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Steven

Age at interview: 22
Age at diagnosis: 14
Brief Outline: Steven developed psoriasis at age 14. He has used medicated shampoos and shower gels, undergone light therapy and his current treatment is Dithrocream (dithranol). He tries to be positive in the way that he copes and says he is now more accepting of having psoriasis.
Background: Steven is 22 years old and an IT technician. He is single and lives with his parents. His ethnicity is White British.

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Steven developed his first patch of psoriasis on his scalp in 2007. His GP diagnosed it as psoriasis, knowing that Steven’s father also has the condition, and prescribed a shampoo treatment. After 2 years, Steven began to develop psoriasis on other parts of his body, such as his arms, back and thighs. Steven says that it was good that his psoriasis developed only gradually because it gave him time to get used to it. Steven has been referred to dermatology specialists 3 times. The first time he was given creams which seemed to make no improvement. The second dermatologist referred him for phototherapy treatment without even looking at his psoriasis. This was disappointing but he felt reassured when the nurses examined his skin and confirmed that he was a good candidate for the treatment. The psoriasis on Steven’s body cleared up for 6-8 months after phototherapy, although he still had some patches on his head. Steven is currently using a course of Dithrocream (dithranol) to manage his psoriasis: he has to leave a cream on for an hour every day before washing it off, and this moves up to a stronger cream every few days after testing it on a small patch. He has seen some improvement, although he has noticed one side effect in that his psoriasis patches are looking more purple/pink. Steven uses medicated shampoos and shower gels, but dislikes how these smell and feel.

Steven tries to be positive in coping with psoriasis, preferring to “learn to laugh about it” than “to cry about it”. One way he found helpful at first was to name the patches, but he stopped when doing this became a bit “obsessive”. There have been a few days when Steven has felt down about having psoriasis, but these times are very rare and usually occur when other stressful things are also happening. Steven has experienced other people asking questions and making comments about his psoriasis. Sometimes these are well-intention, such as thinking he has an insect bite, but he once heard someone say nasty things. Steven tries to be prepared to answer and respond to other people’s ignorance about psoriasis. There have been occasions when Steven has felt self-conscious about his psoriasis, such as when he has been swimming, but tries not to let this stop him doing anything. He remembers feeling really “triumphant” when he began wearing shorts in the summer a few years ago. He is also very aware of his skin flaking, so he hoovers his bedroom and car often, and brushes off his desk at work frequently. He finds that hair gel is good because it can keep his hair in one place so that skin flakes won’t fall from his scalp and means he can sometimes style his hair to cover patches on his upper forehead.

Steven does a lot of research about psoriasis, but he has found it difficult to find the right ‘level’ of information about it. He also says that the online discussion forums he’s seen were quite out dated and inactive. He feels that there is a gap about psoriasis to be filled that balances personal experience and scientific information. Steven thinks that it can be especially difficult for young people to learn live with a life-changing health condition. His advice is to other young people is to know that they are not alone with having psoriasis and to keep seeking the right treatments for them.
 

Steven talks about some of his psoriasis symptoms, such as flaking and the redness of his skin, and people’s reactions.

Steven talks about some of his psoriasis symptoms, such as flaking and the redness of his skin, and people’s reactions.

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I think cos it was quite gradual for me, I kind of learned to get used to it, I think. It wasn’t like one day I woke up and was like covered in flaky skin everywhere. I kind of like watched it almost like grow [laughs]. It can be hard. You kind of get used to flaky skin everywhere. Bought a new car that’s got black seats, which means I’m like once a week hovering, like to get rid of flakey-. Don’t do it, buy a car with like white seats, definitely [laughs]. That’s cos white seats hide it a lot better. It can be difficult, you kind of get used to like people asking you the whole time if you wear short sleeved tee-shirts. It’s like, in the summer I tend to wear tee-shirts and shorts. And people are like, “You’ve been bitten. You’ve been bitten”. And I’m like, [looks around] “Where?” and they’re like, “Can’t you see it?” I’m like, “No” [laughs] they’re like, “That big patch”. “Oh, I’ve haven't been bitten, its psoriasis”. And occasionally, very occasionally, you get some like really like nasty things. I once was in public, I was in the high street somewhere and this woman said to her daughter, “Step away from the leper.” And I was like, sorry, no, this isn’t going on. I’m like wearing a t-shirt. It’s not leprosy, its psoriasis, like calm down. And I thought like, not only is that quite bad for me, but like, if I was a person with leprosy like how would I feel, like that’s horrible. 
 

Naming some of his plaques was a coping strategy for Steven, though he now prefers not to spend a long time focusing on his skin.

Naming some of his plaques was a coping strategy for Steven, though he now prefers not to spend a long time focusing on his skin.

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I’m quite a positive person and I had to be positive. At one point, the way I got round it was by naming the patches which sounds ridiculous and it was when it first started and I had like, John, [laughs] Joan and you know. And I think that was kind of like my coping mechanism for a little bit. And then, I think I got a bit too hooked into naming them. And it wasn’t really helping at all. And I was like, okay, firstly you know this is ridiculous like why are you carrying on doing it? But like, what’s that achieving? Nothing. Let’s just kind of stop getting attached to it, almost like pretend it’s not there. Use the like 10 minutes of your day when you have to moisturise or whatever to like acknowledge it’s there and then the rest of the time just kind of ignore it unless someone asks about it. 
 

Itchiness has become an everyday part of Steven’s life. Family members sometimes tell him not to scratch, even if it’s a ‘normal’ itch.

Itchiness has become an everyday part of Steven’s life. Family members sometimes tell him not to scratch, even if it’s a ‘normal’ itch.

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My problem is that it’s quite itchy and I tend to kind of like agitate it, I think is the best word. I don’t agitate it as much as like make it worse, but I tend to kind of like try and remove the scales or something. And mum is the number one, “Stop picking it,” or like “Don’t touch it,” and sometimes it gets like, literally my head is just itchy and not even psoriasis and like right now, I can feel like here [points to top of head], I just wanna like give it like a normal-, like any other person would do, give it like a scratch. And it’ll be like, “Stop scratching your head, don’t scratch your head da, da, da”. And I’m like, “My head is just itchy. It’s not the psoriasis, please.” And I think you learn like you would learn anywhere else. You learn to live with it. You learn to deal with it. And, it’s just that kind of getting used to something that you’ve not had for the first 17 odd years of your life, whatever it was, and then bang, it’s all changed. 
 

Phototherapy helped clear up most of Steven’s psoriasis for a few months.Phototherapy helped clear up most of Steven’s psoriasis for a few months.

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Phototherapy helped clear up most of Steven’s psoriasis for a few months.Phototherapy helped clear up most of Steven’s psoriasis for a few months.

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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.
 

Steven thinks it’s easier to apply treatments to his scalp with shorter hair, but doesn’t want this to determine his look too much.

Steven thinks it’s easier to apply treatments to his scalp with shorter hair, but doesn’t want this to determine his look too much.

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It has affected my haircuts a little bit, I suppose. Because I tend, from having the treatment like that, from having, applying treatment I have it cut a bit shorter to try like get it easier. In fact, I should really go back and have it cut again. I didn't have it cut short enough last time. But then I wouldn't have like skin haircut, like all off, like bald, sort of thing. But the nurse did say to me like, “Oh that’s the best way you’ll get it to your scalp – just go have your hair all cut off”. I was like, ‘awrr, okay’. So, yeah. 

Could you say a little bit about why you wouldn't go for that haircut?

Doesn't suit me. That’s like the number one thing, like it looks horrible. I had it cut really short a few years ago. It wasn’t good. I suppose if things were really bad and we were, I was having light therapy or something like that and she said to me, the nurse said to me, “You’d have it cut really short then”. Then I would do. I’d like push that aside. Everyone says, it’s quite a big thing – your hair and having it cut short and y’know. And I think if I had to and it would really helped then yeah. But at the moment, I haven't done it because it’s not a help and it looks horrible if I have it done, so. It doesn't suit me [laughs]. 
 

Steven says having psoriasis on his shoulders and back “wasn’t such a big deal for me because it wasn’t really visible”, but it affected going swimming.

Steven says having psoriasis on his shoulders and back “wasn’t such a big deal for me because it wasn’t really visible”, but it affected going swimming.

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Then I have my back, which wasn’t dreadful, because I didn't really show it off. There was a point where I didn't really want to go swimming, because I did feel that people would, I think, arms and legs was one thing – I could kinda like cope with that. I had longer swim shorts that didn't really cover it but, it kind of like detracted from it. You could just kind of like pretend it wasn’t there. And arms was fine, but when I had it on my back and sides it really was a bit more-. I did go swimming. But I felt quite conscious about it and I knew it was there and I knew that, you kind of clock people looking. And, I didn't want to let them get to me at all, because I thought, do you know what, I’m not gonna let it stop me doing anything. I wanna go swimming, I’m going swimming. But, I did notice like people. And that’s quite difficult. I had to be like ‘pretend they’re not there, just carry on’ sort of thing. 
 

Steven struggled to find an explanation of the causes of psoriasis which was pitched at the right level.

Steven struggled to find an explanation of the causes of psoriasis which was pitched at the right level.

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With psoriasis though, I’ve struggled to find more beefy, I think is the best way of putting it, information. The bones were there. But there was no meat on those bones and to like, I’m quite inquisitive with things. I like to know what’s going on. I like to know exactly, like as much as I can understand the reason. And, you know you look up something more common and like this sounds really, I don’t wanna sound like almost cruel and heartless. But if you look up cancer there are a 100,000, not, obviously because it’s far more common than this – but there are hundreds of thousands of web pages of like in-depth information about what the cells are doing and what type of cancer you’ve got and whatever. And there is stuff about like the different types of psoriasis and that’s kind of where it tends to – you know, you can look up at Wikipedia and it goes into like the chemical compound of like what your skin’s doing. And you’re like, ‘yeah, that’s a bit too much actually. [Laughs] Like, calm down’. But there wasn’t really anywhere that was kind of like intermediate. I’m lucky that I’ve got dad and I said to dad like, “Come on mate, what’s going on?” and he kind of like helped me. But it can be difficult to find stuff. 
 

It was only recently that Steven read in an information leaflet that throat infections could set off psoriasis.

It was only recently that Steven read in an information leaflet that throat infections could set off psoriasis.

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Really, funnily, in the leaflet that came with this cream that I’ve got now, which I’ve got somewhere if you want to see it. I don’t know where it is, I think it’s in here [looking in bag]. They gave me a little leaflet. I think I brought it with me, yeah. They gave me a little leaflet and in it, it says, if I can find ah, it’s talking about triggers and it says, “Even though the exact cause is unknown, it appears that some people are more inclined to develop it than others. Many patients are able to think of someone else in the family who has psoriasis”. So that was like my dad and I’m reading this and I’m like, ‘check’ [gestures ticking]. “But it’s thought that people with a family history of the disorder only get it themselves if another factor starts it off.” So I was like, ‘hm okay’. And then I’m sat at the hospital like last week thinking back to it and then the next paragraph is, “One of these factors could be a throat infection.” And the time that I started with psoriasis, I was also a little bit unwell – I had pericarditis, they think, and a possible throat infection. And so having read that, and I’d never really linked the two together, I thought they were kind of just happened at the same time and like, I don’t really know if they were linked together. I think that could have been the trigger. But then I’ve never really noticed anything, stress doesn't tend to make it worse, like during my exams it was constant. In fact it got better at one point during exam time. Being overtired doesn't really change it. I can’t really find something to, people are like, “Oh, what you eat, da, da, da” [shakes head] Nothing. I think for me it’s just the fact that I’ve got it and that it comes and goes. I don’t really know one thing that does set me off. 
 

Steven’s dermatology nurse gives him detailed instructions about using dithranol topical treatments which are different to those in the leaflet.

Steven’s dermatology nurse gives him detailed instructions about using dithranol topical treatments which are different to those in the leaflet.

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So, how do you go from the gradations of the medications that you’ve brought in, like how’s the timing of them work?

So these ones I have been to the hospital twice last week. Kind of every, twice a week, beginning of the week just to check in with the nurse and she just checks that my skin’s okay and it isn’t blistering or anything like that, cos that’s quite a common side effect. And then she says, “Right, go up to the next one”. I have to test it on a really small patch of psoriasis that I’ve got. And then when that’s, you kind of test one with the next dose and carry on with the same dose. And then when you, like the next day, if everything is okay, you go up to the next dose. So it’s kind of controlled under her, there are labels on it with like dates and stuff. She said, “Just kind of ignore that and like whatever I say, do”. You have to be careful, because I mean she said me, there’s a little leaflet I’ve got and she crossed out every time it says half an hour and left it on for an hour. Because depending where you get different treatment from depends on what they can, how long they can tell you to have it. And what happened with me with the doctor, told me, GP, said “Use this for half an hour.” Went to the hospital and she said, “Oh, sleep with that in overnight.” And you just have to kind like make sure that the doctor kind of y’know, has got, can tell you that. 

I think if you’ve got treatment that you find is working, but it’s not kind of like working-, you’ve kind of got a bit stable with it – it might be worthwhile asking the doctor, “Is that the longest you can leave it on for? Can you do something else with it?” Because if that’s working, I did have that with one of them a few years ago, it was working, but it wasn’t quite clearing it. I said, “Is that all I can do?” and she went, “Oh, you could wrap yourself up in cling film,” glamorous, really glamorous. Wrap yourself in cling film for like an hour and keep that in and kind of like makes it more- working. And then wash it off. And then that did kind of really help me. So it’s worth, if you’ve got something that you know works kind of like asking if there’s any other way you can do it. 
 

Steven likes being able to try different emollients (moisturisers) to see which work for him.

Steven likes being able to try different emollients (moisturisers) to see which work for him.

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So a friend of mine raves over the Aveeno cream, which is like oat-y. And I remembered like when I first started, in fact it’s just come back to me, when I first started that oats were a thing and someone was like, “Put oats in tights and like put them, wrap them round”. And I was like, “Really?” I did it, it didn't help. And this friend raved over the Aveeno cream. She was like, “Oh, I’ll bring it when I see you, you can try it.” I was like, “This is bloody awful,” like, y’know. It’s not doing it for me. And funnily, at the hospital last week I got given a load of little like test pots. And I think if you can get hold of them, it’s really good. Our, my dermatology department are fantastic. They’ll let you, photo therapy nurses will let you just, they’ve got a cupboard and it’s like, “Help yourself to the cupboard. Try what you like.” And that’s quite good, cos you can then try something. As it happened, a pot of the Aveeno stuff came in. It was a little one, came in this thing. And I actually quite liked it on my hands. And I was like, “Okay, well maybe we won’t use it on all of me, but as a hand thing – we’ll bear it in mind.”

I think also, for me, a lot of it is what comes in like a handy sized packet that you can hide somewhere. Got one in the car. 
 

Steven remembers a time when a dermatologist didn’t even look up from the computer, let alone examine his skin.

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Steven remembers a time when a dermatologist didn’t even look up from the computer, let alone examine his skin.

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Then had another kind of flare up and started using cream for my arm when the other arm popped up. And then, followed by legs and back and sides. So, I was pretty covered. I did get told what percentage I was, but I can’t remember, but it was quite high. It was like, 30% which I think was quite, I can’t remember, exactly. Which is when they decided to put me through for phototherapy. Which was the funniest referral ever, because I sat down at the kind of like doctor and she didn't even look at me. The dermatologist in the hospital and she went, “After what you said, I’ll put you forward for phototherapy.” I was like, “Okay”, like that’s quite-, went and saw the nurse. She referred me straight to the nurse and we got quite a really good nurse-led clinic as well that runs alongside the doctors who kind of like stripped me down [laughs] to everything everywhere, kind of looked at what was going on, asked me all the questions. She went, “Well actually, it was a really good judgement by the doctor, because you are like more than eligible. Come with me, we’ll get you started now.” So I went from like going to the hospital just to see like what cream I could get to like complete full on like, ‘let’s have treatment three times a week’, sort of thing. Which was quite good. 

I think the doctor that didn't even look at anything, that surprised me. And someone said, “Oh, maybe she knows from what you were saying”. I was like, “Yeah, but – “I’ve gone and I’ve waited for like an hour after my appointment time, because the clinic’s running late. Like it would have been nice if you’d just even like rolled up my arms, rolled up my legs, had a glance down and been like, “You’ve got psoriasis”. Like I knew that. But the fact that you’ve looked is just something. The fact that I went next door and the nurse then like went through everything. It was a bit more like reassuring, I was like ‘arr, okay’. But the fact the doctor didn't even look and went, “Some more cream and go for light therapy”. I was like, ‘okay’. 
 

Steven thinks it’s easier to apply treatments to his scalp with shorter hair, but doesn’t want this to determine his look too much.

Steven thinks it’s easier to apply treatments to his scalp with shorter hair, but doesn’t want this to determine his look too much.

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It has affected my haircuts a little bit, I suppose. Because I tend, from having the treatment like that, from having, applying treatment I have it cut a bit shorter to try like get it easier. In fact, I should really go back and have it cut again. I didn't have it cut short enough last time. But then I wouldn't have like skin haircut, like all off, like bald, sort of thing. But the nurse did say to me like, “Oh that’s the best way you’ll get it to your scalp – just go have your hair all cut off”. I was like, ‘awrr, okay’. So, yeah. 

Could you say a little bit about why you wouldn't go for that haircut?

Doesn't suit me. That’s like the number one thing, like it looks horrible. I had it cut really short a few years ago. It wasn’t good. I suppose if things were really bad and we were, I was having light therapy or something like that and she said to me, the nurse said to me, “You’d have it cut really short then”. Then I would do. I’d like push that aside. Everyone says, it’s quite a big thing – your hair and having it cut short and y’know. And I think if I had to and it would really helped then yeah. But at the moment, I haven't done it because it’s not a help and it looks horrible if I have it done, so. It doesn't suit me [laughs]. 
 

Steven talks about coal-tar topical treatments.

Steven talks about coal-tar topical treatments.

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Gunky, gungy, nasty smelling cream is just the way. I mean, there’s one in particular that I’ve got that it’s like this brown sludge. And you can smell it from a mile off, if you’ve like knocked over the, like nudged the pot in the basket, under the sink, you know, like open the cupboard door, you’re like [breathes in deeply] ‘yep, okay’ [laughs]. And I kind of, of the thought that it might not be nice, but it’s helping and if it helps then you kind of have to like take that nasty like smelly like smelly like side effect and push it to one side. And kind of get over it. And, I’m probably quite bad like aftershave wise after I’ve used it to like try and kind of try and cover up a little bit. 
 

Steven’s current topical treatments are very time-consuming as he has to leave them on for an hour before washing it off.

Steven’s current topical treatments are very time-consuming as he has to leave them on for an hour before washing it off.

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This, at the moment, I think is the most intensive I’ve ever had something. So I started with the first one, you have to like test a little patch of your skin just to check you don’t have a reaction to it. So that was the blue. That’s the blue [holds cream up to camera]

And then you, I’m leaving it on for an hour. Sitting at home, not doing very much. It was difficult cos I went away last week, I had to kind of like find an hour to take away from everything to kind of like sit and do nothing. Then washing it off and I got told, I said, “Oh, should I be using like the real, you know, the nasty shower gel?” and she was like, “Whatever you like”. But I kind of thought, like okay, let’s be sensible here. Let’s not go crazy and start like throwing stuff at it. Let’s be like kind of like sensible. And I’m using my shampoo as well to try and like do a win double of like [gestures around head] everything. And then I was on that for four or so days and then carried on with that on the rest of my body and then picked one – the same test patch – to go up a dose. So now I’ve gone red [holds up the red packaged cream]. And I’ve now been on the red for a few days and last night went up to the purple one, tried that on my test patch. It’s quite intensive and when you think like an hour at home, it’s quite a big like thing. You have to have that hour of like, in the end of it, really it’s gonna be an hour and a half, cos by the time you’ve like had your shower afterwards and you’re not supposed to like rub. It’s quite a general thing like the doctors all said to me like, “Don’t rub your skin with your towel when you get out the shower”, especially if you’re using like emollient shower gels, because if you rub it then it rubs it off the skin and that kind of like ruins what you’ve done. So I’ve got like a bath robe that I kind of now like hide in for like half an hour afterwards, just to like gently dry off. I think this is the most intensive treatment I’ve had. Almost more than going to the hospital three times a week for light therapy, because it was three times a week, it was 10 minutes: you’re in, you’re out, you’re done. You moisturised and you got a bit sunburnt, but you weren’t like spending a dedicated hour of like sitting at home doing nothing. I think it’s possibly the worst, apart from sleeping in stuff actually. 
 

Steven says soap substitutes are part of his “everyday life”. He sometimes uses a fragranced shower gel as a “treat”.

Steven says soap substitutes are part of his “everyday life”. He sometimes uses a fragranced shower gel as a “treat”.

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You kind of get used to, I’ve had it for eight years, I’m used to like the shower gel and all the bits and pieces, the moisturiser like – unfortunately, you just have to like get used to the fact that the shower gel smells of nothing and is greasy [laughs] and you’re kinda like used to it. And occasionally, I kinda like treat myself by having like, using normal shower gel and then quickly doing it with the other shower gel again to kinda like balance it up. If I go away, I tend to kinda, volunteering for youth group, you kinda like tend to not wanna use your manky shower gel in front of like, cos it kinda like goes under, y’know, like gets on the floor and someone’s like, “Oh, that’s oily,” like, “Whose got oil in the shower with you?” So I kind of like tend to like do a naughty week and use like normal shower gel. And kind of moisturise double if I can, kind of like balance it out, which probably doesn't do anything, but it kinda like keeps me happy mentally. The stuff’s horrible.
 

Steven talks about medicated shampoos for psoriasis.

Steven talks about medicated shampoos for psoriasis.

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Shampoo I think is the best place to start. And the number one thing I always say is, just don’t expect any of the treatments to smell nice [laughs] whatsoever [laughs]. There is not one person somewhere that thinks like, ‘we’re gonna make a treatment, we’re gonna put like herbal essences in it or something to make your shampoo smell nice’. No. It’s just, just not gonna happen. Like, you have to be prepared for horrible coal tarry, smelly stuff and, I think living at home for me was quite helpful, because no-one was judgemental. If I was away living like with other people who might be a bit like [intake of breath] ‘uh, stinky cream day’, y’know like they might be a bit more whatsit. But, you just have to be prepared. The shampoo that I’m using at the moment is not, smells a bit like mothballs, I think is the best way of putting it. It’s not nice. Shampoo is a big thing. I stopped using shampoo-shampoo as I would call it every day quite a while ago to try and help my scalp. And I have tried every, almost every shampoo under the sun for psoriasis. And you tend to, the doctor tends to rotate you a little bit as well. Sometimes one’ll give you a bit of help for like six months and then six months later like ‘nah, go back to a different one’. And then you end up coming back round the circle again. I think fortunately or unfortunately, I was quite quick once I stopped being a student to kind of do prepaid prescriptions which, actually, for me was really good, because you know what you are gonna pay every month or over the year. And it means that if you wanna kind of try something, if the doctor says to you, “Oh, why don’t you try this and this?” You’re not worried that it’s gonna cost you £7 whatever it is, £8 whatever it is now and it be a waste of time. You’ve almost like paid your [laughs] loyalty card and I always say I’m a repeat offender. And you’ve paid your loyalty card and if you get like one that doesn't work so much, you’ve got the other one, the repeat prescription, the one that works. You’ve not like wasted your time doing it. Obviously, you need to look at, if you’re only getting cream once every three months or whatever then it’s definitely not worth it. But, for me like, three things a month like you know like what you’re gonna do. 
 

Steven tries not to let psoriasis have an emotional impact on him.

Steven tries not to let psoriasis have an emotional impact on him.

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There have been days when it’s got me quite down. Very few. And I think I tend to have that when there is something else going on that is playing emotionally. I remember when all my friends went to university and I’m still at home, cos I didn't go. I was working and I was quite like down in general. And then, you kind of, I kind of like hooked it, hooked it onto there and kind of like made it part of the thing. It has [5 second pause] I won’t say it’s made me upset or angry, but there is almost like resentment sometimes. Not very often. And I think I’ve kind of like learnt to live with it and I’ve learnt to laugh about it. And, I think, as I said last week a, the hospital if you don’t learn to laugh about it then you learn to cry about it and that’s really not a great way of living with it. I’m quite a positive person and I had to be positive. At one point, the way I got round it was by naming the patches which sounds ridiculous and it was when it first started and I had like, John, [laughs] Joan and you know. And I think that was kind of like my coping mechanism for a little bit. And then, I think I got a bit too hooked into naming them. And it wasn’t really helping at all. And I was like, okay, firstly you know this is ridiculous like why are you carrying on doing it? But like, what’s that achieving? Nothing. Let’s just kind of stop getting attached to it, almost like pretend it’s not there. Use the like 10 minutes of your day when you have to moisturise or whatever to like acknowledge it’s there and then the rest of the time just kind of ignore it unless someone asks about it. And I think that really helped, because I kind of like, didn't forget it was there, cos I know it’s still there, but I kind of pretended it wasn’t for a bit. And once I’d done that and I’d kind of decided that I’m gonna kind of go with it. Then, I kind of started to kind of not be so emotional about it, I think. 

I mean, there are days when I, picture pops up on Facebook or something and I think, ‘oh god, there’s a horrible like patchy bit of forehead there like awrr’. And I think but do you know what, if you look back through all the other photos, it’s there, but it’s just not as prominent and I kind of have to ignore it. And, it can be hard. But in a way I think only has hard as I make it. And I try not to get wound up by it, because there’s nothing I can really do about it. I mean, I do the treatment and that’s helping. But I can’t just [clicks fingers].
 

Steven’s had people make ignorant comments to him before.

Steven’s had people make ignorant comments to him before.

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It can be difficult, you kind of get used to like people asking you the whole time if you wear short sleeved T-shirts. It’s like, in the summer I tend to wear T-shirts and shorts. And people are like, “You’ve been bitten. You’ve been bitten”. And I’m like, [looks around] “Where?” and they’re like, “Can’t you see it?” I’m like, “No” [laughs] they’re like, “That big patch”. “Oh, I’ve haven't been bitten, it’s psoriasis”. And occasionally, very occasionally, you get some like really like nasty things. I once was in public, I was in the high street somewhere and this woman said to her daughter, “Step away from the leper.” And I was like, sorry, no, this isn’t, this isn’t going on. I’m like wearing a T-shirts. It’s not leprosy, it’s psoriasis, like calm down. And I thought like, not only is that quite bad for me, but like, if I was a person with leprosy like how would I feel, like that’s horrible. Had a pharmacy assistant recently tell me like, “What’s the on your forehead, you look really good on it.” And I was like, is that meant to be a compliment, because I don’t find that very complimentary, like it’s a skin disease, what you playing at. “Oh, I didn't realise, I’m sorry, I just thought it was just sort of like some of like skin tag or something”. I was like, even if it was a skin tag, like why would you say that. I think you just have to kind of like be prepared for people to say stupid things. Like, there are a lot of stupid people out there and don’t realise, and you just have to be prepared to like explain it. And, that’s something that I think, I’m not afraid to talk about it and I don’t think you should be because it can be a big part of you, y’know. In the summer when shorts time, I’m wearing a T-shirts and shorts, I’ve got six or seven big blotchy patches of faky- faky-, flaky skin. People are gonna ask and I think you just have to be prepared to answer them and be honest with them, because they tend to then be a bit more kind of like sympathetic I think is the best word for it. And like they always apologise, normally, when they see you and you say, “Oh, it’s a skin disease”, [deep inhale] “Oh, I’m ever so sorry, I’m ever so sorry”. And it’s just, I think if people then know they might not be so-, if they come across it again they might not be so like, “Ergh, what’s that?”
 

Steven talks about his visit to the Dead Sea.

Steven talks about his visit to the Dead Sea.

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Could you say a bit more about when you did go to the Dead Sea and whether it was intended originally for psoriasis or-?

Completely just part of a trip that I was doing. I was out there for three weeks and part of it was Dead Sea. And I was like ‘oh, that could be quite good’. And we were in for about half an hour. Cos you can’t be in too long. It was even less than that. Got the mud involved, it was great fun. You float, you can like, people reading like newspapers, like floating in the sea. And it stung a little bit, actually. Someone said to me, “Have you been to the toilet recently, going to sting”. I was like, ‘okay. I wonder how this is gonna take it’, a little bit. It was quite good at the time, so it wasn’t such a worry. But once you’re in and you’re like used to it and it stops stinging, it was fine. And then got showered off and it was a little bit, there was improvement. It’s kind of one of those things, I think if I’d gone back again the next day or a bit later on and done it again, would I have seen more improvement, I don’t know. But, the Dead Sea stuff, like the Dead Sea salts I’ve put in the bath before and that’s helped a bit, definitely. 

I think it was before the camera was running, you said that you were potentially considering about going back?

I’m thinking it. Mainly because I’ve got friends out there and I thought like I could do a little like, let’s go on holiday and see friends and skin and yay. Nothing has been solidly like thought about, I’ve been thinking about going out there for years again. So it’s just like, it might happen. I don’t know. It’s not dragging me there at the moment. I’ll see how this treatment goes, obviously. I might end up going out there and not going to the Dead Sea or going to the Dead Sea just for going to the Dead Sea for the day and it makes your skin softer. That’s lovely. But it has been something that I’ve thought about, definitely. 
 

Steven hoovers his bedroom and car often because of skin flaking.

Steven hoovers his bedroom and car often because of skin flaking.

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Cleaning the house, I suppose I’m a bit like at work, brushing it off. Tend to hoover my room, at least the main bit, once a week. I think mainly, because at the moment I’m moisturising and I know that I’m gonna like even with moisturising you do tend to, a bit of flickage [laughs]. Also I’ve not got that much carpet space in the middle of my room. And so when you’ve got like a small amount of space, you do tend to find like it does – ‘oh, a bit flaky this week, okay we’ll hoover’. The car is a place that I hoover, like I got in the car this morning and I was like, ‘God, I should have hoovered’. But then I’m quite car proud anyway as a person. So like, I’d probably be doing it even if I wasn’t doing it. Although would it be as, I don't know. I do notice sometimes round my bed, it happens, like you’re just asleep and you’ve shed your skin [laughs]. And then, you kind of like wake up. I do occasionally find like, in an odd place, like the back corner of the bed, somewhere next to the bedside table you move out and ‘oh, okay, been a while since I hovered here,’ you just like hoover round it. But I wouldn't say I do anything extra special. I just, arr, some weeks I forget about it, leave it for like six weeks and then I think, ‘Oh hoovering time’ [laughs]. I think you just kind of do what you do and each person does it differently as well.
 

Steven’s friendships haven’t been negatively impacted by having psoriasis.

Steven’s friendships haven’t been negatively impacted by having psoriasis.

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Could you tell me a bit about whether psoriasis affects your friendships, generally?

I think for me it doesn't I can see how it could. But, for me, I’ve never really had, all my friends are quite supportive and I think that’s why I’ve picked them as friends, so to speak and like, there’s been the odd comment, but I don’t think they like mean it. And it’s got to the point where most of my friends are happy to like joke about it now and I’m happy for them to joke about it. Y’know like, we were talking about a dragon and, and scales or something and someone mentioned like a lizardy thing like shedding its scales. And someone went, “Oh, just like you Steven, ha, ha.” And like, people could get upset about that, undoubtedly. But, it was someone that’s very close to me and it was funny and I just kind of had to like take that as funny. But I can see how people would be like upset and friendships could be like on the rocks from it, definitely. 
 

Steven has a Prescription Pre-payment Certificate (PPC) where he pays a fixed amount for 1 year of prescriptions charges. For him, it’s “value for money”.

Steven has a Prescription Pre-payment Certificate (PPC) where he pays a fixed amount for 1 year of prescriptions charges. For him, it’s “value for money”.

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And I have tried every, almost every shampoo under the sun for psoriasis. And you tend to, the doctor tends to rotate you a little bit as well. Sometimes one’ll give you a bit of help for like six months and then six months later like ‘nah, go back to a different one’. And then you end up coming back round the circle again. I think fortunately or unfortunately, I was quite quick once I stopped being a student to kind of do prepaid prescriptions which, actually, for me was really good, because you know what you are gonna pay every month or over the year. And it means that if you wanna kind of try something, if the doctor says to you, “Oh, why don’t you try this and this?” You’re not worried that it’s gonna cost you £7 whatever it is, £8 whatever it is now and it be a waste of time. You’ve almost like paid your [laughs] loyalty card and I always say I’m a repeat offender. And you’ve paid your loyalty card and if you get like one that doesn't work so much, you’ve got the other one, the repeat prescription, the one that works. You’ve not like wasted your time doing it. Obviously, you need to look at, if you’re only getting cream once every three months or whatever then it’s definitely not worth it. But, for me like, three things a month like you know like what you’re gonna do.
 

Steven talks about psoriasis in relation to his job.

Steven talks about psoriasis in relation to his job.

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Does psoriasis make a difference to your work life?

At the moment it does, because I’m popping to hospital for check-ups every now and then. And moisturising once a day maybe at work but that’s really just like going to the toilet and no-one probably really knows. I’m a bit flaky around my desk [laughs]. And you kind of learn, kind of like just twice a day you have a quick like brush down. It’s not dreadful, because it’s not my hands, I think. If it was on my hands then, probably would be a bit different. But, I’ve noticed, working in IT and going round to do peoples computers and like things. You’re not alone. Like, there are, even in quite a small company there are a number of other people who have got some sort of, even if it’s not psoriasis, some sort of like-, you just look round thinking ‘ooh, ooh, it’s a bit of, a bit of flaky skin there, hm, okay’. And, in that respect I think people don’t notice so much with me, because I kind of, I’m quite conscious to keep it kind of at bay on the desk, if that makes sense. I kind of am quite like, like everything clean. Don’t like dust on my monitor or anywhere so I’m kind of like wiping it down. Also, because for me, working in IT, having to like kind of feel like I’m the kind of flagship of all things IT for my company – I have to be like, ‘right, we’re gonna be not like The IT Crowd, we’re going to do it like the nice way’. And so I’m quite conscious of it. Not to the point that I don’t think I realise I’m conscious of it now. I think it’s kind of like just built in like ‘oh, a bit flaky. Right, let’s brush it down’. I can see again how it could be a thing. The odd time people have mentioned it like, “Oh, a bit flaky”. But I’m like, “Yeah, you know me, it’s just my skin, like you know, sorry” [laughs]. And they’re normally like fine with it, so.
 

Steven uses social media to learn about others’ experiences with psoriasis and share his own.

Steven uses social media to learn about others’ experiences with psoriasis and share his own.

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Twitter, I’ve tweeted about it quite a bit. I’ve been tweeting kind of once a day actually about this treatment and that was how I found this. I can’t remember exactly how, actually. I was looking at something, I think and then as happens with Twitter. Happened to find that the Psoriasis Association I think it was retweeted me a few weeks ago and someone from that followed me. He’d had light therapy that hadn’t helped him. And when I said that I hadn’t had it in the end he said, “Oh right, what you having?” and he’s kind of keeps like asking questions, which is actually like quite nice. I don’t mind that. I, I, there are a lot of different things that I do on Twitter, different organisations, different groups. And so, it’s kind of just like another one that I write things about. It doesn't like, in a way I kind of enjoy talking about it, because I think like someone might mention something that I might then be able to use and like try. I think a lot of it is really what works for you and if you see something sometimes it’s worth trying it. But you do get people as well in general being like, “Use this. Use this. Someone I know has done this and it’s amazing”. And sometimes you think, like ‘really,’ and my Nan, my Nan, bless her, she tries the hardest, but she’s the worst at like, “Hi, I saw this thing on the news today about psoriasis and they’ve got a new drug out and da, da, da, da. You should try it. Why don’t you try it? Why aren’t you using it?” I am like, “Calm down, please” [laughs].
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