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Psoriasis (young people)

Impacts of psoriasis on exercise, social life and hobbies

Psoriasis can impact on exercise, socialising and hobbies in ways such as:
  • symptoms stopping people taking part in sports or other activities
  • avoiding activities which might irritate/trigger the skin
  • not wanting to go out because of feeling self-conscious
  • finding time to fit in treatments around hobbies as well as other activities like studies and/or work
  • being unable to do things because of side effects, like nausea and headaches with some systemic non-biological medicines
  • the cost of prescribed treatments and shop-bought products meaning people couldn’t afford to spend money on social activities
Some people felt they needed to cancel social activities when their psoriasis flared-up, was on visible parts of their body or if they felt low about it. Yet, many people tried to limit how much psoriasis affected their social life and the activities they enjoy. Simon’s advice is don’t “start excluding yourself from social situations”. Some pointed out that activities like yoga can help them relax and worry less about their psoriasis, which might reduce flare-ups. Lola doesn’t like exercise but says “even just going for a walk, I feel so much better afterwards”. Louie goes to football matches as it helps him ‘forget’ about his psoriasis when he’s enjoying spending time with other people.
 

Hannah talks about how the emotional impacts of psoriasis affected her friendships and social life, including dropping out of plans.

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Age at interview: 24
Sex: Female
Age at diagnosis: 16
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In terms of activities it's like, like the gym and things like that, like it's kind of the same as like social-, socialising would be, so like I just wouldn't want to-, when it was bad I just wouldn't want to go out. So that would include like doing any kind of activities. I'd like, like if I was gonna exercise, even though I hardly do, it would be like by myself. I'd rather kind of be by myself. And I could see, I could feel myself wanting to cancel things all the time. So I'd kind of like work myself up and be like, ‘ok I'm gonna go to this’ and be really confident about it on the day before and then on the day just be like ‘I'm not going. Anyway my skin's not, I'd, my skin looks awful, I'm not going. I don't have the energy to spend three hours trying to make it look fine, to put make-up on everything, to find something to wear’. Like you know, I would just back out all the time. And I could feel people kind of be disappointed and because I didn't want to tell them what was happening, you know, I just sort of just looked like I was kind of like flaking on everything. So yeah, it did, it did affect me badly. It's been better since I've kind of been honest about it. And I weirdly felt like I could only be honest about it when it was kind of better, so that it looked like it was sort of in the past. Like I sort of, I didn't wanna show people it at it's worse and sort of have that look of like shock and disgust. So when it got a bit better, then I would talk about it and be like, “Oh I'm on medication because my psoriasis used to be really bad” and, you know, I felt more confident talking about it when it was behind me. It's really hard when it's at it's worse to just be open about it and just be like, “This is what I have.” Because like you, you just hate it so much, you can't imagine that anyone else would feel any differently to the way you do. And it's hard to see it from an outside perspective. And I think, you know, everyone in my life has been like absolutely like great with it, and like interested in like talking about it, and the medications. And then you tend to find out lots of people have other problems and skin conditions and things that they're dealing with that you just sort of didn't realise. And I have been really grateful that it hasn't been on my face, cos I look at a lot of my friends who like suffer from acne and I do feel like, you know, at least I could like hide it. It's so much so much more difficult to hide you know the area that everybody sees first. And you like can try so hard to hide that, but it's much more difficult.
Exercise and sport

Some people said psoriasis affected their ability to take part in exercise and sports. Activities which trigger or irritate the condition were often avoided. Zara worried about picking up an infection on her feet when going swimming or walking. She had to give up a lot of sports which put pressure on her feet. Other people changed their sport to one that had less effect on their psoriasis.

Swimming was often talked about. Chlorine in the pool water irritated some people’s psoriasis, though not for Louis. Megan finds that chlorine water hurts but thinks it “kills all the bacteria”. Steven says salt water helps his skin.
 

Louis stopped playing rugby when he had psoriasis and took up swimming instead.

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Age at interview: 21
Sex: Male
Age at diagnosis: 18
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So I was playing quite a lot of rugby before it happened, and that was a big no [laugh] because obviously that would-, that would make it really, really sore. So I couldn't do any of that. I did quite a lot of swimming, because I sort of checked with the GP and apparently I wasn't gonna to put anything in the water that was going to be bad for anyone else. So I did quite a lot of swimming, which was again really soothing. So it meant that I could go and do something to take me mind off it and get some exercise without it being sore. And I was but initially a bit worried about the chlorine irritating it, but the chlorine seemed to be alright. And again I just made sure I had some emollient on and I was okay. But yeah, it meant that I couldn't play rugby at all. And I had to be careful with sort of pretty much everything else, just to try and sort of stop aggravating it as much as possible.
 

Zara enjoys sports but is limited by having psoriasis on her feet.

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Age at interview: 16
Sex: Female
Age at diagnosis: 2
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If I was given the opportunity I’d like to be, play badminton for England or something but I kind of gave up on that because I would have to spend all day, I don’t know, six hours on my feet training and I just wouldn’t be able to do it just, it just I’m not sure they’d cope. I mean just doing a day of sort can put so much pressure on them like do a cricket tournament or something and the next day they’d barely be able to walk so.

And were there other forms of sport that you found easier to do or enjoyable?

I always struggled with football because I didn’t have any nails so kicking the ball when taking a shot or something I found, it found it quite difficult and very painful so eventually I did give that up. cricket is easier I think than badminton because its, you get a rest period so if you’re fielding the ball isn’t always at you and you're bowling I mean if a bowl is speed a fast bowl then it’s more difficult but a spin ball’s not too bad because I’m not putting so much pressure on my feet. Yeh it was just that, that rest period made it easier although I can’t, I do struggle to stand still for a long period of time.

Right.

Just my feet ache and then I start, I kind of start walking about and they still ache and I just get fidgety and get itchy and, you know something’s happening and they’re getting bad and you can’t do anything about it.
Feeling self-conscious about others seeing their psoriasis was another factor which put some people off sports or exercise. Zara found it “awkward” swimming and going to the beach because she felt people would stare. Louie was a competitive swimmer but stopped because “I was embarrassed getting in the swimming pool with my skin condition”. He wore a vest when swimming for a while to cover his torso but found it drew attention as he “stood out”. Lots of people talked about this being the case for Physical Education (PE) classes in school. Megan used to change in a separate room or toilet because she was worried that people would see her skin. At school swimming lessons, Lucy and Ella prefer to wear one piece swimming costumes rather than bikinis.
 

Lisa thinks there’s a lack of understanding about psoriasis, which adds to the emotional impact. She had a bad experience at a swimming pool.

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Age at interview: 20
Sex: Female
Age at diagnosis: 11
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Can you remember when that sort of impact on self-confidence started for you?

Probably when I started secondary school. Although my friends were they, they knew, cos they, they’d known me for a while. They didn’t really mind. Cos they just looked past it. But I sort of never liked to get changed in front of them for PE and the-, I don’t think the PE teachers quite understood so they were just like, “Yeah, everyone’s gotta get changed in one place.” And especially when I went swimming in primary school and secondary school, they- I didn’t feel like I wanted to do it. So often I would write notes saying, “My mum said that I can’t do it today.” And try and get out of it that way. 

Did that work or-?

Yeah, most of the time. But it meant that I couldn’t swim, so yeah. And then I tried to learn how to swim when I got a bit older. But then, you’d go to a swimming pool with a swimming costume and all of your skin would be showing pretty much. And then, you’d have the lifeguards come up to you and be like, “Are you safe to go in the water?” So, it’s just like ‘why bother?’ 

How would you deal with that situation if somebody like the lifeguard asked you that?

I just tried explaining, cos I was with my dad anyway, so he helped explain that it was safe. It’s not contagious. Cos I don’t think people know that it’s not contagious. 
Socialising, hobbies and having fun

Psoriasis can affect many leisure activities, including hobbies and socialising with friends and family such as: going out (to clubs and bars); concerts; walks; drawing/painting; volunteering with a youth group; theatre/acting; dance; army cadets; going to football matches; creative writing; and travelling/going on holiday.

As with exercise and sport, sometimes psoriasis symptoms made it physically uncomfortable or tricky to do some activities. Lucy says she would be self-conscious about taking part in a food workshop because of skin flaking. Some activities involve several triggers combining, such as nights out which might include going to warm clubs, becoming sweaty with dancing and drinking alcohol. Russell cuts out bread from his diet to help his psoriasis, but finds it difficult to resist when he gets home after a night out and wants a toastie. Lucy couldn’t drink alcohol whilst taking methotrexate which affected her social life at university. When her psoriasis was particularly bad one summer, Megan didn’t want to play outside because she worried about damaging her skin and triggering more psoriasis plaques to develop.

In other situations, social activities and hobbies were affected because the person’s confidence was knocked by psoriasis. Damini found it hard to make eye contact when she felt self-conscious about psoriasis on her face. Simon thinks there are times when he seems “distant and aloof” because he’s been worrying about his appearance.
 

Lucy says her psoriasis sometimes negatively impacts her social life.

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Age at interview: 24
Sex: Female
Age at diagnosis: 11
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I mean, sometimes I’ll think my skin’s really bad. I don’t wanna go out. I just don’t wanna go out and if it’s a friend’s birthday or something, it’s awful, cos I wanna go out to celebrate their birthday, but then I’ll think I’ll look horrible. Like I don’t wanna go out, cos I don’t look very nice. But then, other times, other times I’ll think, like if I don’t have a fringe, if my fringe is growing out and my skin’s really bad, I won’t, yeah, I won’t go out. But like I say, it’s easy to be like that and it’s easy to not go out and I really, really try hard to go out, even when I’m not feeling like it. Because I don’t want to get into that habit. I don’t want to get into that habit of feeling sorry for myself and staying in and not going out. But sometimes it is difficult, cos sometimes, even with all the make-up. Sometimes make-up makes it look worse, cos it’s so dry and I put make-up on top of it and, ah, it just looks awful. So it can be difficult going out and deciding what to wear as well. If I’ve got loads of flakes of skin on my shoulder, which is why a lot of my clothes are bright colours or white or pale. So, sometimes, yeah, it does affect me going out, yeah. And it’s, I mean, it can be upsetting for my boyfriend, cos I can remember once, he said that he’d take me out for dinner and I didn’t want to go out, cos I just looked so bad. And it’s a shame, cos I, I mean I did end up going out and we had a lovely time, but it’s a shame cos it affects other people as well and it shouldn’t. 
Choosing clothes for going out and special occasions was a concern for lots of the young women. They wanted to be able to dress up like their friends but sometimes found fabrics uncomfortable or were self-conscious about others seeing their psoriasis. Carys felt “frumpy” wearing clothes to cover up her psoriasis. Abbie asked for a longer bridesmaid dress to cover her legs when her sister was getting married. A few said being unable to shave their legs because of psoriasis also affected their choice of clothes. Zara felt “less feminine” when she didn’t want to wear open-toed shoes to her school disco with psoriasis on her feet and missing toe nails.

Going out to socialise can require planning ahead. This includes finding time to do topical treatments and, for some, to apply make-up to the face and/or body. Some said they had to wait for creams they used daily to absorb. Others planned to their treatments a few days/weeks in advance of a big social event. Some people said social activities disrupted their routines and so they would forget or hold off from doing topical treatments.
 

Hannah didn’t tell her friends about having psoriasis for several years. She tried to keep her psoriasis hidden while at university, which meant it took her longer to get ready before going out.

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Age at interview: 24
Sex: Female
Age at diagnosis: 16
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Like it took me a long time to admit to my friends that I had psoriasis. Like if I got it at16 I probably didn't tell people till like 21. And I, when I graduated from university like I was probably more confident and started to care less and less about kind of like what people thought and the sort of social side of it. And I was kind of over the stage of my life where I was going out all the time and like, you know, I kind of moved back home and then did start to tell people. But yeah, so for so long I wanted to kind of like keep it this secret, so that when I was out, it didn't sort of exist and it wasn't part of my life. And I got quite good at hiding it, so when I did tell people, like most people didn't know that that was even happening, so.

How did you feel about that sort of hiding it and not being able to speak to anybody about it?

Yeah it was, it was difficult and it was frustrating like I said earlier about having to spend so much longer getting ready. Those kind of things frustrated me because you want, you, there was no like spontaneity. You couldn't just decide ‘I'm gonna go out and I'm gonna see this person’. You had to really think about it, you had to really think about what you were gonna wear. Because I was still in that stage where I didn't want anyone to know that I had it, so I had to work really hard to make it look like I didn't have it. So you're kind of in that cycle where-, if I'd been honest maybe I wouldn't have had to spend so long getting ready because it, you know, if you could see a bit it wouldn't matter. But it, it's just one of those things of a skin condition where you just, you find it unattractive and you're always going to find it unattractive. You're never gonna wake up one day and think ‘psoriasis actually looks really great’. Like you're always gonna find it unattractive and want to kind of, like suppress it as much as possible so that people don't notice.
For some people, having photographs taken at social events and seeing these on social media added to their concerns about having psoriasis (see also about friendships and emotions). Adam and Damini don’t take or send ‘selfies’ as much when their psoriasis is visible. Simon finds certain angles make his psoriasis more visible and Adam says the flash “brings out” the redness in his skin. A few people said they sometimes edit photos to reduce the visibility of psoriasis.

Psoriasis affected holidays and trips away for some people. Many thought holidays to warm and sunny climates helped their psoriasis clear up. Some people had visited famous water sites like the Dead Sea and Lourdes. Damini saw an alternative therapy practitioner when visiting family in India. Zara and Steven said they were less self-conscious when on holiday because “these people aren’t really going to see me again”. Going on holiday with friends could be a worry though – Hannah didn’t want her friends to see her skin in a swimming costume. Sofia mentioned about taking psoriasis treatments abroad (such as steroid creams), for which there are restrictions on flights about carrying liquids/creams and medication. Lisa lived abroad for six months and wasn’t able to continue systemic non-biological medicines without regular blood tests. People on biological injections for psoriasis can’t have live vaccines which are important when travelling to some parts of the world.
 

Steven talks about his visit to the Dead Sea.

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Age at interview: 22
Sex: Male
Age at diagnosis: 14
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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. 
 

Hannah can’t have live vaccines whilst on biological injections, impacting on where she can travel in the world.

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Age at interview: 24
Sex: Female
Age at diagnosis: 16
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Travel is something I've only sort of started thinking about now because it's only on biologics where you can't have live vaccines. And I only started Stelara in December, I hadn't had any plans to go traveling until now and I want to go away to South America. But some areas you need the yellow fever vaccination which is live so there was some restrictions there. And I think that that is really difficult when you’re young. I mean I am getting to the stage now when I am going to go into full time work, so it's not as much of a factor. But definitely for people thinking about taking gap years, or like going away after school and uni and things that, you know, it is like difficult to have to factor that in. And also even without the vacc-, if you put the vaccinations aside, just the fact that you have a lower immune system and you’re going to countries where you know, like food isn’t as clean and water is-, and like you know the conditions make you feel like you’re more likely ill to get ill, so you kind of tend to worry about things as if you’re like an elderly person because you know that your immune system you know might not be able to handle it and you’re more susceptible to getting ill than the rest of your friends would be. 
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