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Psoriasis (young people)

The impact of psoriasis on confidence and self-esteem

Psoriasis can make people feel self-conscious and negatively impact their confidence. Some thought psoriasis added more worries about body image and identity on top of other pressures faced by teenagers. Ella thinks this is especially difficult for young women. Some people who had psoriasis since childhood, like Damini (diagnosed age 4) and Megan (diagnosed age 7), said it didn’t really affect them psychologically until they were teenagers. Others, like Abbie and Sofia, were teased at an early age. Carys and Lucy thought the impact on self-esteem could also be hard on families, especially parents, of young people with psoriasis.
 

Being bullied at school has had lasting impacts for Abbie. She works with children now and finds they can say hurtful things.

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Age at interview: 20
Sex: Female
Age at diagnosis: 10
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Some people I'm pretty -, I am open with, and I will, I open - tell them. When you’ve got little kids and they’re asking, "Oh what's that, what's wrong with you, what's wrong with that?" "Oh, I've just got bad skin," and they like to ask more questions; it does kind of just -, "I’m tired, I don’t want to just have to explain to you cos I don’t actually know you either," whereas people with working, I do just kind of ignore it where some people do ask questions and…

It's just that I don’t really want to go into much detail and explain it whereas, unless you, I really know them and I will openly speak to them, and I have had like comments like -, there has been jokes from little children before where they were just making rhymes with my name so, "If Abbie gets grumpy she becomes crabby Abbie," and just little comments like that – they're fine. But then someone said, "Scabby Abbie," the one time and that really, really brought me down cos that’s what people used to say when I was younger, and I just couldn’t, no that really upset me.

How did you deal with that situation?

I just kind of battled through the work but when I get home it's just like, 'No, I've had one of those bad days and I just can't do it.' Usually end up, went to the bar [laughs] and just sat with just even people that I knew and just had a drink just to, just need to calm down cos it's not really one of the things that I [sniffed] enjoyed.
The effect of psoriasis on confidence can affect all aspects of young people’s lives, from: As Adam explained, “how my skin is just really kind of like impacts on everything that I do”. Jack described having psoriasis on his face as something he’s always conscious of “at the back of your mind”. Others felt that their confidence was not too badly affected or that they had found ways to manage many of their feelings about it.
 

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.

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Age at interview: 22
Sex: Male
Age at diagnosis: 17
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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. 
 
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Adam talks about his appearance, as affected by seeing his reflection and with different room lighting.

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Age at interview: 24
Sex: Male
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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.
 

Steven tries not to let psoriasis have an emotional impact on him.

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Age at interview: 22
Sex: Male
Age at diagnosis: 14
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There have been days when it’s got me quite down. Very few. And I think I tend to have that when there is something else going on that is playing emotionally. I remember when all my friends went to university and I’m still at home, cos I didn't go. I was working and I was quite like down in general. And then, you kind of, I kind of like hooked it, hooked it onto there and kind of like made it part of the thing. It has [5 second pause] I won’t say it’s made me upset or angry, but there is almost like resentment sometimes. Not very often. And I think I’ve kind of like learnt to live with it and I’ve learnt to laugh about it. And, I think, as I said last week a, the hospital if you don’t learn to laugh about it then you learn to cry about it and that’s really not a great way of living with it. I’m quite a positive person and I had to be positive. At one point, the way I got round it was by naming the patches which sounds ridiculous and it was when it first started and I had like, John, [laughs] Joan and you know. And I think that was kind of like my coping mechanism for a little bit. And then, I think I got a bit too hooked into naming them. And it wasn’t really helping at all. And I was like, okay, firstly you know this is ridiculous like why are you carrying on doing it? But like, what’s that achieving? Nothing. Let’s just kind of stop getting attached to it, almost like pretend it’s not there. Use the like 10 minutes of your day when you have to moisturise or whatever to like acknowledge it’s there and then the rest of the time just kind of ignore it unless someone asks about it. And I think that really helped, because I kind of like, didn't forget it was there, cos I know it’s still there, but I kind of pretended it wasn’t for a bit. And once I’d done that and I’d kind of decided that I’m gonna kind of go with it. Then, I kind of started to kind of not be so emotional about it, I think. 

I mean, there are days when I, picture pops up on Facebook or something and I think, ‘oh god, there’s a horrible like patchy bit of forehead there like awrr’. And I think but do you know what, if you look back through all the other photos, it’s there, but it’s just not as prominent and I kind of have to ignore it. And, it can be hard. But in a way I think only has hard as I make it. And I try not to get wound up by it, because there’s nothing I can really do about it. I mean, I do the treatment and that’s helping. But I can’t just [clicks fingers].
Some remembered when other people had done or said things which made them self-conscious about their skin. Jack says this tends to be people “noticing and pointing it out to me”, but others had experienced bullying with nasty comments and physical injuries. Zara remembers when other children at primary school stamped on her feet, where she has psoriasis. Abbie moved schools because of bullying. Megan sometimes didn’t want to go to school because of name-calling and says she lost a lot of friends. She was clear that the problem wasn’t having psoriasis, it was other people’s responses and behaviour that upset her most. Sometimes the things others did or said weren’t meant to be hurtful, but often were out of ignorance. Ella and Lola don’t mind explaining about psoriasis but don’t like it when people are “rude”, “awkward” or “mean”.
 

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. 
 

Steven’s had people make ignorant comments to him before.

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Age at interview: 22
Sex: Male
Age at diagnosis: 14
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It can be difficult, you kind of get used to like people asking you the whole time if you wear short sleeved T-shirts. It’s like, in the summer I tend to wear T-shirts and shorts. And people are like, “You’ve been bitten. You’ve been bitten”. And I’m like, [looks around] “Where?” and they’re like, “Can’t you see it?” I’m like, “No” [laughs] they’re like, “That big patch”. “Oh, I’ve haven't been bitten, it’s psoriasis”. And occasionally, very occasionally, you get some like really like nasty things. I once was in public, I was in the high street somewhere and this woman said to her daughter, “Step away from the leper.” And I was like, sorry, no, this isn’t, this isn’t going on. I’m like wearing a T-shirts. It’s not leprosy, it’s psoriasis, like calm down. And I thought like, not only is that quite bad for me, but like, if I was a person with leprosy like how would I feel, like that’s horrible. Had a pharmacy assistant recently tell me like, “What’s the on your forehead, you look really good on it.” And I was like, is that meant to be a compliment, because I don’t find that very complimentary, like it’s a skin disease, what you playing at. “Oh, I didn't realise, I’m sorry, I just thought it was just sort of like some of like skin tag or something”. I was like, even if it was a skin tag, like why would you say that. I think you just have to kind of like be prepared for people to say stupid things. Like, there are a lot of stupid people out there and don’t realise, and you just have to be prepared to like explain it. And, that’s something that I think, I’m not afraid to talk about it and I don’t think you should be because it can be a big part of you, y’know. In the summer when shorts time, I’m wearing a T-shirts and shorts, I’ve got six or seven big blotchy patches of faky- faky-, flaky skin. People are gonna ask and I think you just have to be prepared to answer them and be honest with them, because they tend to then be a bit more kind of like sympathetic I think is the best word for it. And like they always apologise, normally, when they see you and you say, “Oh, it’s a skin disease”, [deep inhale] “Oh, I’m ever so sorry, I’m ever so sorry”. And it’s just, I think if people then know they might not be so-, if they come across it again they might not be so like, “Ergh, what’s that?”
Negative feelings about psoriasis can be ‘internalised’ (when the person thinks nasty things about themselves, even if nobody else believes or suggests these things). Adam overheard his colleagues making nasty comments about a customer with psoriasis once, unaware that he also had the condition.

People had different strategies for managing times when they felt less confident about psoriasis. Often this involved hiding psoriasis with clothing, make-up or hair styles, though this is difficult with skin flaking and for very visible parts such as the face and hands. Carys found make-up “took the redness” away, even though the dryness of the skin was still there. Louie found wearing long-sleeved tops sometimes drew more attention and questions about his skin. Some people cancelled plans when they felt bad about their psoriasis. Damini says she would “hide away” in her room at university, “make excuses” to avoid socialising and stopped posting on social media. Hannah found she was “pushing everyone away” at low points. Others, like Louis and Steven, said they refused to let feeling embarrassment about psoriasis stop them from doing things.
 

Damini talks about gender and the use of make-up.

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Age at interview: 21
Sex: Female
Age at diagnosis: 4
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I did used to think that it used to affect girls more but then nowadays I think they’re both, both genders are equally insecure about themselves. Yeah. I think girls, I think it’s easier for guys to cover up, because they don’t have to wear dresses and skirts, whereas girls naturally want to wear different clothes and that’s harder, I think. 

Is that similar with make-up as well?

Yeah. It’s harder to apply certain make-up, so that’s hard, whereas guys, they don’t really have to. But then, on the other side, girls can use make-up to cover up, whereas you wouldn’t find that a guy would generally. And also, girls can keep their hair down to cover up any patches. That’s what I used to do quite often. With guys, they don’t really have that option. 
 

A few summers ago, Megan covered up so others couldn’t see her psoriasis.

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Age at interview: 16
Sex: Female
Age at diagnosis: 7
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I decided all through the summer I'd wear jeans or tracky bottoms, and I'd wear long sleeved t-shirts and jumpers. Even if I was really hot I'd still wear them, like I didn’t want people to see my skin, so I'd do it anyway. And then, as my skin got better I'd like wear whatever I felt comfortable in. But when my skin was really bad in July, I decided that it was best if I just covered it up, so no one saw it. So, I'd just, I'd go out with my mum like shopping, but I'd wear so many layers, and you'd see loads of people like in shorts and t-shirts and everything, and then there'd be me in like jeans and like a long sleeved t-shirt and a jumper.

So, what was that like for you if you have to go out with sort of more clothes on, more layers?

It would, it like made me feel really hot, and like I wanted to take it off – but it made me feel a bit better, like no-one can see my skin so I'm not getting judged; and I guess that’s the thing that kept me wanting to do it. Like, I'm not getting judged and I'm quite happy like that. I don’t want to be judged by people because that makes my self-confidence even worse. And just as my self-confidence was getting better, it just went straight back down again.
 

Lucy finds wearing make-up on her face and body boosts her confidence.

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Age at interview: 24
Sex: Female
Age at diagnosis: 11
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And then make-up and I mean, I completely respect people who don’t wear makeup. I respect people who wear loads of make-up, fake tan, whatever. But for me, personally, I love make-up and I really do think make-up is a way, not just to cover it up, but to give me confidence. Like I wouldn’t feel confident going out, you know, without make-up on. And even, not just make-up on my face, but for my prom, in Year 11, I had this beautiful floor length dress, but it was quite a low back. And I had quite a lot of psoriasis on my back and I thought ‘what am I gonna do?’ And me and my Mam researched sort of like concealers and stuff. And we found this stage make-up. And it was brilliant. And it was, it was y’know, the same colour as my skin and we managed to like blend it all in. And it looked great and I felt so much more confident with that on and I just think, ‘why not?’
Growing in confidence

Some people said they had become more accepting and confident with time. Often they thought that getting a bit older helped. Simon feels he’s “accepted” psoriasis as only one “part of me” rather than something “to be defined by”.

Many felt strongly that psoriasis is not something to be embarrassed about. This can be difficult to put into practice though. Steven and Damini said it can be nerve-wracking going out in summer in shorts that showed their psoriasis or scarring. For some, feeling self-conscious about psoriasis was also linked to wider pressures on appearance and body image which they thought could make people feel bad about themselves.
 

Megan feels strongly that she shouldn’t have to cover up her psoriasis.

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Age at interview: 16
Sex: Female
Age at diagnosis: 7
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It got to the stage last year where I was, I remember I was stood in my living room, and I said to my mum, "I don’t care what people think about my skin; like it's my skin, so I'm just going to wear whatever I wanted." And then I went out last summer in like skirts and everything, and yeah my knees were bad but I just let people look at it, it didn’t really affect me. I think it affected me more when I was younger because I didn’t want to get judged. But it's my skin, and it has nothing to do with anyone else, like they shouldn’t judge it because it's not very nice. So, I just wore whatever I wanted and let people look at it.

And is that your attitude sort of now, still, that you'll wear whatever clothes you want?

Yeah

You won't sort of change your style or your fashion choices?

I did feel quite unconfident in the summer last year when I did it, like I'd go out and I'd get dirty looks, I'd come home. I'd think about it but I'd do it again the next day cos I was trying to prove to myself that I'm not going to let others affect me. Like, I'm dealing with it the best I can, and I've dealed with it for like eight years at this point, so I don’t think it could have affected me much more.

Yeah

So, when the summer came – and I'm prepared for this summer too, cos I'm just gonna, I'm just gonna to do what I did last summer. Like, because most people around here know me, so they know what my skin's like, so I don’t think I'd get like judged, and little kids look at me but then they’ll ask their mums after, and that kind of makes me feel like a bit better. Like they'd go, "Oh what's that on her knee?" and their mums would go to them, "Oh it's psoriasis," and then they'd just shrug it off and walk off, and that makes me feel a bit better. Like, I'm helping them learn about something, because they question their parents about it when they get home and everything and that kind of makes me feel like I'm educating people.
 

Lucy thinks the age at diagnosis is important, with social and emotional impacts.

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Age at interview: 24
Sex: Female
Age at diagnosis: 11
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I think I was diagnosed at a really sort of key time, because I was just about to go to secondary school. And I was very aware of my appearance and how I looked and things. And, I did find it very difficult. I found it more difficult then than I would now if I was just diagnosed now, I think. And I think, because, as a child or as a teenager, especially, y’know, I was going through school and I was working really hard on my studies, but then, y’know, I was interested in boys and I had lovely friends as well, but all of these things coming together and I thought well, and it was, it’s so difficult. You don’t really, you don’t know who you are or what you want yet, I didn’t anyway. I had no idea. And but now, at, at 24, I’m secure in a relationship and happy, you know, career wise and I think when you are happy like that and secure, you tend, well, in my, in my experience, I now feel better about my condition and feel that I can handle my condition better and keep it under control better.
 

Lucy tries to stay positive and surround herself with supportive people.

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Age at interview: 24
Sex: Female
Age at diagnosis: 11
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I try to stay positive a lot. And, you know, put things into perspective and, and see how lucky I am. But sometimes, I do find it so difficult. And I hate, I hate the fact that I’m being all you know, self pity and feeling sorry for myself. But sometimes I’ll have days where I’ll think ‘none of my clothes’ll look nice. My hair won’t look nice. My face won’t look nice. I won’t look nice’ [laughs]. Sometimes I’ll think like that cos of my skin, cos my skin is really bad. Sometimes it will be so sore that I’ll just be so frustrated and just wanna stay in all day. And it’s so easy to do that. But, but you can’t, like I can’t, cos then once you get into that, that habit, it’s, it’s, you know, it’s bad. I really try to pull myself out of it. And I think, I do think having a supportive partner and having supportive friends and supportive family really, really helps me. I think I’ve been in friendships before and relationships before where they haven’t been that supportive and I’ve felt anxious or stressed and that’s made my skin worse. And it’s just not worth it. It’s just not worth it at all. And now I’m not in those friendships or relationships, I feel so much better for it.
A few people said there had been some good things from having psoriasis – such as becoming a kinder and more understanding person. Many wanted to help others going through the same experiences, such as by starting blogs. Megan is “passionate” in educating others about psoriasis, including her school teachers, and Lucy volunteers for a skin conditions charity. Talking to supportive others (including those who have psoriasis themselves as well as family, friends and partners), was usually seen as a good thing. Damini says she was “bottling” her feelings up for a long time but feels “a lot happier within myself” since she started talking more about her psoriasis.
 

Jack talks about positive impacts of psoriasis on his outlook.

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Age at interview: 24
Sex: Male
Age at diagnosis: 20
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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.
 

Megan says she’s become a better person through her experience of psoriasis.

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Age at interview: 16
Sex: Female
Age at diagnosis: 7
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And then, as I got like older, I kind of realised, but I still had that thought in my head like, 'Why, why did I get it, why me, not anybody else?' But then I kind of have realised that it's made me stronger. Like, cos I'm-, I know what it's like so I'm prepared to do whatever now for it cos I'm stronger than I was when I was little, and I understand more.

Yeah, yeah. Could you say a bit more about that, about how it's made you a stronger person?

I believe that, because I've been through like most of the treatments, and I've had so many hospital appointments, blood tests, x-rays, everything – I believe that it's made me stronger, like it's made me think about it more, and made me a better person, because I know what other people can go through, and I can help other people that have been through it like I did, and I can be the stronger person. Because, I know when I was seven, I felt like I'd give up and everything because of it, but I've kind of learned that there's more things worse than it, and it's not pretty and it's not very nice to have, but it makes you stronger because you learn to deal with it.
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