Adam

Age at interview: 24

Brief Outline: (Text only clips) Adam has guttate psoriasis which initially developed on his scalp in primary school. He has tried different treatments but worries about exhausting options. Adam’s confidence has been affected by having psoriasis, impacting on his social life and sexual-romantic relationships.

Background: Adam is aged 24, gay and of White British ethnicity. He is in full-time employment and single.

More about me...

Adam first developed psoriasis on his scalp during primary school. His first major flare-up of guttate psoriasis was when he was 19 and studying at university. The medications that were recommended by GPs became less effective for him. He had to wait two months to see a dermatologist and was given a steroid ointment that worked well. Adam also underwent UV light treatment, which managed to prevent flare-ups for three months. However, Adam is concerned that the treatments offered to people with psoriasis have not advanced much in the last 20 years and he would like to know why a cure for psoriasis has not been found yet. He is worried that each treatment will be less effective and that he will “run out” of treatments by the time he is 30. Adam moisturises often and the frequency depends on the state of his skin. He also plans ahead and treats his skin a few days before a date or a night out. 

Although Adam’s psoriasis is more manageable now, he has struggled with the emotional impact of the condition. During his first flare-up, he went to see a counsellor for depression and anxiety. He spent a lot of time at home and missed his first year exams at university. His skin condition has a big effect on his self-confidence and social life because he is afraid that others will judge him and find him unattractive. His sex life is also directly affected by psoriasis as he avoids exposing his body to others during flare-ups. Adam has used excuses to avoid situations where he would have to expose his skin to others. In one intimate relationship, Adam told his partner about his psoriasis and he felt more relaxed about his skin. However, he generally refrains from telling others about his psoriasis out of fear that they will comment on his skin. Adam has found that most healthcare professionals do not have the time to discuss the major emotional impacts of having psoriasis. He emphasises that healthcare professionals should not view patients with psoriasis as “just a piece of skin” and that more emotional support should be offered. 

Adam uses the internet to research alternative treatments and other people’s experiences with psoriasis. He has seen online scams advertising cures for psoriasis which he says target people when they are most vulnerable and desperate. He believes that healthcare professionals generally do not warn against such things because they are unaware of the extent of scams present online. Adam’s advice to young people with psoriasis is to “take ownership” of their condition and be assertive when asking for treatment from a GP. He suggests going to see a dermatologist and emphasises the importance of acknowledging the emotional effects of having psoriasis. His advice to healthcare professionals is to pay attention to the mental health of young people with psoriasis as they may feel very self-conscious and vulnerable.

Adam worries about what the future might hold with the severity of his psoriasis and whether treatments, like steroid creams, will still be effective on his skin.

I do worry about the day, and I do anticipate the day when nothing’s going to be able to help me. I don’t see, I follow kind of news of progress on psoriasis and stuff like that, and I don’t see us progressing anywhere from the treatments that we use now and treatments that we used twenty years ago. And so you see that other conditions are like moving really fast in terms of what, cos they’re prioritised or something like that. And, and this is something that’s really important to me. And I don’t feel like certain skin conditions are prioritised in terms of research or investment.

And I do track that sort of thing. And I’m worried that what I’ve used is, is not going to work on me soon, because things have stopped working on me in the past. And, or they’re not as, this, this ointment that I use, it used to, I remember when I used to put it on, it would literally, I would see an improvement by the end of the day. Like it was so good when I first got it. It was amazing. Now it takes like, if I was to put it on say today, it would take maybe like four days for the effects to kind of kick in. Which is still not too bad.

Adam uses a steroid-based ointment on his guttate psoriasis. Because the patches are so small, he tends to apply it to the general area affected.

I don’t really use moisturisers. Should do. But, no, it’s just purely like the ointments that I use. And I would just put it on the areas that I have psoriasis. I kind of like, I can’t really like see or reach my, I get a bit down, down my back. So that would be more of a like, just [laughs] like slapping it on. But I’ll kind of slap it on in areas that it tend to, it c-, tends to come up in the same areas. So it comes up mainly kind of down my sides and then down my spine. And then I get bits kind of coming up on my, on my legs and tiny bits on my arms as well. So it tends to come up in the same place. So I can almost without knowing I know where it is almost.

So I can just, so like I get loads of tiny bits kind of that... Because I know kind of say with ointment and like kind of that they’ve got steroids in and stuff, that you should really like only put it on parts of skin that need treating. But if I’ve got like ten bits that are all within like a 10 centimetre radius or something like that, then I’ll just, like that whole area will just get like slapped on and stuff like that. But I wouldn’t kind of put it on a p-, like a healthy piece of skin or, or something, a clear piece of skin.

Adam’s psoriasis used to flare-up rapidly. It’s now a slower process and usually related to stress.

So usually I think it is, yeah, stress. So if I’ve had a stressful event, it can often take like a week or so to catch up and then it will just be like “bang” or come out or like-. So like the, it’s funny actually, the treatment used to be a lot quicker at responding to kind of like getting my psoriasis down, and my psoriasis would flare up a lot quicker when I was younger. I, like sometimes, this is how worried I used to be about it when I was, first kind of had my outbreak of psoriasis and actually got it under control. I could go out with clear skin and come home having had a breakout of psoriasis. And so I’d have to check myself throughout the day kind of to be like. Especially if I was going out clubbing and I wanted to go home with someone, I would, before I ever made that move I would go and have a full check of my body in the toilet before I was like, “Yeah, we can go home.” Because I didn’t want that shock to happen when I got home. Cos that used to come up, it would flare up that quick. It could do. That doesn’t really happen now. It would probably take like a few days, or it will start slowly coming up. So I would say it’s usually it’s stress, so any kind of form of stress or being, being upset or, or something like that, kind of a, a minor traumatic event or something like that. 

Usually followed by, yeah, an outbreak of psoriasis and a bit on my face or my body or my scalp.

A relationship break-up triggered Adam’s psoriasis, adding to his upset.

I remember he broke up with me. I was really upset. And that coincided with, I then had a really bad outbreak of psoriasis that medicines weren’t treating any more. So it was just getting worse and worse and worse and worse. And it sent me c-, absolutely nuts. I was so upset. I was devastated. I’d just come out of a relationship, felt so unwanted. And then on top of that you just want to kind of go and rebound. Or you just want to kind of get someone to kind of, to want you and to love you or, or something like that. And I was unable to go and do that because I was so nervous about exposing my body to people. So I couldn’t do that either. So, and I was so angry. I remember just being so upset and angry about my psoriasis. And it was just getting worse. I was getting flare-ups everywhere.

Psoriasis contributed to Adam’s depression, anxiety and Obsessive Compulsive Disorder, which had a big impact on his university studies.

When I first had the breakout, so I was in first year and it was about two months before like final exams of first year. I locked myself away in my room for most of it. I wouldn’t go to classes. I wouldn’t really go to the shops. I wouldn’t go out clubbing or anything like that. And I ended up missing my exams. The university were very understanding. I kind of explained to them that I was seeing a counsellor at the time stuff like that, who kind of wrote a letter that I had anxiety and all those things. And then they ended up letting me do resits. So that was fine, kind of. It wasn’t fine or ideal, it was. Sometimes it kind of screwed me over. But I wouldn’t go, I don’t, even today I’ve made decisions not to go places because of my skin, how I feel about it. 

I just remember being so obsessed with it at the time. I had to go and see a counsellor because of it. It triggered like so much depression. I had really bad anxiety. I didn’t go to my exams in first year because I couldn’t physically sit in a room with people or study or anything like that. So it just threw me so much and it, and, because it wasn’t, it was no longer manageable. So I never, it never really fazed me when I was able to manage it. But all of a sudden I felt hopeless. And I was just like, “This is what my body’s going to look like for the rest of my life, if not get worse.” So I, I just, I just, it kind of sent me almost OCD about it. And I used to try, I mean which probably also wasn’t good for my skin at the time, but I was just desperate to be like proactive in kind of like getting rid of it. That I would put one thing on in the morning, so I’d shower, and then I would drape myself in all the moisturisers, then I would put something on. Three hours later I would go and shower, drape myself [laughs] in all the moisturisers, put something new on. Then, and I would just do this throughout the day, different things. Like five times a day I would shower and then cover myself in the moisturisers. I used to go to bed having draped myself in moisturisers in the hope that like it would give my skin so much moisture or something like that, that I would wake up and it would be gone. I would wake up being like really slippery and soft, have a good shower. And I would just do this ritual. 

Adam became frustrated with seeing different GPs about his psoriasis.

When you have an illness or, or a disease or, or something that you live with, you’re the expert on it almost and, especially if you go see a GP. If you go see a dermatologist they do probably know more than you. But if you go see a GP they’ll know like snippets of it. And you go and you know this, this and this. And so I, I always went in and basically told them what I needed and they often listened to me. So, but I’d go in and then sometimes they would just kind of want to see what stage, how bad my psoriasis looked at the moment. So, and I often wouldn’t go back to the GP until I’d run out of treatment. And then, even then I’d be like, “Oh, fuck’s sake.” And then, and then I’d then have broke out and I’d often get an emergency appointment with a new, it would be a new GP because obviously I’d just get an appointment with whoever’s there. So they’d obviously want to see what, what was going on. So it would just be like a simple, “just lift your top up”. Because I would tell them where it is on my body. They would ask me where, where it is mainly. And I would say, “It’s mainly on my front and my back.” And then I said I had bits on my legs. So they would often just ask me to lift my top up and kind of like, and then I would show them. And then “Okay, okay, okay. Have you, have what you want” and stuff like that. 

Adam has sometimes argued with GPs about psoriasis treatments.

Usually they do, so usually they do listen to what I have to say. They might go and double-check it or something like that. They, what was it? Like they would, they would tell you to steer away from ointments. And I would often have to fight and, I’d get their reasoning behind it. I’d get that kind of the, “Steroids, and it’s not good to pump your body with like, or apply all of these things to your body all the time.” So they do, they used to try and kind of like move me away to some of the softer treatments, especially if it like, if it cleared up a bit. And then I would go to, to the GP. I would kind of ask for like what I’d been used to and then they’d ask to see my skin. And then they would be like, “I think we should take it down a couple of notches because your skin’s looking all right at the moment.” And I would say, “No.” Because I’m like, “It might look all right at the moment. But when it’s gonna be bad I don’t want some shit kind of like thing that’s not gonna work. I want the strong stuff.” And I would have to almost fight them for it. 

And I do get their reasoning behind it. And I think that’s when you have to like, there’s the, obviously for your body I get what they’re saying in terms of, “Okay, maybe you should try and, kind of like something weaker and see how that goes.” But in terms of my mind, my mentality and how it’s making me feel, I don’t care. I want the stuff that’s stronger. So, and they often do kind of bow to that cos they see that’s, kind of like you’re quite desperate.

I remember this one time actually, again I actually went GP’s. And there’s nothing against them or anything like that. But I remember they, so Dermovate, you’ve got like the cream and you’ve got the ointment. And the ointment works better. The cream’s better in terms of like, I don’t know why the cream’s better, for some things. But I know the ointment works faster. And I remember I kept asking for ointment m-, because it said it worked faster. And the GP was like, “No, the cream works faster.” And, and I was like, “No, the ointment does.” And, and it wasn’t until I went back to see a dermatologist again because this doctor sh-, for some reason wasn’t giving me ointment. And I went to see, no, it wasn’t a dermatologist, I went to see someone else. And I was just like, and they were like “Ah, do you not want the ointment? Cos it’s faster.” And I was like, “I knew it, I knew it was faster” and stuff like that. So, and then since then I’ve been back on the ointment. 

Adam varies his topical treatments routines depending on the severity of his psoriasis and plans around his social life.

So if it’s like flaring up more often than not or, then I would treat myself more. So I tend to, my, how I treat myself tends to be in response to the like psoriasis. So if it flares up, flares up more frequently I’ll treat myself more frequently. And if it flares up less then I’ll, I’ll treat it less. So at the moment I’m probably treating it like once a week, maybe once every fortnight. And that’s just like the bits that, that have come up in that time as well. So I’m not giving myself a full like coat of like ointment or something like that. So like one of those tubes of ointment, that I don’t know the size I’m describing, that can last me about six months. So, because they don’t really like you using a lot of it. But I’ve kind of got away with, “Keep, keep prescribing it to me because, because I use it quite sparingly. I use it quite kind of, quite occasionally.” But to where, like when I lived up in Scotland and it was a bad winter and I was a bit stressed and something like that, where I’d be treating it kind of almost every day as well.

So again if I knew I was staying over with someone, then I would prepare. And I would prepare in terms of like be, have, have treatments done beforehand. And I would, I would treat myself well enough. Or like if I say was staying there for like two nights, I wouldn’t bring my like treatment with me or something like that. But if I was staying there for longer, I would bring it. And then I would like plan to do the treatment at a time where it was suitable and I was being a bit, I could be a bit sly around it or something like that. Or if it was a night where “we had sex that night, that night, probably not gonna have sex tonight” or this night I’ll just say I’m a bit too tired. Go do the treatment and put a T-shirt on or something like that. Yeah, it would be, so it goes through my mind. Yeah, I plan it.

Being cold when putting on topical treatments was an issue for Adam when he lived in student accommodation.

Applying ointment’s not fun when it’s really cold in the winter. And I used to live in student, like with students and it used to be dreadful like when people wouldn’t put the heating on. And I had to sometimes sit naked and apply an ointment to my body. And I used to hate it, having to do that, because I’d be freezing cold in this flat. And that wasn’t very enjoyable. And I’d sometimes put it off because of that. And then you could be quite uncomfortable as well with an ointment on. Like when you, and then cos it was so cold I’d have to put like pyjamas on or something like that, get into bed, and it wouldn’t be the most comfortable sleep. And once I was asleep it was fine. But it was getting to sleep, you could feel it all over you.

And, but, so that wasn’t always great, that kind of routine when I kind of like couldn’t afford heating. Or, or you had to, the politics of kind of like I wanted the heating on and part. And also like, I used to, the people that I used to live with like having a warm flat was important to me because of my skin. But I, and I don’t think I, well, I d-, well, again I didn’t wanna be like we’ve got all put the heating on like today unless they, like I just wanted it on occasionally. Because I’d be in a really cold flat and I know that the cold’s not good for my skin and it makes it break out. And then it also means that I don’t wanna treat my skin so easily because it’s a really uncomfortable experience. So that wasn’t so great. But then now I live with my parents where it’s like warm all the time, where if I want to I can like walk around in like just my tracksuit bottoms and like no T-shirt on. And if I thought, “I’d better treat my skin” or something like that, I can go up and put it on and just go and sit down and no, no one will batter an eyelid or anything like that. So it means I’m probably more active in terms of looking after my skin than I was when I lived in this like freezing cold flat where it was just like, one, it was bad for my skin in the first place and, two, it was then very uncomfortable to treat my bad skin.

Adam worries that using steroid cream on his face has damaged the skin.

I think cos I’ve, applying hydrocortisone to my face. So, and I’ve applied like very thinly steroids to my face. So sometimes what I do, I don’t even know if it makes a difference, after I’ve put it on my body, you’ve then got, like you’re covered in ointment on your hands. But it’s very thin. I then, will then kind of go, like brush over my face with it. You know, cos it’s not like slapping it on. And then hydrocortisone, I generally apply that just around my nose and here. And I feel like I’ve got stretch marks around my nose from where I’ve, from where, from where I’ve been applying it. I feel like I’ve got stretch marks, kind of tiny ones and stuff like that. And I think that is a risk of- that you get from applying strong steroids ointments.

Adam has tried various topical treatments. One steroid cream was very effective at clearing up his psoriasis.

He [the doctor] said, “Oh, like what about these patches on your face?” or something like that. And then he gave me like a tiny tube of ointment that he just kind of pulled off the shelf or something like that and, called, I think it’s Dermovate. Which I don’t think you can, actually should put on your face. But he said, “Well, use, like just put a bit of that on your face when you get home or something like that and see what happens.” And so I went home with it. And it was this tiny tube and I was able to get everything out of the tube and I put it all over my body. And I woke up the next morning and my psoriasis was gone. And I just, I just remember it being the happiest, kind of like one of the happiest days of my life. Cos all of a sudden like something worked. Again, things did work in the past and then they stopped working. Some of them worked again. And this ointment worked. And I’ve been on that ointment ever since. And it’s not as great now. I can put it on and it won’t be gone by tomorrow. But if I put it on, I probably put it on like now. So this is like, it’s been like two or three years since like this one was given to me.

Adam had a bad experience using a dithranol topical treatment when he didn’t follow the instructions.

I got this one that, and then I didn’t read the instructions on how to put it on. And basically I put it on, and then the instructions, like you’re meant to wash it off after 10 minutes. I don’t know what it’s called. I can’t remember. But I didn’t. I put it on and I went out for the day. And I came back and I had burns all over my body from having just put this, put this on myself. And, which made it all the worse, cos then I was just like devastated, kind of like that, and nothing was working.

Is that something that you then had to get more treatment for? Did you have to go to the hospital or GP or something?

No, I just had to basically, cos I went straight to the doctor and he was like, “holy shit” [laughs] or something like that. And like my skin wasn’t peeling or anything like that. It was just very raw and red almost, and just like having quite bad sunburn is what basically happened. And I just had to kind of like wait for it to go away and just had to moisturise. And I think it took about a month or six weeks to go down. I took pictures of it at the time. I’ve got them somewhere, yeah.

Did you use that treatment again afterwards?

No.

No?

No, never touched it.

Adam prefers T-Gel over other coal-tar shampoos.

So like coal tar is like the main ingredient in like the shampoos. There’s T-Gel, which doesn’t smell terrible. And then there’s the one that you tend to get prescribed to you. I don’t know. It’s in a brown bottle, in a brown tub. That smells horrendous. I don’t use that one, purely because I’d rather, it would cost me the same price to get a bottle of T-Gel by myself than it would to pay for a prescription. So I use T-Gel. I don’t particularly worry about the smell. I mean in terms of, I shower in the mornings and then I put it in. And you can use T-Gel like a normal shampoo. You can put it in, just like rub it in for like two minutes and then wash it all out. So I tend to, when I put it on, I tend to do it, it’s the first thing I do when I have a shower, I put it in. And I do everything else like I brush my teeth and then I do-. And then I leave it in, so it’s probably in my hair for about 15 minutes. And then I wash it out. 

And I don’t think it has a very strong smell. I know that if someone just came up to smelled my hair though after using it, they would smell the coal tar and something like that. But it’s not like the other one where it’s like, takes over the room or something like that. And, but then usually after I’ve showered then I get ready for the day, and then before I leave I put some product in my hair anyway. So I know that would mask it. So it’s not something I particularly worry about, purely because I have a routine. I probably, even if I went out with it afterwards, and I think T-Gel’s very good, so I wouldn’t be worried unless someone come up and like put their head in my hair, [laughs] or something like that. So, which never happens.

Adam talks about his experiences of having phototherapy.

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.

Adam found it a positive experience seeing others with psoriasis in the waiting room when he was having phototherapy treatment.

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. 

Adam’s phototherapy sessions were timed to fit around his lectures.

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. 

Adam declined phototherapy when he was first offered as he didn’t want to stop using topical steroids.

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. 

Adam’s face was once burnt from phototherapy, which drew unwanted attention.

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?” 

Adam says the emotional impact of psoriasis outweighed the physical aspects for him.

So for me the effect of psoriasis is purely, it’s purely emotional. So it’s not, I get no physical like, what’s the word for it? But I’m not inhibited physically or like I don’t get physical pain from psoriasis. I don’t get, like I’m not hurting or something, I can walk or something like that. So like things like psoriasis arthritis or things like plaque psoriasis that people are physically like in pain or they’re itching or they’re uncomfortable or they can’t walk or, or something like that and they’re in a wheelchair part of the time or can’t get upstairs. So like they’re like the real physical kind of impacts that psoriasis has on their life. Whereas for me with guttate psoriasis or the type I don’t know if it’s different for other people with guttate, but it’s purely emotional. So it’s stopped me from doing this, it’s stopped me from doing that. And it’s stopped me from kind of going into uni one day, it stopped me from sitting my exams. It’s stopped me from, it’s stopped me from going to work sometimes, all of those things. It’s stopped me from having relationships. That’s all purely emotional and I don’t think that’s kind of given enough consideration. 

Adam talks about his appearance, as affected by seeing his reflection and with different room lighting.

I used to have this really weird ritual that’s not healthy at all. I lived in this place, in this building for two years. It was, as you come down our stairs, we lived like above a shop, it was an estate agents or whatever it was, and you could see your reflection in the three window panes. And, and, and if I didn’t, I used to look at myself in those three window panes on my way, as I left for anything. And if once, if I got to the third window pane and I didn’t like what I saw in that reflection, I wouldn’t, I would just turn around and go back. And that was, it was rare that like I would do that. But I have done. And I used to just go back and be like, “Fuck it. I’m not going out. Like I’m not going u- in like this.”

Or like my ski-, I feel like my skin looks different in different lighting as well. I’m very pale anyway. So I don’t feel like I have good skin anyway. I feel like my skin’s very blotchy and stuff like that. So if I’m in like darker kind of mood lighting almost, then like I feel like my skin looks okay. But put me in like a hospital kind of light environment and I become incredibly conscious of how I look. And I could be out somewhere and go to the bathroom, and you’ve got a really bright light above the mirror in the bathroom, and just be confronted with how my skin looks. And I will leave that situation or leave that scenario and just go home because I can’t spend the rest of my day, feeling comfortable. I can’t, like then I’d pro-, and that will then that will then trigger me to go home and start treating my skin. Because I have to do something about, even though like nothing can be done. 

And it’s happened in my job at the moment. I’m allowed to work from home if I want as well. And I’ve only done it once. But one day I went to the doctor’s actually and it was to talk about my skin. And when I left the doctor’s I went to use the bathroom. And I was meant to go to work immediately from the doctor’s. And as I used it, again it’s like really bright lights and stuff like that, and I just saw my skin. And I physically couldn’t take myself to work. I just went home. I did all my work from home. That was fine. But I just couldn’t go in.

Adam came across scams online promising long-lasting ‘cures’ for psoriasis.

I’ve paid money to fraudsters online for like dietary advice, exercise, health advice. So, which didn’t, well, it was just an absolute scam. And I knew it was a, as I was doing it I knew it was a scam. I was just so desperate, kind of like that. So I’ve tried to change my diet. That’s about it really. What else have I seen online? Ah things like “buy this kind of smoothie making guide. And if you put like all of this and this and this and this, then just live off olive oil, you’ll be fine” or something like that. Like really there’s stupid things that I’ve seen, that people kind of are desperate, like people really are. Like I was desperate. Do you know what I mean? I was so close to falling for a lot of them.

But I paid for this booklet that had like a guide. I think I paid like 20 dollars and it was just a PDF that was sent to me. And, and it was just basically like, “Follow these steps and you won’t have psoriasis.” This guy who apparently had psoriasis posted on the forum his like cure for psoriasis and it was a dietary cure. And, and it was basically like, “If you eat just this for the next like 40-odd days or something like that, then your skin will go from here.” And this guy had very severe plaque psoriasis to here. And he had an after picture. I don’t know if you’ve, if you’ve come across any of them. And I was like, “Oh, my God.” And I started emailing this guy. And I don’t know whether, like I feel he may have been genuine, like that happened to him. And I don’t, cos it didn’t come across at all like a scam. Like to me, he was emailing me back like decently. Like, without kind of being like, “What’s your credit card details?” or anything like that.

Adam’s routine with topical treatments has been very time-consuming, requiring him to be at home for a long stretch of time.

It kind of sent me almost OCD about it. And I used to try, I mean which probably also wasn’t good for my skin at the time, but I was just desperate to be like proactive in kind of like getting rid of it.  That I would put one thing on in the morning, so I’d shower, and then I would drape myself in all the moisturisers, then I would put something on. Three hours later I would go and shower, drape myself [laughs] in all the moisturisers, put something new on. Then, and I would just do this throughout the day, different things. Like five times a day I would shower and then cover myself in, in, in [uh] the moisturisers. I used to go to bed having draped myself in moisturisers in the hope that like it would give my, my skin so much moisture or something like that, that I would wake up and it would be gone. I would wake up being like really slippery and soft, have a good shower. And I would just do this ritual.

Adam says he won’t have sex if his psoriasis is flared-up. He sometimes makes excuses about this to avoid explaining the real reasons.

So again like if my skin was bad I would have an, I would have sex with my partner. It didn’t matter how bad my skin was really. Sometimes it was bad and I didn’t want it then. But like in general it was fine with him. But if it was someone that was effectively like a one-night stand or someone that I kind of rarely had sex with, then I would not have sex with them unless my skin looked effectively normal. So I ju-, I remember there was this one guy who I, and in general I don’t think I ever like had a sexual partner comment on my skin. Because I never put myself in a position where it was noticeable. So, yeah, I’ve always kind of escaped that because I’ve intentionally, so if my skin’s bad for two weeks I don’t have sex for two weeks or something like that if my... And then, it would then, like if my skin then improved I would literally hit the town looking for a pull. Because I was like “I don’t know when it’s gonna like get bad again”. So I used to like, basically like my patterns of sex and how often I had sex was determined, like directly correlated with how my skin looked. 

So I would, yeah, I remember it would just be really bad and I just wouldn’t have sex. And then all of a sudden I had a really good skin, I’d be out in the gay bar every night for like four days. Because, and then I would try and pull as many people as possible because I was like, “Oh, my skin’s gonna fuck up again soon and I might not have sex for the next three weeks or a month” or something like that. So I used to do that. And then like, I’d like, sexual partners like that were more than once, say if I’d had sex with, had really good sex with, who would then ask me like at another random time like, “Oh, can I come over, [participant name removed]? Like we’ve had sex three times. Surely you want me to come over again.” Like, like I’d be so up for them coming over, but my skin would be bad and I would just say, “No.” Like I’d be like, “Oh, I’m like not that kind of guy any more” or something like that. I’d like think of all these excuses to kind of deny them like the right to come over. Although actually what I wanted was intimacy with someone at the time. So I never risked it. I never, because of I’m very conscious that if someone did make a comment on me, I don’t think I would be able to take it very well.

The emotional impact of his psoriasis affected Adam’s university studies.

And in those moments I’m like, “Why am I sitting here? Why am I even focusing on work? Because this really doesn’t matter. In the grand scheme of my life I hate my, I hate my body image.” So it used to really affect how I, like productive I was at university. I would have like weeks where I was like, completely stagnate and, and do barely any work because I felt so shit about how I looked. Then I’d have to make up for it in like the weeks where I felt really good. And then I’d have to really, really study really hard to do well. So to catch-up. Cos all of sudden I was like, “Oh, I look great. I feel great. Oh, life’s great. I wanna do great in my degree now.” And then it would be like, “Oh, I look shit. Oh fuck my degree.” And it then, it just was kind of an up-and-down kind of like situa-. And then I ended up doing well. But I could’ve kind of done well, been quite steady and been all right. But I did well having like done really shit, done really well, done really shit, done really well to make up for it. And that’s how I kind of ended up, like that’s how my degree carried for me. And it was directly linked, other things as well, but a lot of it was linked to, at different points, how I felt about my skin.

Adam has a different approach to trying treatments now that he pays for prescriptions.

I used to live in Scotland and I used to get it all free because, well, you get whatever, coal tar shampoo they have behind the, the chemist. And the chemist I went to, that’s what they had on offer. So I took my free prescriptions and then went “great”. They’d give me like £40 worth of T-Gel. And then, well, now I live in England I pay for my prescriptions. It’s like the same price to pay for coal tar shampoo as, with the prescription as it is to go buy it yourself. So I probably, I guess obviously I don’t use other shampoos, so I guess I don’t spend money on other shampoos. So it’s not so bad. Cos what I do, I, cos I don’t obviously like the smell of it in my hair, but I put like gel and wax on my hair afterwards, which is perfumed. So I know that the smell’s gonna go when I put that in. 

In terms of costs, it’s c-, again cos I’ve lived, with different healthcare systems. I used to I think be a lot more proactive about getting help in Scotland, getting different treatments and trying things out, because of, it was free. So I was a lot more open to that. Being in England, I’m a lot more cautious about kind of the financial costs of like prescriptions because obviously it all adds up and stuff like that. So the great thing about living in Scotland was that if I needed something, if it didn’t work, it was like, “well, it didn’t cost me any money” or something like that. So I was constantly able to get all my treatment for free. I wouldn’t say it’s like a massive financial burden on my life, but it’s a cost that I have to pay that someone without psoriasis doesn’t have to pay.

Adam encourages young people with psoriasis to consider different treatments and keep seeing medical professionals.

I think my advice is to kind of like take ownership of, like as much as you can take ownership of what you have in the sense that, especially like your biggest point of call would be, will be a GP. And you’re the one living with psoriasis, you’re the one who has it, you’re the one who knows what treatment works for you. And for you to weigh up the cost of, like the pros and cons of that treatment. So like an example being, do you know what I mean, for example some of the steroids that you shouldn’t be on for long periods of time. But if that steroid means, having that steroid means a lot to you, then f-, then fight your case. Because you might, you - the emotional effect is, are as important. So to take kind of ownership. To constantly to, you know to ask to see a dermatologist as often as possible. Cos they really are the people in the know and stuff like that, people that are kind of like advancing and stuff like that and know what’s happening. So I’ve not, I’ve not seen a dermatologist in about two years, no, like yeah, about two years now and stuff. So I don’t really know what, do you know what I mean, that something could have changed. There could be another bit, piece of treatment out there or something like that. Or a combination of treatments could work better or something like that, that I’m kind of out of the loop with. So I think see one as, like as soon as possible and as often as possible. That would probably be my advice.