, I kind of moved back home and then did start to tell people. But yeah, so for so long I wanted to kind of like keep it this secret, so that when I was out, it didn’t sort of exist and it wasn’t part of my life. And I got quite good at hiding it, so when I did tell people, like most people didn’t know that that was even happening, so.

How did you feel about that sort of hiding it and not being able to speak to anybody about it?

Yeah it was, it was difficult and it was frustrating like I said earlier about having to spend so much longer getting ready. Those kind of things frustrated me because you want, you, there was no like spontaneity. You couldn’t just decide I’m gonna go out and I’m gonna see this person. You had to really think about it, you had to really think about what you were gonna wear. Because I was still in that stage where I didn’t want anyone to know that I had it, so I had to work really hard to make it look like I didn’t have it. So you’re kind of in that cycle where-, if I’d been honest maybe I wouldn’t have had to spend so long getting ready because it, you know, if you could see a bit it wouldn’t matter. But it, it’s just one of those things of a skin condition where you just, you find it unattractive and you’re always going to find it unattractive. You’re never gonna wake up one day and think psoriasis actually looks really great. Like you’re always gonna find it unattractive and want to kind of, like suppress it as much as possible so that people don’t notice.

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 feel that because being female and having it and especially some places, females can be a lot more conscious and we do like to hide a lot of things. Especially having like , like friends and wanting to be in a good friendship group and males and want -, at this age wanting to get relationships and stuff, that it can be a little bit, ‘Oh well I don’t wanna be able to show this cos people might see me and be like, “Oh what, what’s going on?”‘ So, I was like always conscious of that which is why I’d like to cover up and sometimes I got -, I did get like a small patch on my eyebrow so I’d always make sure that I wore, I wore make-up to try and draw attention to that. I don’t bother wearing make-up much anymore but I’d always just make sure that I’d -, if I wore make-up then I’d look nice.

And I’m always one of those that I’d always wear nice clothes so that people didn’t feel -, I’d look nice and it kind of just draws it away a little bit, and it’ll draw my attention away from it especially if I’m going out to new places, meeting new people.

The other big thing in terms of like the emotional aspect of it was like, intimacy. And relationships and stuff. And throughout school and college I didn’t have a boyfriend or anything like that. And then at university I met somebody who I really, really loved and, and you know, I wanted to be close and to be intimate and stuff. So I just, I was really honest with him. But I remember one time we were getting ready to go out and he said, You’ve got something in your hair. And it was like a piece of skin from my psoriasis. But he didn’t know I had it. And I was really like, [moves arms around] It doesn’t matter, it doesn’t matter. I was very defensive. And I think he was a bit [sideways glance], you know, he was a bit taken aback. But then, once it got more serious and I told him all about it, he was completely fine with it. And he’s so supportive. And lovely and understanding. And I think a lot of people will be. You know, people shouldn’t be nervous about relationships or about telling people about the condition, because it’s part of who you are and if they love you, they’ll love you for exactly who you are. And I feel very lucky to have that, to have that relationship. So that sort of anxiety about that has gone now, cos I’m lucky to be in a nice, loving relationship. But, yeah, there is a lot of anxiety that comes with it and, and emotional aspects that come with it, so it can be difficult.

Could I ask a bit more about the process of telling your partner about psoriasis and how you approached it?

Yeah [laughs], oh god. Well, we’d been seeing each other for a while and I’m quite a, you know, a sensible girl and [laughs] and I’ve been brought up a bit like a Catholic education and stuff like that, so we didn’t get close or anything like that, for a while. And then, yeah, it got to the point where we really liked each other and we wanted to, but I thought, I can’t, I can’t, like I can’t do anything without him knowing that I’ve got this. And so, I don’t know, I think, I think we, he’d come round to mine and we’d made something to eat. And it was just over dinner, I told him, I just said, Oh, you know, I’ve got something to tell you. And it sounds so serious, doesn’t it, and so like cheesy, but there is no other way of doing it. And I said, you know, I’ve got psoriasis. And he didn’t know what psoriasis was [sniffs]. I just said, it’s, I explained what it was, you know. And I said, you know, I’ve got it here and I’ve got it here. And I understand if you don’t want to see me anymore. And he was just like, Why would I not wanna see you anymore? It was so like, it seemed so ridiculous to him, so ridiculous to him. But once I’d described it, I just said, it’s basically very, very dry skin, patches of dry skin around my body and it’s because my cells develop a lot faster than normal cells. But it’s in sort of, it can be in intimate places as well. And he was completely fine with it. I think, at first, he was fine with it, cos he didn’t want to be mean [laugh] and be like, ergh’, but then, you know, when we did get intimate and got closer and everything, it was fine. It was completely fine. And I think you’ll be more comfortable being intimate with somebody if they know, because it would be so much more nerve-wracking if you hadn’t told them and then you were going to do something like that and they’d be like, Oh, well, what’s that? That’s awful, you know, that wouldn’t be very nice. So I think I’m glad that I’d told him before we did anything, so then it was easier to be intimate and close afterwards.

I find I can talk to like my close friends about it but I still find that quite tricky, because some of the things that I understand about it, they don’t. So, I kind of have to be careful in my explanation, because if I explain something and they’re like, “What?” It’s like, ‘Oh I have to explain it this way instead of that way.

Could you give me an example of that?

Like, when I was talking to them about like what it’s like it’s a chronic inflammatory skin condition and everything it really confused them because like you don’t hear some of the words most of time; and like it took a lot of like time to explain like the different treatments and what it entails, how it helps you and everything, because they didn’t really like, they didn’t have any experience with it, so didn’t really know.

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.

Yeah. It’s really not affected at all. Most people are really, really supportive. It’s not something that-, it’s like-, I think it’s on the same level as acne; like my friends wouldn’t judge me for how I looked; I won’t judge them for how they look, so psoriasis is just like another part of that really. I think definitely with like relationships, like if I wanted a boyfriend then maybe that would be more -, like it has in the past, like has sort of like-, I’ve sort of struggled with that. Like, well if it’s just like on my face and things it’s like explaining like what it is and then maybe thinking that I’m not like-, I’m not attractive because of that which like when I’ve like been feeling quite like self-conscious about my psoriasis, when I’ve. It’s been like-, even if it’s not been that bad and I just have had a really like bad-, like say for a month it’s been quite bad then going well, boys won’t find me attractive because it’s really like-, it’s really noticeable, everyone can see it, it’s right on my face’, and I can get like quite distracted by it at school or at like social events like, alright OK everyone can see it, it’s on my face like, everyone’s looking at it. Like they might not even like it might be like- like no-one notices it, and I might even ask, I might even ask my friend and go, “Oh can you see it on my face; is it really noticeable?” and them going, “What, what are you talking about? I can’t see anything.” But like because I know it’s there like I fixate on it and I can like, in like my mind’s eye I’m like everyone can see it, everyone’s looking at me. Even when they’re not they probably even aren’t, they probably haven’t even noticed but I think if you know it’s there like it just, for me it really distracts me.

In terms of activities it’s like, like the gym and things like that, like it’s kind of the same as like social-, socialising would be, so like I just wouldn’t want to-, when it was bad I just wouldn’t want to go out. So that would include like doing any kind of activities. I’d like, like if I was gonna exercise, even though I hardly do, it would be like by myself. I’d rather kind of be by myself. And I could see, I could feel myself wanting to cancel things all the time. So I’d kind of like work myself up and be like, ok I’m gonna go to this’ and be really confident about it on the day before and then on the day just be like I’m not going. Anyway my skin’s not, I’d, my skin looks awful, I’m not going. I don’t have the energy to spend three hours trying to make it look fine, to put make-up on everything, to find something to wear. Like you know, I would just back out all the time. And I could feel people kind of be disappointed and because I didn’t want to tell them what was happening, you know, I just sort of just looked like I was kind of like flaking on everything. So yeah, it did, it did affect me badly. It’s been better since I’ve kind of been honest about it. And I weirdly felt like I could only be honest about it when it was kind of better, so that it looked like it was sort of in the past. Like I sort of, I didn’t wanna show people it at it’s worse and sort of have that look of like shock and disgust. So when it got a bit better, then I would talk about it and be like, Oh I’m on medication because my psoriasis used to be really bad and, you know, I felt more confident talking about it when it was behind me. It’s really hard when it’s at it’s worse to just be open about it and just be like, This is what I have. Because like you, you just hate it so much, you can’t imagine that anyone else would feel any differently to the way you do. And it’s hard to see it from an outside perspective. And I think, you know, everyone in my life has been like absolutely like great with it, and like interested in like talking about it, and the medications. And then you tend to find out lots of people have other problems and skin conditions and things that they’re dealing with that you just sort of didn’t realise. And I have been really grateful that it hasn’t been on my face, cos I look at a lot of my friends who like suffer from acne and I do feel like, you know, at least I could like hide it. It’s so much so much more difficult to hide you know the area that everybody sees first. And you like can try so hard to hide that, but it’s much more difficult.

Did you ever need help applying any of the creams, for example, to parts of the body that are difficult to reach?

Yeah. So that was another- another housemate job that had to be done. I had to just hand someone a steroid cream and said, “I can’t reach this bit [points to back], can you go for it?” So there was a sort of rota of people that had to do that for me. And obviously once it’s on your hands it’s really greasy and horrible, so it takes ages to get off. You have to wash it with like soap and hot water and stuff. So for lots of reasons it wasn’t the best job to have to do. But no, they were quite good about it. Yeah. Unfortunately, the back was probably the most itchy bit. And trying to get- get cream all over your back [gestures reaching towards back] was quite difficult, so they were roped in to do that quite often. But no, they did alright, they were quite good.