Jack

Age at interview: 24

Age at diagnosis: 20

Brief Outline: (Audio or text only clips) Jack developed guttate psoriasis at age 20. He looked up the diagnosis online which was confirmed by a GP. Jack has felt self-conscious about psoriasis, though less so now that he older and has been prescribed a tacrolimus cream which works for him.

Background: Jack is 24 years old and works in retail. His ethnic background is White British.

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Jack first realised that he had guttate psoriasis when he looked up his symptoms online. He noticed some small red dots on his body during his first year at university. Jack felt relieved that it wasn’t another illness and the diagnosis of psoriasis was confirmed by a GP. Jack wasn’t too concerned at first as the psoriasis patches were very small and he hoped it would settle down. However, his psoriasis became more severe over time—tending to be itchy but not flaky—and the physical appearance had emotional impacts. His psoriasis almost entirely cleared up one summer when he was in the sun a lot. However, a few months later, the psoriasis returned and started affecting other parts of his body, such as legs and arms. Jack says it is difficult to pinpoint triggers for his psoriasis and he doesn’t think there is an obvious association with stress. He thinks though that there may be a link to him having strep throat on and off for several years which led to having his tonsils removed. He also knows about the ‘Koebner phenomena’, whereby psoriasis can develop at the site of an injury, and thinks that this may explain why some psoriasis has particularly affected parts of his face where he had acne as a teenager. 

Jack has seen several GPs about his psoriasis and tried lots of different creams and ointments. He has also bought emollients from over-the-counter and these, in combination with prescribed medicines, have been quite costly. The first GP prescribed him a steroid cream and Jack remembers being told that he needed to be careful with not using too much of this. However, it was tricky to apply to only the guttate patches and so he would cover blocks of skin at a time. The lifestyle Jack had at university meant that it was difficult to stick to a routine and he would often forget to apply creams. His psoriasis spread quite a lot, including onto his face which made him self-conscious when meeting new people. Jack has often felt unable to speak up to his doctors about the treatments being ineffective and would sometimes wait several months before making a new appointment. Recently, he was seen by a GP with a special interest in dermatology and has since started new treatments, including Protopic (tacrolimus), which are working well. Jack says he has more of a routine now with his job which helps in using treatments. 

Although Jack tried to not let psoriasis affect his social life, he used to feel self-conscious when meeting new people and would sometimes avoid social events. It was also difficult to motivate himself to go to lectures during university when his psoriasis was flared up. Jack feels better about his psoriasis now that he is working, has more time to come to terms with it and the new treatments are helping. He says that psoriasis doesn’t impact his job physically, but it can affect his mood and “set you up for a bad day sometimes”. Jack also has to be clean-shaven for his work which requires him to be careful not to cut the skin and the shaving cream can sometimes flare up his psoriasis. Jack has several tattoos, some of which he got since being diagnosed with psoriasis. He didn’t think initially about whether getting tattoos might make much of a difference until his most recent one developed psoriasis and took a long time to heal.

Jack hasn’t talked much to other people, including his family members or housemates, about the physical or emotional impacts psoriasis can have. He knows of online support forums but prefers to read rather than post. He says that it can be “therapeutic” to know that others are going through it too. He thinks that GPs should be more aware of the psychological impacts of psoriasis, though adds that he himself is now in a good place with this. Jack wishes that he had seen a doctor with more specialist knowledge sooner; he encourages other young people with psoriasis to be active and persevere in seeking help from healthcare professionals.

Before Jack was diagnosed with psoriasis, he found it reassuring to see photos online that looked like his symptoms.

Do you remember what you thought when you first started to get some small patches on your trunk of psoriasis?

Yeah, so my first thought was, was quite panicked to be honest. I think that most people when that kind of thing springs up you just think ‘why am I getting this? What is this? Is it like, you know, some sort of tropical disease that I’ve caught over the summer? Like is it cancer?’ you know, y- you just don’t know at all. But yeah, I think just looking up on the internet it was quite, it’s quite easy to tell, especially with like the guttate psoriasis, it’s quite easy to tell exactly what it is.

So that was that. What did find when you searched in the terms that you were looking for, that psoriasis was automatically the first thing that came up?

Yeah, pretty much, yeah. So it’s, it’s just so recognisable and there are pictures up on the internet now that straight away, you know, I could tell. Obviously, you know, I wasn’t a 100 percent sure until I’d been to the doctors. But yeah, I mean I was quite, quite certain, reasonably relieved.

Stress is a trigger for Jack, but not always and it can be difficult to work out what ‘set off’ his psoriasis.

But the problem with me is that most of the time it’s not necessarily stress that makes my psoriasis worse but if it’s like when it the one time it basically went and then sort of it came back with, with a vengeance was, was sort of a two-week period when I was really-, well I was really stressed. But then once it’s sort of come back to a certain level, I found there’s not really much that causes it to-, especially the last six months when it’s sort of been spreading enough, I’ve been fine, it’s been difficult to pinpoint, pinpoint anything really that’s sort of caused it to do that.

Jack had psoriasis develop on tattoos. He also had acne as a teenager and thinks this is why psoriasis developed on the same parts of his face.

There’s a good chance that because psoriasis can impact like really damaged skin, skin, so, is it Koebner phenomenon, Koebner? Something like that. So where you get like-, I’ve even got bits there, so sometimes when you get like a cut or whatever and that’s the same as like getting psoriasis on a tattoo so because of your damaged skin impacts like skin cycles and stuff. So that was sort of my original thought was that my cheeks obviously, a fair bit of my face obviously when I had acne as a teenager, obviously your skin takes quite a lot of just general wear and tear from that. And I think that could definitely be linked to then getting psoriasis in the same areas. 

Jack had mixed experiences with GPs but is pleased his current one has a special interest in skin.

Altogether about my psoriasis I think I’ve seen maybe six or seven doctors, different doctors. But this doctor’s is a special-, is obviously a specialist who knows what he’s talking about and in a way it was quite reassuring to go in and he basically just said, “Right, you know, the things you’ve been prescribed just wouldn’t do anything. I’m not, I’m not surprised.” You know, he just said, “Right, I give you-, I’ve got the Protopic,” which he just said, you know, “This, this will do it. This was, this will, you know, help control it.” And Dovobet as well, I’ve got. But it was reassuring just being with someone who obviously sort of really knows what they’re talking about. I think because of the side-effects or possible side-effects and strength of steroid cream, I think previous doctors probably were a bit cautious about, about prescribing them, especially-. So one of the first doctors, I’ve seen so many doctors [laughs] over the last few years, but one of the first doctors I saw when I was back at home was I believe a junior doctor, so I think, I think she was possibly even, even younger than me when I saw her, so is, it was quite understandable actually that she didn’t wanna prescribe anything strong. And I think she even, she looked-, she had to look it up in some sort of handbook about, you know, what creams she could prescribe and that kind of thing. But yeah, I guess I probably would’ve appreciated seeing someone a bit earlier but I think I’m not a very forceful person so I probably, yeah, I’m not the kind of person to say, “Can I see a dermatologist please?” Even though it was quite a struggle. 

Jack wishes he had played a bigger role in choosing treatments and going back for another if it wasn’t working.

I think it probably goes back to just sort of taking every doctor’s sort of word as, as it is so I just ended having so many doctor’s appointments and I’m quite accepting of like if a doctors says something, I’ll be like, you know, “That’s, that’s brilliant,” but I probably should’ve taken more on board of what I’ve read, seen someone who knows what they’re talking about and said, “This is what I think,” you know, rather than going in and saying, you know, “So, I’ve got this psoriasis, help me doctor,” sort of thing where the doctor often either don’t-, aren’t 100 percent sure what they’re doing or prescribing me things that don’t really work. I’m also the kind of person that I don’t necessarily feel not comfortable doing it but I wouldn’t book a doctor’s appointment then like a week later. You know, unless I was asked to come back. So even though, even when sometimes I had a cream that didn’t work, I still ended up waiting six months or whatever before coming back whereas it’s best to just attack it straight on. 

Jack finds it easier to have a routine with using topical treatments since finishing university and starting a job.

And what was that cream like to use, the first steroid one?

Yeah, it was mixed. I think, partly at the time because I was in my first year at university so my life was kinda [laughs] kind of revolved around doing student sort of things, like socialising and that kind of thing. I probably sort of half-ignored it and half would spend a few days applying it and then sort of give up or forget and or that kind of thing, so-. It’s, it was difficult to say how much [laugh] really of an effect it had.

I think it probably didn’t help, the fact that I didn’t have, have any routine and was going, going out a lot and things like that so I kind of didn’t really care, if that makes sense, too much about, about my skin. But now, obviously, I’m cos I’m working, I think it’s more, I get home every day at a certain time. But yeah, especially well, what I’m using at the moment is, is quite strong so I do only mean to put it on once a day so it’s easy really to be honest. Just put a bit on before I go to bed and that’s, yeah, I think it’s not too difficult I think when you do have that routine in your day already.

Jack has noticed an improvement since being prescribed Protopic (tacrolimus) by his GP with a special interest in skin conditions.

[Protopic] works with like the skin cycles and stuff, if I use it two or three days before I have something that, I don’t know, I want my skin to be reasonably clear for – then that sort of works, if that makes sense. So I guess most of what I’m doing at the moment is just trying to pinpoint a few days where it’s like ‘ah, okay, yeah. I kind of want my skin to look alright’. And so I’ll just use the cream once a night for a few days before. And then it’s normally, yeah, it’s been for like up to like five, five days to a week at a time with that. So you know that’s not bad at all considering before I got this cream, I had I don’t know maybe six months of it being basically a constant sort of presence on my face so it’s been nice recently having days where I just don’t even think about it because it’s basically not-. It probably is still noticeable but for me anyway at times at the moment it’s like, it’s, you know, I have normal skin, which is lovely.

Jack talks about positive impacts of psoriasis on his outlook.

I think when you have to like accept all of the flaws in yourself and then it does make you a bit stronger, I think, which is something that-. You know, I mean I’m here giving an interview with you guys-, you know, you about this, which is-, I’ve not spoken to anyone for more than about a minute about my psoriasis. So to come and sort of even do something like this and to be able to sort of say in my head that, you know, ‘it doesn’t define me, it doesn’t, it’s really like not a big deal’ and to be able to sort of move on with my life I guess is something. It’s probably made me a bit stronger, maybe.

Jack was recommended Dead Sea salts by a customer at work, but hasn’t noticed any improvements in his psoriasis.

I have also used some Dead Sea salt scrubs and stuff, which I haven’t really noticed much of a difference but they are supposed to be supposed to be useful.

Is that, so is that something you’ve found in the shops or is that something you were prescribed, the sea salt scrubs?

It’s something, yeah, I, yeah I bought online but it’s actually something someone came into my work and just said, “Oh, got psoriasis, haven’t you?” Like, “Yeah, yeah [laughs]. Thanks for noticing,” like. And he just said, “Yeah, you know, I’ve had it before,” and he just used Dead Sea salt, I think he mixed it some E45 and he just said, “Yeah, cleared it right up.” So got home, was like ‘right, I’m gonna, gonna find some of that and see if that, see if it works’.

When Jack’s psoriasis is more severe he finds it helpful to look online at the Psoriasis Association website, NHS websites and Twitter.

Yeah, so mostly sort of health website-, well I guess NHS website. Couple of other like sort of diagnostic websites, is that the right, the right kind of phrase? 

And then also the, is it The Psoriasis Association? I think website as well that has all the forms and stuff and that’s where you can see like ‘okay, this is what other people are sort of, they’re going through as well’ and people are going on there talking about, “Oh my goodness, this has come up on my arms,” as well and stuff like that. And you’re like, ‘yeah, you know, this is happening to other people as well’.

Do you ever post on those forums yourself?

Nah, I don’t, I’m not-. I’ve never really been on-, been that kind of person with [laughs] sort of contributing to forums. I’m more the kind of person that go on and read bits other people have, have written.

Does that tend to be sort of practical information or is it also sort of the more emotional support, if there is an emotional side to you for psoriasis? 

Yeah, yeah, it sometimes is I guess, yeah. It sometimes is. Sometimes it’s, that’s actually how I, how I came across this. Sometimes I’ll just type it into Twitter and see what people are saying and you just get the, these amazing short little things of someone being like, you know, “My bloody psoriasis is flaring up again [rarara],” I’m just like ‘yeah, these people are going through the same thing,’ you know. Yeah so, in a way, it’s, it is quite therapeutic but yeah, I guess I don’t do it all that often but sometimes when it is, it’s quite bad, I do.