Could you tell me a bit more about what the UV treatment was like?

Yeah, it was funny, it was strange. It was, I can’t really explain it. I remember being very excited to have it. I remember initially being nervous. I’d heard, again I’d heard different like takes on it from different GPs. Once one told me that you can only have it three times in your life. And I was just like, Oh, my God, I’m gonna use them all up and then… something like that. Another one said, No, it doesn’t really matter or something like that. It just depends on your needs and stuff like that and your skin. I’ve got really fair skin. So there are concerns about me using UV treatment in general. So I remember like, well, you’d go in and then you would sit like in your waiting area and stuff like that. You’d inform the nurses that you were there. The nurses were brilliant. And you’d all be in the waiting area. You would sit and there’s people who also have psoriasis or some form of skin condition that’s there. And then you’d get called in. You’d go behind your curtain where your UV pod thing is, or whatever they’re called. You would get undressed. As a man you’d have to put a sock over your, your penis, cos obviously your skin’s very thin around there. So that couldn’t be exposed. You’d put goggles on to cover your eyes. Some people had to put masks on their face as well. And I had really small doses of light because my skin was really fair. So I mean my first time, I think I went and you have to get all undressed and everything like that.

And I think I was in there for like 15 seconds and then I went out. And then I was doing that, and then it slowly increased. And I think it got to like 40 seconds or something like that being there.

And then could you tell me a bit about the light therapy treatment and how you had to do that treatment?

Yeah, I had to go three times a week normally Monday, Wednesday and Friday. In the morning, before school you’d just be in like a room where you’ve got machines around you. It’s a bit like a stand up light bed. And you’d wear goggles because it was ultraviolet lights. And you’d stand in your underwear so that you can get your skin and you’d be in there for about ten minutes and you’d do that three times a week until it helps.

Did you ever have any sunburn or side effects from the light therapy?

No, no, because they because I was young they didn’t give me a very high dose. So, it was gradual.

The experience of kind of having the treatment was fine. It was quite, almost nice to be around other people that were g-, were going through it. I remember seeing this young girl. Again this would kind of, sort of try to put it into perspective. Do you know what I mean? I’m so conscious of myself. And she had really bad, I think it was psoriasis down one side of her face. And, and just seeing her, and I just remember being really cheered up by her because she was like so rowdy and so kind of confident and cocky. And she used to bring her friends with her from school. And I just remember thinking, You’re amazing this girl. And I’m sitting here and like I’ve got a few patches on my back or something like that. Well, it is worse than that and it is, and it means a lot to me. But I just remem-, and then this girl used to bring her, all her like schoolmates with her cos she didn’t want to go on her own. Or cos, do you know what I mean? Cos it was boring for her. Poor girl had to go like and stuff like that. And she just seemed like, so kind of like, Yeah, whatever. So kind of, It didn’t matter about it.

I remember seeing this guy that I really fancied there and, and being quite happy that he had psoriasis, cos I was just like thinking, It’s not just me. And, and so, cos you just assume that kind of like everyone who’s like ugly has like a bad skin condition. I know it’s terrible to say and really judgemental. But someone that like, it was quite nice to see that someone, ha-had I seen them on the street, not knowing that he’d come to that clinic, I would’ve been really envious and angry almost at him at points. Being like, Fuck it. Like probably got perfect skin, perfect life or something like that. And, or if I saw him in a bar. Kind of being like Oh I’ve got stupid fucking, look at this guy. I wish I was like him. And that sort of guy was sat next to me, also undergoing what I was going. So that kind of almost brought people like together in the same space and we were all just all different walks of life. And so it was quite nice in that sense to go.

What about potential treatments for the future, if there is any that you are considering?

There was somebody that I met at this group tries out new treatments and there is this thing being developed by Philips, which I’m a bit wary about, cos Philips is commercial and it does, you know, commercial things. So it’s not medicinal. And it’s sort of like a belt with a UV light on it. And I was asked to try it out, but it only really works on arms and legs and because the majority of my psoriasis is on like my trunk area, I couldn’t really use it. But that’d be interesting to use.

But it’d be good if there was some way of having light therapy in your home. But then, it would be abused, I suppose, cos it can be dangerous and you can’t do it long term. But I think that’d be so helpful, cos it can be a bit annoying having to go first thing on a morning like twice or three times a week. But for me, that’s the most helpful thing. So it would great having something in the house that you could use that for.

Did you have to take any time out from school to get to your appointments?

Yeah at some points, for example some of my light therapy was during say it was 2 o’clock and I finish at 3.15 so I would have to take the last period off to get there and get back and etcetera so I wouldn’t have to-, it wouldn’t really be a thing for me to come back in. But if you are, if you do have psoriasis and you look at it oh I’m gonna get time off school, that’s great’, do not look at it like that, you need to be at school because I have missed out on quite a lot of learning because of it and now I’m feeling it a bit now because I’m having to revise and study a little bit harder than everyone else. But if you, if you do have the opportunity to do it outside of school hours go to the appointment or book appointments at that time because it is helpful to you and it should be beneficial to you. And yeah, so I did miss quite a lot of school not a considerable amount but a little bit of school which in important years is- a little bit is worth a lot. And so I did miss a little bit like I missed afternoons, I missed first periods and I missed first like registration, I missed assemblies and stuff like that. But yeah, so I did miss quite a decent amount of school.

So at the time I had UV it was really convenient for me that it was – I remember, we timed it quite well, how we planned it. We did it in the afternoon cos obviously they sort of knew I was a student, so they were like, We won’t give you a 9 am appointment. We did it so it coincided with the end of two of my lectures a week. So it was when I’d finished for the day and it would be me walking home for the day. So it was really like, obviously it was a bit of an inconvenience cos you have to do it twice a week, but like the impact was limited as much as possible. So it wasn’t too bad. But I know it would be like a massive inconvenience if I went through it again.

They were so accommodating of the fact that I worked shifts. I was a little bit more difficult because I’m so pale skinned, I couldn’t do two consecutive days whereas other people can. But I couldn’t so they, but they were really, really accommodating of my shifts and so was my work, because I work at the hospital I would pop off my shifts and just go get it and then come back. If I was on night shifts they would either give me the first appointment of the day or the last appointment of the day to try and make it easier for me to get there and back and not have to break up my sleep just to go get a five minute session, cos it’s so quick, they were like, Seems a bit unfair to make you come all the way. But, like I say, it was, work were really good with it, cos they would just let me off. If I was on day shifts I would just pop off the ward. Everyone was just going, We have to work and you’re popping off for a sun bed.

[Laughs]

So it was, like I say, I can’t fault my work for the way they helped me and like I say, but it was, it was alright. And it was, like I say, it was dead quick, dead easy and by the end like I say, they just-, if I was ever late, because I was on shift or whatnot they were really good about it, so.

I was referred to dermatology at the hospital and I was seen within a few weeks, so the process was a lot quicker going through Occupational Health which surprised me, actually. Didn’t expect it to [laughs].

Do you know how long you would have had to have waited otherwise to see a dermatologist?

I think my appointment probably came through about six weeks after the original appointment in the community with dermatologists. Cos they, yeah, they said it wouldn’t be till the Christmas and the New Year or actually yeah, cos I saw on Facebook, well you know, you go back in time’ thing. And it said-, I’d put a status on saying that I needed phototherapy but that I wouldn’t get it till the New Year and that was this week, so it was probably a good six weeks that I was probably waiting for the appointment. And I’d got the letter asking me to go when I, the day after I’d had my first session of phototherapy at the hospital so it was quite a wait, so I think it’s one of those things that’s probably in quite high demand but not a lot of people can do it.

It’s one of those things that when they told you about side effects, you’re like oh no’, cos I never use sun beds or anything like that. So, to be told, you know, You are increasing your risk of skin cancer. That was not a nice thing. But when, you know, you have to listen to the facts and use your sensible head at that point and kind of weigh out the pros and the cons and I thought well, there’s a chance that psoriasis may never come back. And if it was to come back that I would spot the plaque and I would be able to say, Right, I need to start my treatment again. So I was like well I better just, just do it.

So I was using this ointment and then kind of, yeah the ointment’s been pretty great. I still would have like flare-ups and it’s always affected my confidence. And it kind of got to a point where the ointment, they wanted me to come off the ointment because it’s one of those things. You shouldn’t be putting your steroids on your skin all the time. I was just like, I couldn’t give two shits. I’m gonna put, this is, like I’m not coming off it. And then they said, Well, why don’t you go for UV treatment? And then I said, I’m not. Because you have to come off it like before UV treatment or something like that. Or the positive effects that UV treatment will have been taken away, you’ve got to wait weeks or something before you see any kind of direct impact. And I was like, I’m not, this is how much it affects me. I’m not having six weeks’ window where I’m gonna have bad skin just so some UV light just kind of makes it better for like however many months or something like that.

And then end up, realising that this particular ointment you’re allowed to use while having UV treatment. A lot of the others you weren’t allowed to use. So I was actually on an ointment that you were able to. So I then agreed to have UV treatment. And then I weaned myself off the ointment as you could see the effects change from UV treatment.

So, and the experience was fine. I got burnt once by it on my face. And since then, they had to give me a mask. I didn’t want to, they wanted me to use masks from the beginning because my skin being so fair and, on my face. And I didn’t want to because of I’ve got psoriasis on my face. Just tiny bits around my nose and stuff like that, but I wanted them to go away. And it did go away, and I was so happy. And then I got burnt. And it was so bad because my face went like purple almost. And I had the goggles on as well. And it was like, kind of like four days. And I had to go to, I worked in a bar at the time and I had to go to work and people were like, Oh, my God, like what’s happened to you?

If I have light therapy, I’ll make sure I wear the goggles and make sure I wear you know, appropriate underwear and things so I’m not completely exposing my whole body to it, cos it can be quite powerful. And then, similarly, when I’m out in the sun, although the sun’s fantastic for it, I’ll always, always wear sun cream, a high factor sun cream, cos it’s so important. So it’s just, it’s knowing, it’s like getting the balance right, really, because it’s so easy, especially when I’m feeling down about my skin to put loads and loads of cream on or to, you know, go out in the sun with no sun cream on. Even go on a sunbed. At times, I did go on sun beds, but I’ve stopped doing that, cos it, in low doses it does help. But it’s, it’s not worth getting into the habit.

And, I mean, I said earlier about when I was at school I’d had some light therapy and then I wanted some more, so I thought, oh, I’ll go on the sun beds’, but like no way would I go on the sun beds again, cos it’s just, it’s not worth it. I only ever went on for like two minutes at a time or three minutes, y’know some people go on for ages to get a tan. And I was never interested in getting a tan. I was interested in it for my skin. But the light therapy at the hospital is so much safer that, ask for that. If you have psoriasis ask for that. Don’t go on the sun beds, cos they’re too dangerous. That was the mistake I made. But yeah, definitely the best treatment I’ve had, the light therapy.

What happened with the tanning beds? Did you have sort of a bad experience or was it more just concerns?

Just concerns, really. I had sort of like a card where I bought 25 at once. I’ve never used them all [laughs]. But I would go in once a week for three minutes a week. Something really small like that. But then, I’d been going for a few weeks and I thought well, I’ll have six minutes this week and then I burnt. And I thought, oh god, if these are burning my skin, they’re so powerful, like y’know, I’m not sure. I don’t, I don’t want to really risk it. And then, I’ve read so many stories about people who are getting skin cancer from sun beds and it’s just not worth it. And if you want a tan, get fake tan. I mean, I’m quite pale anyway, so I don’t really fake tan. But I’d rather do that than go on the sun beds now, just cos of the risks involved. There are so many risks. And I wouldn’t risk it.

I had six or seven maybe more months where I had, it might even be as long as a year, but you, I kind of forgot. And, I don’t want to say I went back to normal life, because I feel like it was normal anyway and I just get on with whatever. But I kind of almost forgot that there was, I mean I still had my scalp so it was kind of like keeping me like wasn’t completely like gone. So there was that. But it was kind of weird, like my leg would, the funny thing with, like my leg would like itch. I tried for as long as possible not to scratch it, I was like, come on, Steven, be good. And then I’d think, oh hang on a minute, there’s nothing there to like, there’s no problem, you can scratch that leg. Don’t worry about it. So then it was like [gestures frantic scratching].

[Laughs]

And it was quite nice and you kind of forget about it, completely. And, you kind of get to that unconscious like it’s in the back of your mind somewhere but it’s not really there. And then, I think it was my arm started again, just a little patch. I was a bit like [sigh] here we go again. But then I thought like, you know what’s coming. You know what you’re dealing with. Would try and keep it under control. And I think actually trying has kept it as small as it is now.

But I did get treated not too long ago with light treatment and I had about 24 sessions of light treatment and that actually worked. But the sad thing is once I’d finished my light treatment it was all gone apart from like one or two on my stomach and I said to the doctors, Look, there’s still two there. I think I should keep going just so I can happily get rid of them, because I have a theory that if I scratch that it sort of that moves along my body but I don’t think that’s scientifically like supported or anything but that’s just my theory. So I said, Can I like have a few more sessions to get rid of these ones on my stomach? and obviously they said, No, cos they thought it was gone. And about a week later everything just started coming back. And obviously that was a very hard time for me because I thought I’d got past it but then it felt like I’d just been dragged back into like a deep hole of psoriasis if you would, if you would say that. And that I got really quite depressed and that was at the wrong time because that was just before my mock exams going into in Year 10 and obviously than did sort of hinder my mental state a little bit as in I was depressed, I didn’t wanna go out, I didn’t want to revise.