Some of the young people we talked to felt psoriasis had an impact on their relationships with family members and at home, in both good ways and bad ways. Families helped by:
- being there to talk to if they’re feeling down
- applying treatments for them
- financial and practical support, including arranging appointments and paying for private dermatology treatment
- researching the condition and treatments (including alternative therapies)
Parents were the main family members talked about, but others also mentioned siblings, grandparents and pets.
Megan talks about some of the ways psoriasis has affected her relationships with her siblings and pets.
Megan talks about some of the ways psoriasis has affected her relationships with her siblings and pets.
Age at interview: 16
Sex: Female
Age at diagnosis: 7
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I think it's affected my sisters because even though I can talk to them about it, I think it's affected them a bit. Like, at first – I remember us all having this big disagreement about it, and like them calling me names, but then after a while they just kind of realised; and I think it affects them because it affects me. Because when I'm having like a really bad day, and it's really hurting, and it's sore and it's itching, I get really moody.
And then, because I'm moody, they don’t wanna do anything - cos I'm moody and upset – they don’t wanna play; they just want to sit there and be grumpy as well, so it kind of affects them because of it.
Yeah. And does it have any effect on pets at all, cos I know you’ve got a couple of pets?
It affects like my dog, because I can like stroke her and everything but I have to be really careful cos if my skin falls off in front of her, and she eats it or something; and then I don’t really tend to stroke my guinea pigs or my cats, not really.
Lucy’s family give her emotional and practical support.
Lucy’s family give her emotional and practical support.
Age at interview: 24
Sex: Female
Age at diagnosis: 11
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I’m really close to my mam, dad, brother and sister. We’re a really close family. And my mam and dad are both one of five, so we’ve got a big extended family. And so everyone is always looking for alternative therapies and having like clippings from, from the paper and from magazines and stuff. So it’s really nice. And I can just remember, I’ve got memories of, you know, sitting in the kitchen with my mam rubbing olive oil in my hair or my dad rubbing cider vinegar in my hair and it’s just, it’s just part, it’s just part of our lives, really. And they’re so helpful and they don’t make a big deal out of it. And, and whenever they’ve found a new therapy, you know, they try it out and stuff on me. And they are just so, so helpful and supportive and loving [laughs] they’re just brilliant. But I think they’re also perceptive as well with how I feel. They know, they can tell if I’m sad or if I’m stressed out about something and sometimes I won’t want to talk to them. So last year, when I was teaching, I lived with my parents and it did get quite stressful sometimes and particularly that episode with my boss and I was unhappy at times and quite stressed. And they know, they know me so well that they know. And sometimes I don’t want to talk about it. But they sat me down and said, “Talk about it.” You know, “Tell us how you’re feeling. We know that, we know that you’re unhappy”. And sometimes I would lose-, I would be short tempered and I’d be a bit mean to my mam and I hate being mean to my mam [laughs]. But, sometimes it makes you do that. And it’s horrible. And, y’know, I’m so frustrated with my skin and so irritated, and I’ll take it out on her or my dad, and you shouldn’t. I really, really shouldn’t and I know it’s easy to, but and they’re so understanding as well. But that’s why even if you don’t wanna talk about it, it helps, like it does. Cos, I didn’t want to talk about it at times and they sat me down and they said, “Look,” like, “We know that you’re stressed or you’re upset and but tell us why. Talk to us about it, like how can we help?” And I’m so lucky to have that, really. To have that support there, very, very lucky.
Family support with diagnosis, medical appointments and treatment
For those who had psoriasis since they were little, parents had usually taken them to see doctors and helped them to use topical treatments. Some people couldn’t remember being diagnosed because it had happened a long time ago, they were very young or the information was unclear. Doctors often talked about the symptoms and diagnosis to the parents, rather than the young child with psoriasis. Megan explains: “I just sat there listening to my mum and the doctor, and I'd only pick up on certain things”. Parents often then had the difficult task of explaining the information to their children. Despite their parents’ best attempts, children sometimes still felt confused and worried about their diagnosis.
Others who developed psoriasis when they were older sometimes asked their parents for advice on symptoms before going to the GP for diagnosis and treatment. Steven showed his mum his scalp when he first noticed skin flaking. Russell says his mum “connected the dots” between symptoms he had a few years before.
It was difficult for Louie to keep going back to the doctors in search of a diagnosis as his mum works full-time.
It was difficult for Louie to keep going back to the doctors in search of a diagnosis as his mum works full-time.
Age at interview: 16
Sex: Male
Age at diagnosis: 13
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I realised it on my scalp, on my head and the doctor said it was some sort of fungal disease which is obviously- we know now it’s not. And they gave me some creams for that and, yeah, I did go to the doctors and they just said it was that and it turned away as something else.
How long did it take for somebody to correctly diagnose it as psoriasis?
Had it for about-, I had psoriasis before someone correctly diagnosed me for about six and a half months, but I had difficulty going to the doctors cos I was young and my mother is a full time-, she works full time so it’s difficult to get doctor hours that correlate with my mums working hours.
So it was very difficult to go to the doctors unless it really got serious and that’s-, by the time it gets too serious it gets pr-, it gets to the point where it’s not easily as treatable because of the severity of it and so it was about six or seven months.
Did the doctors give you anything during that time for what they thought was the fungal infection?
They gave me a fungal shampoo of which didn’t seem to work because obviously it was doing the wrong thing it wasn’t close to be treating me and then they gave me just like a little steroid cream for my face but that didn’t work either.
And that didn’t work either so obviously I went back at a later date.
Parents often helped with psoriasis treatments, especially for young children. Megan couldn’t go on a residential primary school trip as she needed her mum to help with applying her
topical creams. A few people said their mums wrote them sick notes so they didn’t have to take part in
PE at school. Zara’s mum also contacted her school when she was being
bullied about psoriasis.
As people grew up and for those diagnosed when they were older, parents were often less involved in going to appointments. Many young people started booking and attending doctor appointments on their own in their late teens. Lisa says she prefers to go to her medical appointments alone. Zara’s mum travels with her to dermatologist appointments but doesn’t always go in with her. Ella will soon ‘transition’ from a paediatric to adult dermatologist and thinks she’ll start going to appointments on her own. Others prefer to take a parent with them to consultations and ask for their advice when making treatment decisions.
Parents tended to help less with treatments as the person got older, but some help was often appreciated. This included applying topical treatments to difficult to reach/see places like the back and scalp. Megan’s mum used to do her
biological injections for her, as she worried she might “muck it up” herself by putting the needle in the wrong place. Parents often continued to research possible treatment options and alternative therapies for their children.
Parents sometimes gave financial support. Lucy’s parents paid for her to see a private dermatologist when she was first diagnosed so she could start her treatment sooner. The costs associated with psoriasis, including treatment and travel to medical appointments, was a pressure on some families. Generally, as people got older, they covered the
costs of psoriasis themselves (e.g. prescription charges for those who have to pay and shop-bought products).
Emotional impact and family
Some people thought the
emotional toll of psoriasis on them can be difficult for their families too. Megan remembers asking her mum lots of questions when she was younger which she thinks was hard. She explains, “I know I made my mum feel like really upset, cos she didn’t know what to do, and she's a mother and her nine year old child's questioning her about something that no nine year old child should talk to their mum about”. For some, their experience with psoriasis and the support they received had brought them closer as a family. Others felt they had less of a bond because they couldn’t do some activities their parents wanted them to do (for example, wear ‘feminine’ clothing).
The impact of psoriasis on Carys’ confidence was hard on her parents.
The impact of psoriasis on Carys’ confidence was hard on her parents.
Age at interview: 23
Sex: Female
Age at diagnosis: 22
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I think my mum found it hard because she didn’t like seeing me so nervous about simple things like a Christmas party, because she didn’t like the fact that it had knocked me that much and she’s always told me like, you know, “You need to be happy with who you are. It doesn’t matter what shape or size you are.” But she could see that it really had knocked me. And then she didn’t like the discomfort I was in. And you know there was the odd time where it did get to me and she was like, “I wish I could take it away for ya and make it better.” Although it’s only a skin condition it just drove me potty and I think my parents didn’t like seeing how much it knocked me, because you know, I left school with very little confidence and I managed to build it back up when I was at uni and this just totally shattered it again. And I think they didn’t like seeing me like that 16 year old girl again that didn’t have any confidence and I think that was probably quite hard for my mum, because it took her a lot of support last time to help me get back and then when I-. I mean, my friends, I, my best friend was really understanding of it, but she’s, it’s easy for her to, you know, she wanted to wear little skimpy dresses and she had a little crop top and a little skirt on New Year and I look back at the pictures and although I liked what I wore, I look back at the pictures and knowing I wore it to cover my skin. And where I’m stood next to her and my sister and they both look really nice and youthful and I probably look back and I think ‘I don’t really’. I think, I think I found that hard, cos they were full of confidence and wanted to dance and stuff and I was like, “I’m just gonna sit here. I’m fine.” [Laughs]. Cos I just didn’t want people to see it.
Many said they were grateful for
emotional and practical support from their parents. At times though, some of the things family members said or did caused upset or were unwelcome. There were times when they didn’t want to talk to their family about psoriasis for various reasons: because they didn’t feel a need to, were embarrassed, didn’t want to worry/upset them or didn’t want to come across as ‘whiney’.
Itchiness has become an everyday part of Steven’s life. Family members sometimes tell him not to scratch, even if it’s a ‘normal’ itch.
Itchiness has become an everyday part of Steven’s life. Family members sometimes tell him not to scratch, even if it’s a ‘normal’ itch.
Age at interview: 22
Sex: Male
Age at diagnosis: 14
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My problem is that it’s quite itchy and I tend to kind of like agitate it, I think is the best word. I don’t agitate it as much as like make it worse, but I tend to kind of like try and remove the scales or something. And mum is the number one, “Stop picking it,” or like “Don’t touch it,” and sometimes it gets like, literally my head is just itchy and not even psoriasis and like right now, I can feel like here [points to top of head], I just wanna like give it like a normal-, like any other person would do, give it like a scratch. And it’ll be like, “Stop scratching your head, don’t scratch your head da, da, da”. And I’m like, “My head is just itchy. It’s not the psoriasis, please.” And I think you learn like you would learn anywhere else. You learn to live with it. You learn to deal with it. And, it’s just that kind of getting used to something that you’ve not had for the first 17 odd years of your life, whatever it was, and then bang, it’s all changed.
Louie didn’t like it at first when his mum would look online about psoriasis.
Louie didn’t like it at first when his mum would look online about psoriasis.
Age at interview: 16
Sex: Male
Age at diagnosis: 13
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At first when I first got psoriasis my mum used to look online and I used to think ‘why is she looking online?’ cos I was quite depressed I used to say, “Stop like just stop looking online, stop doing everything, it’s my problem”. But then I didn’t realise that by her looking online and her getting more knowledge about it –she got that knowledge so she could help me to deal with it. And then once I got to the point where I accepted her help I really-, I started to go online and search up the information on, on the NHS website or on like websites like the one you’ve got and I did take information from these websites and it did help me and there was little things that you could do to help and stuff like that.
Louie’s siblings used to tease, but are now very supportive.
Louie’s siblings used to tease, but are now very supportive.
Age at interview: 16
Sex: Male
Age at diagnosis: 13
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Well at first cos my brother’s a bit older than me, he’s 19, and when I first got it he must have been about 15 or 16 and he was still a bit childish so obviously he used to-, before he knew it was something quite serious he used to make fun of me etcetera. And obviously I used to throw things back at him about him like a brother and sister or brother and brother do. And eventually once he realised it had got a bit serious –he was supporting me so like today before I came for this interview he did text me and say like, “Good luck with your interview and hope, hope it all goes well,” and that’s the same with my sister, my sister’s very supportive, she’s always been very supportive of me. And my parents – my parents just want what’s best for me and what makes me happy and stuff like going to the doctors and getting new treatments and they do really push for me to get the things that will help me so if it’s a new treatment or a new cream etcetera and they really do support me in anything that I do with my psoriasis or any research I do into my psoriasis or anything like that – they do, they are very supportive.
Some people said they ‘lashed out’ at their family when they were feeling very upset about psoriasis. Knowing of a
genetic link to their psoriasis sometimes lead to feelings of blame and anger.
Hannah says she had a number of side effects while taking cyclosporine, including disrupted mood which impacted on her relationships with friends and family.
Hannah says she had a number of side effects while taking cyclosporine, including disrupted mood which impacted on her relationships with friends and family.
Age at interview: 24
Sex: Female
Age at diagnosis: 16
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So all of the side-, all of the major side-effects are basically about your immune system being low and you being more likely to get like serious illnesses. But the ones that I experienced were just, I had bad headaches and I felt nauseous and certain like food would make me sick. So like diet coke would make me feel really ill and things like that. Which was strange, like that wasn't written down anywhere that I could read. I just noticed it, that when I wasn't on it I could drink it and I felt fine and when I was on it I, like yeah I felt weird. And it would just make my stomach like in pain, I'd get cramps all the time. So yeah, I-, and also it affected my mood like a lot. And that was something that I wasn't that aware of, but my friends and family would tell me a lot. So I became more irritable and I also became a lot more depressed and angry and, you know, sort of emotional and crying all the time about things. And also aggressive, you know I pushed people away a lot of the time and even when the cyclosporine was helping my skin, I could feel like it was still really affecting my mood. Cos usually when my skin's better I feel like a lot calmer, [laughs] I’m a lot nicer to people when my skin's better. But with cyclosporine, I struggled with my personality. I don't know, it felt strange, it felt like I couldn't really recognise myself. I'd look back on it now and think you know I just, ‘that was a completely different person.’ Most of the time angry, just angry all the time. And I felt like I wanted sort of-, it was weird I wanted to talk about it all the time because it was like, it consumed my life and I wasn't really going out. But at the same time when I did go out I didn't want anyone to know. So when I was at home with my friends, you know, it was kind of all I'd talk about, to the point where like my mom and dad would often say to me, you know, like “There is nothing we can do, like you’re on this medication and we can't talk about it 24/7. You know, you have to just like try and cope, and try and see the bigger picture.” And I think everything would anger me, like every time somebody told me to, “See the bigger picture. You’re on medication. You are gonna be fine. You're not dying of anything.” Everything would just kind of anger me and I'd just sort of lash out. And I feel a lot calmer on this medication, it seems strange to think that medication could affect your personality so much, but it did. And I instantly sort of saw the difference when I came off it and I went on other things, even though my skin was still bad I felt different.
Zara was young when she developed psoriasis and didn’t understand why she had it. At first, she blamed her grandfather.
Zara was young when she developed psoriasis and didn’t understand why she had it. At first, she blamed her grandfather.
Age at interview: 16
Sex: Female
Age at diagnosis: 2
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I just didn’t understand why it was me that had the psoriasis and what I’d done wrong. So yeh that used to make me quite angry and upset, but yeh now I just kind of carry on with.
Did you used to have that sort of blame like what have I done wrong?
Yeh I’d just, I couldn’t understand it. My grandpy has psoriasis.
Right.
So he has it on his body.
Oh okay.
And I, when I was younger I used to blame him and I mean when I grew up I realised it wasn’t his fault.
It was just something that happened, but yeh I was, it was annoying because I didn’t realise, I didn’t understand why it was me that had it and whey couldn’t somebody else have had it and because nobody really understood. I felt like I was alone and nobody understood what I was going through.
Having a family member with psoriasis could also be helpful. This includes sharing information about psoriasis and empathising with things like
symptoms and
emotional impacts. Lisa’s knowledge about
psoriatic arthritis came mostly through her dad’s experience with the condition. However, some found their own approaches to treating psoriasis were very different to that of their family members. Adam says he moisturises his skin much more frequently than his dad does. Other people, like Hannah, were the only one in their immediate family to have psoriasis. No one had children, but some talked about having children in the future and a few people wondered if they would also develop psoriasis.
Abbie’s dad has psoriasis but she thinks that because is older and married their experiences with it are quite different.
Abbie’s dad has psoriasis but she thinks that because is older and married their experiences with it are quite different.
Age at interview: 20
Sex: Female
Age at diagnosis: 10
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Mum would always just check up and see how it is and they’ve all been really supportive, like my Dad – he has it a lot worse than me and just from this year having the phototherapy because he's, over the years, he's used the same creams and nothing seems to help, but it doesn’t bother him because obviously he's married with Mum and like everyone that he knows, his family's understanding, so he doesn’t -, it doesn’t really affect him, but then obviously he's a lot older which I say to him like, "It's not gonna affect you, you're older," but I do keep saying to him that, "I've tried this; this has helped," and just trying to help him to be able to go and just go out and go to the doctors and maybe try something different because obviously what he's doing doesn’t help him but it's just he's stubborn.
So, trying to persuade him to just try and make a difference.
So you tend to be sort of the source of education and encouragement for him?
Yeah
Does it ever work the other way round where he sort of gives you information or advice and?
No, my dad's quite quiet and cos he's had it for so long and he just doesn’t go to the doctors about it. He got given this one cream many, many years ago and he'll just keep getting the repeat prescription and using this cream now, and he just kind of -, he just, he just goes with it.
Megan’s sister briefly had a psoriasis flare-up and they went to dermatology appointments together.
Megan’s sister briefly had a psoriasis flare-up and they went to dermatology appointments together.
Age at interview: 16
Sex: Female
Age at diagnosis: 7
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One of my other sisters got diagnosed with psoriasis, so me and her used to go together; we used to be like, wake up early and be like, "We've got the hospital today." But I felt better when she came, cos I like felt like I wasn’t on my own, it made me feel a bit like more secure. Like going on my own to the hospital, I got really scared. Like, loads of people would look at me when I was sat on the bus, and like I felt really self-conscious, but when my sister was there, me and her were just like, "Well, there's two of us, you can't really look at one of us weirdly," like.
But hers went really quickly, she only had it for like a year so hers went really quickly, so then she stopped coming to the appointments with me.
It's still easy to talk to her cos she kind of understands everything. So, we kind of like talk to each other and make sure everything's OK. And she's kind of like, I guess she's like my best friend; like I can talk to her about anything, so as soon as I come from the hospital, she'll be the first person that asks me. Like she'll walk in the door, and like it'll be the first thing she says. She won't say “Hi” or anything, it goes like, "How was the hospital?" and then like that makes me feel better that I know I can talk to her about it.
Hannah will stop systemic psoriasis treatment when she’s planning to have children.
Hannah will stop systemic psoriasis treatment when she’s planning to have children.
Age at interview: 24
Sex: Female
Age at diagnosis: 16
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I'm pretty sure all the medication I've been on – from methotrexate, cyclosporine and now the biologics, you can't get pregnant on them. So when you get to the stage where you’re thinking about having children you have to come off the drug and there's certain amount of time for each one that you have to be off it and I think for Stelara they said about a year or half a year or something so, you know, when it gets to that stage of my life I'll have to think quite far ahead about coming off it and giving myself enough time to get it out of my system. And I think even then I'll, I will sort of still worry to an extent that, you know, has it affected my body in some kind of way.
Home life
For most, ‘home’ was a place where they felt more comfortable about their psoriasis. Adam says his parents don’t “bat an eyelid” when he walks around the house topless with his topical treatments on. Lucy likes to take her make-up off at home to “let me skin breathe”. Damini says “at home, I can be myself. My parents know it’s normal that my skin flakes”. Others felt embarrassed about their psoriasis wherever they were. Zara tends to wear shoes and socks, even at home.
A key aspect of home life mentioned by lots of people was housework. This related to
symptoms, like skin flaking, and treatments. Many were embarrassed about skin flaking and hoovered often (for Lucy, this was daily). Sometimes family members made comments about skin flakes, which could add to feeling self-conscious. Lisa and Louie both found dark-coloured bedding showed up skin flakes. Louie has a spare set of bedding he can use when he has friends to visit and uses a hairdryer to get rid of skin flakes. Impractical aspects of
topical treatments were mentioned, such as waiting around for them to dry and rinsing down greasy baths/showers after using
bath oils/soap replacements. Carys found her clothes would get covered in cream, making laundry “never ending”. Abbie has to be careful finding a laundry detergent/washing powder as some irritate her skin.
Steven hoovers his bedroom and car often because of skin flaking.
Steven hoovers his bedroom and car often because of skin flaking.
Age at interview: 22
Sex: Male
Age at diagnosis: 14
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Cleaning the house, I suppose I’m a bit like at work, brushing it off. Tend to hoover my room, at least the main bit, once a week. I think mainly, because at the moment I’m moisturising and I know that I’m gonna like even with moisturising you do tend to, a bit of flickage [laughs]. Also I’ve not got that much carpet space in the middle of my room. And so when you’ve got like a small amount of space, you do tend to find like it does – ‘oh, a bit flaky this week, okay we’ll hoover’. The car is a place that I hoover, like I got in the car this morning and I was like, ‘God, I should have hoovered’. But then I’m quite car proud anyway as a person. So like, I’d probably be doing it even if I wasn’t doing it. Although would it be as, I don't know. I do notice sometimes round my bed, it happens, like you’re just asleep and you’ve shed your skin [laughs]. And then, you kind of like wake up. I do occasionally find like, in an odd place, like the back corner of the bed, somewhere next to the bedside table you move out and ‘oh, okay, been a while since I hovered here,’ you just like hoover round it. But I wouldn't say I do anything extra special. I just, arr, some weeks I forget about it, leave it for like six weeks and then I think, ‘Oh hoovering time’ [laughs]. I think you just kind of do what you do and each person does it differently as well.
Carys found the bath oil/emollient made her skin feel greasy. She washed out the bath as it made the surface slippery.
Carys found the bath oil/emollient made her skin feel greasy. She washed out the bath as it made the surface slippery.
Age at interview: 23
Sex: Female
Age at diagnosis: 22
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Like I say, you know, and you get out the bath in the Oilatum and you dry off but you’d feel greasy. Then you’d have to put creams on, on top of that. You never felt you’d, I almost, it’s not that I didn’t feel clean but you didn’t feel refreshed, because you still felt covered in like something, like I say, all the creams and things you felt covered in them rather than. So, and if you, you know, if you had to put liberal amounts on you were, you kind of had to.
I think the main thing was like you had to wash the bath out every time you used it. Which, and, you know, you know, you rinse it out after you use it every time, but I had to like properly like wash it and rub it, because otherwise the next person would just fall like slip, cos there was that much like oil in the bottom and you see you had to be like really careful to make sure that you properly cleaned it out otherwise somebody was gonna slip and fall and hurt themselves.
Adam’s routine with topical treatments has been very time-consuming, requiring him to be at home for a long stretch of time.
Adam’s routine with topical treatments has been very time-consuming, requiring him to be at home for a long stretch of time.
Age at interview: 24
Sex: Male
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It kind of sent me almost OCD about it. And I used to try, I mean which probably also wasn’t good for my skin at the time, but I was just desperate to be like proactive in kind of like getting rid of it. That I would put one thing on in the morning, so I’d shower, and then I would drape myself in all the moisturisers, then I would put something on. Three hours later I would go and shower, drape myself [laughs] in all the moisturisers, put something new on. Then, and I would just do this throughout the day, different things. Like five times a day I would shower and then cover myself in, in, in [uh] the moisturisers. I used to go to bed having draped myself in moisturisers in the hope that like it would give my, my skin so much moisture or something like that, that I would wake up and it would be gone. I would wake up being like really slippery and soft, have a good shower. And I would just do this ritual.
Sharing space at home can be tricky. People may need access to the bathroom a lot to do their topical treatments. Heating was also an issue affecting psoriasis for some, either with it being cold when putting treatments on or, for Louie, getting too warm with a radiator on overnight. A few people had woken up others who were
sleeping in the same room by scratching so much.
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