Messages for other young people with psoriasis

Based on their experiences, the young people we talked to had tips for others living with psoriasis. The key messages for other young people with psoriasis were:

  • see a doctor and find out what help they can give

If you don’t feel your health professionals (like GPs or dermatologists) are doing enough to help or you don’t feel comfortable with them, be insistent or arrange to see another. Some people highlighted that you can ask your GP to refer you to see a dermatologist and also for emotional support.

  • try different treatments if your current ones aren’t helping

Adam thinks it’s important to be aware of the different prescribed treatments, such as emollients, steroid creams, phototherapy, systemic treatment (non-biological, biological), shop-bought products and alternative therapies. Abbie’s advice is to ‘be open’ to different treatment options but also ‘stand your ground’ in getting another if a treatment isn’t working. Sofia encourages others to follow the instructions and regularly use their treatments.

  • keep an eye on changes to your psoriasis

This way you can see if it starts to be more severe or develops on a new part of your body. Some suggested talking to your doctors and nurses if a treatment only gets psoriasis to a ‘stable’ but persistent level as they may have ideas to help adjust or combine treatments to be more effective.

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

Age at interview 22

Gender Male

Age at diagnosis 14

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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.

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

Age at interview 24

Gender Male

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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.

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This can include lifestyle factors (such as sleep, diet, alcohol and smoking) which Russell found had a ‘big impact’ on his skin. Stress is a major emotional trigger for a lot of people and can be difficult to avoid, but some people looked for ways to manage it. Keeping the skin cool, such as with a lighter duvet or having windows open, helped Louie and Louis.

  • be prepared for other people to be ignorant about psoriasis

Many found others made rude comments or asked questions (such as ‘is it contagious?’), because they didn’t know much about the skin condition. Steven encourages other young people with psoriasis to talk about it, rather than being afraid to do so. Megan takes pride in educating others, including her peers and teachers at school.

  • do some research about psoriasis, but don’t trust everything you read online

Looking online can be a good way to find out about the different treatment options too, which you can then talk to your doctor about. Hannah says ‘be cautious not to buy everything that you read about’ including alternative therapies and home remedies.

Louis says he made a ‘conscious effort’ to keep going out and socialising. Simon adds, ‘Don’t let it get the better of you’.

They said to be confident and not worry about what others might think or say, but understood this can be hard to do at times. Some found talking to people they trusted, such as family and close friends, helped. Many people found it reassuring that others often didn’t notice their psoriasis and they felt it was not as visible to others as they had assumed. Some people found it reassuring to know that they are not the only person with psoriasis and that it’s more common than they previously thought. Many found it useful to speak to others with psoriasis, including through psoriasis charities and support groups.

Lucy’s message to young people is to not let psoriasis hold you back.

Age at interview 24

Gender Female

Age at diagnosis 11

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And I always wanted to be an actress when I was younger. And that was difficult as well. I mean, I was in the National Youth Theatre so I did quite a lot of stuff, acting stuff. But I always thought I won’t really be an actress because of this, like, it will hold me back. You know, part of me thinks, ah, you know, would I be an actress now? But my ambitions changed and when I was at university I decided I didn’t wanna be an actress. But I think in terms of [microphone knock] sorry. In terms of young people thinking about what they want to do in the future, career wise, something like this can really hold them back. And it really shouldn’t. And it might seem like it has held me back, but my ambitions did change when I was at university and I decided I wouldn’t want to be an actress, because it would be difficult if I had a family, travelling around all the time and I’m quite a home bird and I wouldn’t wanna go down to London. So you know, that was my personal decision, but it’s, it’s so easy to let things like this hold you back from your ambitions and from what you want to do, especially young people. And when I was at, when I was a teacher, for a year, I just, I really really encouraged my pupils to be whatever they wanted to be, cos anything’s possible when you’re that age. And it, it’s exciting and you shouldn’t let anything like psoriasis, acne’s so common amongst young people, eczema. You shouldn’t let anything like that hold you back, because once you get older and once you get to my age, I think anything’s possible. Like if I want to be an actress, I might go to an open audition. You just, you can do whatever you want to do if you just go for it. You shouldn’t let anything hold you back and looking back now, I see myself and I see myself thinking, oh, I can’t do that, I can’t do that. And I wish I could speak to myself, you know what I mean? Or speak to young people now and say, You can. Like you shouldn’t let it hold you back, cos it’s such a shame if you do.

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Sofia encourages other young people to use their treatments regularly.

Age at interview 21

Gender Female

Age at diagnosis 4

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I would say it’s all right. You just have to cope with it and regularly use your treatments and eventually you would get used to them and just like follow the guidelines of the treatments. You should also not avoid using them, because the quicker you start using the treatments and following them like the quicker it would go away. Then it will be easier to control and will eventually go away or be kept to a minimum. You should also seek advice from support groups if you are having any problems.

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Hannah thinks there are particular mental health issues related to having a skin condition like psoriasis.

Age at interview 24

Gender Female

Age at diagnosis 16

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It’s definitely worth talking to a counsellor if you can and either going through your dermatologist and talking about the fact that you’d like some support or like looking for it independently if you don’t feel like you need someone who deals with specifically skin conditions. But I felt like it, that one session that I did have it was nice to speak to somebody in the hospital at the same time as going for an appointment. And somebody who I know deals specifically with skin conditions because I do feel like it’s a different kind of depression because it is linked so much to how-, to a condition and how you feel about yourself. And it’s not abstract like you don’t know why you are upset. You know why. And you, you have this root cause and it’s about dealing with something that you might have for the rest of your life and you probably will and you’ll probably be trying things for it forever and it’s about coping with that. And I think that it’s completely normal to find it hard to cope with the idea of having something forever. Even if it isn’t gonna to kill you, it’s still hard to cope with the idea of something might never go away fully. So it’s worth talking to someone.

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