Simon

Age at interview: 22

Age at diagnosis: 17

Brief Outline: Simon has had psoriasis since age 17. Having a skin condition has negatively affected his mental health and employment in the past. Simon’s confidence has grown recently and he encourages young people with psoriasis to worry less about what others think.

Background: Simon is 22 years old and a catering assistant. His ethnic background is White British.

More about me...

Simon first noticed psoriasis on his scalp when he was 17. He visited his GP when he realised that the patch had grown bigger. He was given T-Gel shampoo but the patch continued to grow, became itchier and appeared on his forehead. More recently, he has also developed psoriasis patches on his back, arms, armpits and legs. Psoriasis also affects Simon’s nails. This is particularly difficult to treat but Simon finds that it seems to help when the scalp treatments end up on his hands. Simon has found a number of factors make his psoriasis worse, such as stress, hot weather, injuries to the skin/nails and clothes rubbing on the skin. When he was first diagnosed with psoriasis, Simon didn’t think to look online for other's experiences because he didn’t realise how common it is until he met some other people who also have psoriasis.

The treatments Simon currently uses are Capasal, Sebco, Betnovate, Dovabet, and Dovonex. He doesn’t use a moisturiser at the moment as he finds that the psoriasis treatments keep his skin hydrated. Simon feels that he was poorly informed about treatments by doctors initially and it took a while for him to realise that psoriasis is a long-term condition. For example, his doctors weren’t clear about what they meant when saying that the medications would “help” and Simon initially thought these were cures to stop psoriasis. Simon’s advice to healthcare professionals is to prescribe the most effective medicines as soon as possible; in particular, Simon recommends Capasal and Dovabet as he has found these to be most useful in managing his skin.

Simon notes that the appearance of psoriasis (welts, sores, scabs, flakes) can be very difficult to cope with, especially on the scalp and face. The medications can also knock confidence, as they tend to be foul smelling and greasy. Simon found school/sixth form difficult because some peers would make insensitive comments. He says that romantic relationships can also be tricky because of the impact psoriasis can have on confidence. Psoriasis has contributed to Simon developing depression, something which his GP referred him to a therapist for. Psoriasis has also had financial impacts for Simon; he found it difficult to find a job and thinks that having psoriasis may have been off-putting for some employers. He was on Job Seekers’ Allowance for several years and money was very tight, even with prescription costs waivered. He currently works in catering and worries about skin flaking near food, but his manager has been helpful and allows him to wear long sleeves. The shift work hours can make treatment routines tricky though.

Simon is now more confident and less worried about what other people think of him. He says that psoriasis is just a part of him and he doesn’t want to be defined by it. His advice to other young people is to visit their doctor as soon as possible if they find a psoriasis patch. He adds that psoriasis is often not as noticeable to others as it is to you and implores, “Don’t let it define your entire social life”.

Simon talks about itchiness and the impact of scratching on his psoriasis.

Sometimes for me you don’t really notice it very much. It’s when untreated areas they start to itch after a while because the skin condition, the skin’s basically reproducing and you basically start itching at it, and you keep scratching and, you know, that’s when it starts to get sore.

But the thing is, with scratches, I think the best way to put it is when you have a certain itch and scratch it and it feels good, and you keep scratching and the next thing you know, oh no, you’re bleeding [laughs].

Yeah.

I realised that does sound a bit weird but it is like scratching an itch basically. You feel it, and you scratch it and it feels better and you just go back to doing it. And then the only consequences you really notice like five days later when you notice that it’s spread out just a little bit more. 

What do you do about that, do you sort of try to avoid the scratching if you can?

Yeah. I just really try to distract myself from it. Like it’s itching in about two places right now because of the psoriasis and right now this interview is just helping keep my mind off it because if I keep talking then it’s gonna help me. 

Simon learnt from his mum that psoriasis is often a long-term condition.

So had doctors sort of explained that it was something that tends to stay with people for life or …?

Well, it wasn’t the doctors that actually mentioned that, it was actually my mother because she used to work in a medical centre herself in the 90s, so she did have a bit of experience when it came to medical conditions and she was quite familiar with psoriasis. While she never had it she knew patients who did, so if anything she was the one who told about, yes psoriasis was chronic. It isn’t short term.

And if anything she did suggest it when I first had it that, yes, it was psoriasis.

Simon’s nails are affected by psoriasis. He thinks applying the steroid ointments to his scalp helps his fingernails a bit.

At first it started off on this finger here, my ring finger I believe. It I remember banging the fingertip really badly, again that’s just on a surface when I was moving, and I didn’t think anything of it but then it started to bruise. And I thought that was normal. But then two weeks later it started to turn into this sort of sickly almost like ivory white colour on the tips of my nails, like you can see, and it started to spread until it was about half. Now, it has gone down a little and I think that’s down to the shampoo that I use, Capasal, rubbing off into the, beneath the fingernails.

It started to spread really badly on my hands, sometimes it’s disappeared, other times it isn’t as good, especially here where it’s on a, it’s absolute worst, it’s pretty much covering the entire fingernail at this point. And especially on this finger here you can see that’s starting to really spread because it still has that ivory colour. I think, I believe it’s called epidural, epidermal, epidermal psoriasis. And it is essentially the same condition that it is on the scalp. Unfortunately, because of how it is, being underneath the cuticles there’s nothing really that can be done about it I mean you can try and fish some of it out but it’s gonna keep coming back. Because that’s just how it is. It’s psoriasis. 

Simon talks about the parts of his body where he’s had psoriasis.

It did start on my head and I remember it was on the back of my head right here and it sort of spread. Now it’s covered up about a third of my scalp and about half of my forehead. The first affected spots on my face and I’ll show you one it started breaking out last year on my arm and it used to be that big [demonstrates 10p size area] when it started to break out. So it started off there and just around January this year it started to appear on my back in little patches, about as big as a 10p coin. And also I’ve got, started to get them on my legs. Got one on the inside of my knee and my calf and on the, on my outer thigh. It spreads and it’s gonna keep spreading. Psoriasis is a chronic thing.

Simon finds it difficult to cover up psoriasis on the scalp and face. Different aspects of his life have been affected by feeling self-conscious.

I think the self-esteem has really come, comes from a, from the psoriasis itself. Especially when it comes to scalp because at the end of the day you can cover your arm up, you can cover your back up, you can cover almost every other parts of your body, but on your face and your scalp it’s not really as possible even if you wear a hood because at the end of the day it will still flake out and especially when I was a teenager, I used to wear a lot of dark clothes, so if the skin would flake really bad and it would fall onto your clothes it would look like a seriously bad case of dandruff. And especially when you’re going through sixth form at school where everyone is in sort of a hormone stage where everyone’s got their own cliques and so on and so forth, you do become, feel like an easy target because of your skin condition. It almost makes me, you feel like an outcast. There’s also other problems like if you’re going out like to have a drink with friends or if you’re even just meeting someone for a date or whatever you do think, “Oh, what am I going to do about my psoriasis? Will people think I look like a leper or something?” It’s really stressful to really think about, but which it does end up giving you sort of a really nasty cycle to live through because you don’t want the psoriasis so you do try to keep your stress down, but then like – it’s there. It, it’s sort of hard for me to explain but it’s there, you, everyone can see it clear as day. Some people might think that it looks like a burn. And which you can come up with some excuses it doesn’t really work when it starts getting into, into, onto a table or so on and it becomes really, really nasty to look at. 

Simon hopes to see a dermatologist in the future but doesn’t know what to expect.

I’m not sure entirely what I’ll get [sighs]. The GP mainly said he’ll try and set up an appointment for me to see a dermatologist locally. And I would imagine what, going through it, what we’ll end up discussing are the effects of psoriasis and how, and the different methods that can be taken in order to help treat the psoriasis. 

Yeah. Is that something that you there are other treatments that your GP can’t prescribe you that you hope the dermatologist might?

I have had heard things through the grapevine through friends that you can, which is a steroids, and you inject them straight into the psoriasis and it’s supposed to clear it right up. Now, steroids are a big part of psoriasis treatment. Like, for example, Dovabet and Betnovate, they both have  quite a few steroids which means that essentially you can only put them in very certain parts of the skin. Otherwise what happens is that skin will start to thin out. So it means that you have to be very careful about what you’re applying, and where you’re applying it, even if it looks like that it’s working. 

Simon gives an overview of his current routine for treating psoriasis with topical medicines.

When I have a shower I use Capasal. The doctor mentions, and when I’ve had it that you have it pretty much twice every shower session so you put it on and you rinse it off and about 10 minutes later or five minutes you put it back on and you rinse it off again and that’s fine. And when you get out and you first of all you use Sebco and you use that for you put that on and you can leave it on your scalp for about an hour, two hours at the most, and then you wash that off and then you move on to Betnovate. Now Betnovate isn’t as bad, of course there’s still that horrible smell of gasoline, so you do sort of smell that but you put that on and you, it’s basically it’s something you leave on until the next time you shower. And then after that for a, for my forehead I used Dovabet. Dovabet is another steroid based ointment. You put that on. It’s very greasy but it starts to calm down within about three to four hours. 

Simon has a routine for his scalp psoriasis treatments, including using medicated shampoo.

When I have a shower I use Capasal. The doctor mentions, and when I’ve had it that you have it pretty much twice every shower session so you put it on and you rinse it off and about 10 minutes later or five minutes you put it back on and you rinse it off again and that’s fine. And when you get out and you first of all you use Sebco and you use that for you put that on and you can leave it on your scalp for about an hour, two hours at the most, and then you wash that off and then you move on to Betnovate.

Simon prefers not to talk about psoriasis and focus on other things.

I don’t really like complaining about my psoriasis to friends and family anyway because I don’t feel like it should be very much of a problem and plus it comes across a bit whiney. I think the only reason why I would complain is when I just, when it just gets to me. Because there are those days when you could be doing something and your arm can start itching for example and you could start scratching and then you’ll notice just how sore it is and you’ll wish, I wish that I didn’t have this. And then if you’re not careful then that can start snowballing into something like  you know, ‘I wish I didn’t have this, I wish I could just cut it off and be done with it, [uh] I wish weren’t born with this altogether, why me?’ And you do start to really think about these things that’s when you have to be really worried about how it can affect you. 

What do you sort of do in those situations to stop it from snowballing, snowballing with those kind of thoughts?

The only thing I guess I really did with it was just immediately, to, just to try to think about something else, like I’d focus on doing my homework even more for example I’d literally just do whatever I can to take my mind and my eyes off it. Because as the old saying goes, ‘out of sight, out of mind’. And it worked, especially in this case because as soon as I stopped noticing it then it’s more or less back to normal. Relatively. 

Simon’s new catering uniform will cover more of his psoriasis.

As a catering assistant we have the section where people go up to be served, it’s called a servery, and the, essentially big plates of food we’ve basically plated it up and you give, put in on a plate and give it to them. Now with psoriasis you’ve, you it becomes a bit of a dilemma because you have to wear short sleeved shirts. You also have to wear a very specific form of hat. Now, the skull caps can kind of cover up the psoriasis. However, on the negative side they end up rubbing against your forehead and that’s exacerbating the problem because of your sweat. And the compromise that I have reached with my manager is, simply put, he’ll basically think of some alternative clothes that I can wear instead of a short sleeve shirt and skull cap and, very simply, that’ll basically, oh, I’m sorry, it will, it helps if it means that you, it gets covered the scalp gets covered up and everyone’s happy. You’ll be able to fully do your job.