There are many sources of information and support, both practical and emotional, that young people with psoriasis used. These include:
- medical professionals, including referrals for professional counselling
- the internet: websites, forums, discussion groups, social media, blogs such as NHS Choices and the Psoriasis Association (charity organisation) webpages
- documentaries, books, pamphlets (including ‘patient information leaflets’ for medications)
- family members
- friends and partners
- school and university e.g. teachers
- work (e.g. Occupational Health services, colleagues, employers)
- others with psoriasis – including those online (e.g. posting in forums)
- religion – some found this was a source of support
Medical professionals were a key source of information about psoriasis. The main information young people wanted from their doctors and nurses were explanations of the condition (symptoms, causes, triggers) and treatments. Many also wanted information and support for emotional impacts.
At all stages of having psoriasis, from the first symptoms onwards, many young people looked online for more information. There were mixed opinions on whether it was helpful or not to self-diagnose before going to a doctor. A few people knew of psoriasis and skin condition charities, and had looked at their websites and social media accounts. Hannah says she would like to fundraise for a psoriasis charity in the future. Others weren’t aware that any psoriasis charities existed.
Before Jack was diagnosed with psoriasis, he found it reassuring to see photos online that looked like his symptoms.
Before Jack was diagnosed with psoriasis, he found it reassuring to see photos online that looked like his symptoms.
Age at interview: 24
Sex: Male
Age at diagnosis: 20
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Do you remember what you thought when you first started to get some small patches on your trunk of psoriasis?
Yeah, so my first thought was, was quite panicked to be honest. I think that most people when that kind of thing springs up you just think ‘why am I getting this? What is this? Is it like, you know, some sort of tropical disease that I’ve caught over the summer? Like is it cancer?’ you know, y- you just don’t know at all. But yeah, I think just looking up on the internet it was quite, it’s quite easy to tell, especially with like the guttate psoriasis, it’s quite easy to tell exactly what it is.
So that was that. What did find when you searched in the terms that you were looking for, that psoriasis was automatically the first thing that came up?
Yeah, pretty much, yeah. So it’s, it’s just so recognisable and there are pictures up on the internet now that straight away, you know, I could tell. Obviously, you know, I wasn’t a 100 percent sure until I’d been to the doctors. But yeah, I mean I was quite, quite certain, reasonably relieved.
Louis preferred going to the doctors than looking online for a diagnosis.
Louis preferred going to the doctors than looking online for a diagnosis.
Age at interview: 21
Sex: Male
Age at diagnosis: 18
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Did you do any research online about psoriasis during that time?
I didn't really do that much. If you go online and start trying to look up skin conditions, you quite quickly get into a- a bit of a sea of something-it is and something-else-itis and this-iasis and that and the other, and all of them sound the same. Red, itchy rash; some of them are here, some of them are there. But they all effectively sound the same. So I quickly realised that I wasn't going to get anywhere from trying to diagnose myself, I would trust the doctors I was seeing to hopefully do the best- like do the right thing. And even though they couldn't say it's definitely this or it's definitely that, and maybe one week they'd say this, and then the next week it looks a bit more like this, I don't think that yeah. I don't- I don't think in my case it was useful to try-, to spend all day trying to work out what it was and Wikipedia this and that and the other symptom, because it wouldn't really shed any light on it, it would just make it a bit more confused. But I think it did make a difference when it was sort of confirmed, as it much as it can be, as a psoriasis, that I could sort of- it had a certain set of symptoms that were- were psoriasis as opposed to being a sort of general dermatitis or an eczema or this, that and the other.
Russell was on holiday when he had his first major flare-up of psoriasis. He looked up his symptoms and worried about what it could be.
Russell was on holiday when he had his first major flare-up of psoriasis. He looked up his symptoms and worried about what it could be.
Age at interview: 20
Sex: Male
Age at diagnosis: 19
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I was with my girlfriend and she looked at that and was like “Don’t read too much into the internet” because well you know there’s so much out there and things like that and I knew she was right and kind of knew the same myself but it’s much more difficult to see that when you’re the one who’s googling something that you think you have. So it was nice in that way to have someone else sort of telling you to be rational and reasonable because it's harder when it’s about you, if that makes sense.
Was there anything else when you were googling that you thought it might have been?
Nothing from memory, no, no. I think the only other thing I kind of assumed it was either just dry skin or maybe, or maybe eczema and then obviously there’s always the irrational part of you that thinks it was some horrible tropical disease that you’ve picked up but when you kind of rationalise it you know that it’s probably not and of course it wasn’t, so.
There were some things that young people hadn’t been told by their doctors, including information first heard about when looking online, reading a leaflet, from alternative therapy practitioners, or through friends with psoriasis. Russell’s GP gave him a general leaflet on psoriasis but didn’t mention anything about the role of lifestyle (especially diet). Lola learnt about associated health conditions, including psoriatic arthritis through internet searches, which left her wondering “what have I got left to find out?” Most people said the emotional side of psoriasis wasn’t talked about in their medical appointments as much as they would have liked.
Some people looked online to find out about others’ experiences of having psoriasis, seeing doctors and using treatments. Adam feels that reading other people’s stories online “empowered” him to keep seeing GPs at times when he felt little progress was being made. Damini liked seeing other people’s ‘before-and-after treatment’ photographs of their psoriasis. Learning about others’ experiences helped some decide about treatments to try, such as phototherapy and systemic medicines. Hannah had used American forums and found out about treatments used there, some of which later became available in the UK. A few said that they had looked online for home remedies. Family members sometimes looked online about treatments on behalf of the person with psoriasis as well.
Steven uses social media to learn about others’ experiences with psoriasis and share his own.
Steven uses social media to learn about others’ experiences with psoriasis and share his own.
Age at interview: 22
Sex: Male
Age at diagnosis: 14
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Twitter, I’ve tweeted about it quite a bit. I’ve been tweeting kind of once a day actually about this treatment and that was how I found this. I can’t remember exactly how, actually. I was looking at something, I think and then as happens with Twitter. Happened to find that the Psoriasis Association I think it was retweeted me a few weeks ago and someone from that followed me. He’d had light therapy that hadn’t helped him. And when I said that I hadn’t had it in the end he said, “Oh right, what you having?” and he’s kind of keeps like asking questions, which is actually like quite nice. I don’t mind that. I, I, there are a lot of different things that I do on Twitter, different organisations, different groups. And so, it’s kind of just like another one that I write things about. It doesn't like, in a way I kind of enjoy talking about it, because I think like someone might mention something that I might then be able to use and like try. I think a lot of it is really what works for you and if you see something sometimes it’s worth trying it. But you do get people as well in general being like, “Use this. Use this. Someone I know has done this and it’s amazing”. And sometimes you think, like ‘really,’ and my Nan, my Nan, bless her, she tries the hardest, but she’s the worst at like, “Hi, I saw this thing on the news today about psoriasis and they’ve got a new drug out and da, da, da, da. You should try it. Why don’t you try it? Why aren’t you using it?” I am like, “Calm down, please” [laughs].
Hannah helped educate her dermatologist about online psoriasis forums.
Hannah helped educate her dermatologist about online psoriasis forums.
Age at interview: 24
Sex: Female
Age at diagnosis: 16
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I talk a lot about the forum with my dermatologist who was quite interested to know because he'd never read about them and he said like, “I've had a few patients who said they they've looked at stuff online,” but doctors always tend to view looking at things online like it's a negative thing. Even though I felt like it really, really helped me. And I just think it's important to be informed. Like it isn't, it's not that the dermatologist is ever wrong, but it's just that there is more than one option, especially with skin conditions where there is so many different medications.
My one dermatologist is the only person I've actually mentioned the forums to but it was sort of a team in the room, and they were all kind of quite interested, they were like, “Oh yeah you know we've never really seen them before, but we've heard about them, patients have spoken about them.” And they were just kind of baffled as to why I'd really decided on Stelara and not any others first. And I just sort of explained, you know, people've had good experiences. I know the issue with it is that there is no long-term research cos it hasn't been around that long but it's really similar to other biologics.
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.
Online discussion groups and blogs were usually seen as a helpful addition to other forms of support (such as from friends, family and partners, and professional counselling). Lucy liked the blog of ‘Flaky Fashionista’ which talks “about different clothes to wear for your psoriasis and hairstyles and make-up and she’s fab.” No one we spoke to had been to a face-to-face support group about psoriasis, but Damini and Lisa joined Facebook groups for people with psoriasis where they can connect to others and hear about their experiences of having psoriasis. Online emotional support could be helpful, especially for those who didn’t know anyone else with psoriasis in their ‘real’/offline life. It could be reassuring to know that the condition is more common than they had first realised.
Sometimes people met others with psoriasis through school/university, social circles (friends, partners), family members, work colleagues and medical waiting rooms. Swapping experiences of trying different treatments (like steroids creams and phototherapy, as well as alternative therapies) was valued. Lucy discovered some of her friends also had psoriasis when they responded to a blog post she had written about her experiences.
Adam found it a positive experience seeing others with psoriasis in the waiting room when he was having phototherapy treatment.
Adam found it a positive experience seeing others with psoriasis in the waiting room when he was having phototherapy treatment.
Age at interview: 24
Sex: Male
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The experience of kind of having the treatment was fine. It was quite, almost nice to be around other people that were g-, were going through it. I remember seeing this young girl. Again this would kind of, sort of try to put it into perspective. Do you know what I mean? I’m so conscious of myself. And she had really bad, I think it was psoriasis down one side of her face. And, and just seeing her, and I just remember being really cheered up by her because she was like so rowdy and so kind of confident and cocky. And she used to bring her friends with her from school. And I just remember thinking, “You’re amazing” this girl. And I’m sitting here and like I’ve got a few patches on my back or something like that. Well, it is worse than that and it is, and it means a lot to me. But I just remem-, and then this girl used to bring her, all her like schoolmates with her cos she didn’t want to go on her own. Or cos, do you know what I mean? Cos it was boring for her. Poor girl had to go like and stuff like that. And she just seemed like, so kind of like, “Yeah, whatever.” So kind of, “It didn’t matter” about it.
I remember seeing this guy that I really fancied there and, and being quite happy that he had psoriasis, cos I was just like thinking, “It’s not just me.” And, and so, cos you just assume that kind of like everyone who’s like ugly has like a bad skin condition. I know it’s terrible to say and really judgemental. But someone that like, it was quite nice to see that someone, ha-had I seen them on the street, not knowing that he’d come to that clinic, I would’ve been really envious and angry almost at him at points. Being like, “Fuck it. Like probably got perfect skin, perfect life” or something like that. And, or if I saw him in a bar. Kind of being like “Oh I’ve got stupid fucking, look at this guy. I wish I was like him.” And that sort of guy was sat next to me, also undergoing what I was going. So that kind of almost brought people like together in the same space and we were all just all different walks of life. And so it was quite nice in that sense to go.
Not everyone felt they needed or wanted to talk to other people (online or in ‘real life’) about their psoriasis. Some didn’t think that they would benefit from doing so or were too nervous about it. A few people said they would have liked more support early on, but felt that they didn’t need it now that they are older and have learnt to manage their psoriasis.
Some people who had used the online groups had read others’ posts but didn’t write anything themselves. However, a few had and this includes Hannah who posted about her positive experience with biological injections. Others had blogged and Carys used her closed social media to “vent” when she felt frustrated about her skin.
Damini found it helpful to read about other peoples’ experiences of psoriasis and has recently started a blog to share her own.
Damini found it helpful to read about other peoples’ experiences of psoriasis and has recently started a blog to share her own.
Age at interview: 21
Sex: Female
Age at diagnosis: 4
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I’ve read up on about how it effects people psychologically. I didn’t actually realise that people actually think the same way that I think, that it does affect you psychologically. You just think it’s a skin disorder, but it’s more than a skin disorder. The hardest thing I find is that you have to live with it every day and you get a, there’s not a minute that you don’t think about it. You look in the mirror and it’s there. You go to shower and it’s there. And I think that’s the hardest part. So through like reading online, I noticed that a lot of people think the same.
It made me feel better that I’m not the only one. And yeah, it’s just like a big support group really, that it feels, it makes you feel better that people, people are there that feel the same way and that are coping and, and it helps when you see people that are positively coping with it and are really dealing with it well. That helps.
I’ve recently started my own blog. I haven’t posted on forums or anything. But cos of my last outbreak, cos it did affect me quite severely, psychologically. I decided to create a blog to help others as well. And, yeah, so I’ve been working on that recently.
It helped Megan being able to read online about others’ experiences with psoriasis.
It helped Megan being able to read online about others’ experiences with psoriasis.
Age at interview: 16
Sex: Female
Age at diagnosis: 7
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I would research it on the Internet and like type in questions about it on the Internet to get results. And then I'd like read what other people have put on like psoriasis helpline groups and things, to see if like anyone had been through what I was been through. This is when I was like 11 cos I felt quite alone, because no one really understood; like no one else had it, and no one else really understood me, so I felt like if I researched then maybe other people would understand me. I never wrote my story on it because I was only little, but I read what other people wrote and thought-, and impacted it on my own, on my own life.
Is that something that you still do now, looking online for some information?
Yeah
Yeah? Do you use the similar places, like the psoriasis support sites?
Yeah, I kind of research it just to see what other people write and like everything.
Do you find it-, how do you find it when you read other people's stories of having psoriasis?
I find it quite like helpful, but I feel quite sorry for some people who have it. But like people write things, and then I just kind of-, I like think, 'I did that and it's not actually like that bad.' Everyone, loads of people who don’t have psoriasis say things like, “Oh, having this is that bad, and having this is that bad,” to do with psoriasis. But if you’ve been through it, the thought of it is not very nice, like the thought of doing like one of the treatments isn't very nice. But as soon as you’ve done it, it makes you feel better.
So, you kind of feel happier that you did it, even though you had so many thoughts beforehand that you didn’t want to do it.
When Jack’s psoriasis is more severe he finds it helpful to look online at the Psoriasis Association website, NHS websites and Twitter.
When Jack’s psoriasis is more severe he finds it helpful to look online at the Psoriasis Association website, NHS websites and Twitter.
Age at interview: 24
Sex: Male
Age at diagnosis: 20
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Yeah, so mostly sort of health website-, well I guess NHS website. Couple of other like sort of diagnostic websites, is that the right, the right kind of phrase?
And then also the, is it The Psoriasis Association? I think website as well that has all the forms and stuff and that’s where you can see like ‘okay, this is what other people are sort of, they’re going through as well’ and people are going on there talking about, “Oh my goodness, this has come up on my arms,” as well and stuff like that. And you’re like, ‘yeah, you know, this is happening to other people as well’.
Do you ever post on those forums yourself?
Nah, I don’t, I’m not-. I’ve never really been on-, been that kind of person with [laughs] sort of contributing to forums. I’m more the kind of person that go on and read bits other people have, have written.
Does that tend to be sort of practical information or is it also sort of the more emotional support, if there is an emotional side to you for psoriasis?
Yeah, yeah, it sometimes is I guess, yeah. It sometimes is. Sometimes it’s, that’s actually how I, how I came across this. Sometimes I’ll just type it into Twitter and see what people are saying and you just get the, these amazing short little things of someone being like, you know, “My bloody psoriasis is flaring up again [rarara],” I’m just like ‘yeah, these people are going through the same thing,’ you know. Yeah so, in a way, it’s, it is quite therapeutic but yeah, I guess I don’t do it all that often but sometimes when it is, it’s quite bad, I do.
Downsides of looking online for information and support were also mentioned. Some pointed out that not everything you read is true or helpful and cautioned about scams promising a ‘cure’. Abbie found conflicting advice. A few people had looked up images of other people’s psoriasis, which could be worrying and upsetting. Adam found it off-putting when he saw a psoriasis support website that he didn’t think had been updated for a long time.
Steven struggled to find an explanation of the causes of psoriasis which was pitched at the right level.
Steven struggled to find an explanation of the causes of psoriasis which was pitched at the right level.
Age at interview: 22
Sex: Male
Age at diagnosis: 14
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With psoriasis though, I’ve struggled to find more beefy, I think is the best way of putting it, information. The bones were there. But there was no meat on those bones and to like, I’m quite inquisitive with things. I like to know what’s going on. I like to know exactly, like as much as I can understand the reason. And, you know you look up something more common and like this sounds really, I don’t wanna sound like almost cruel and heartless. But if you look up cancer there are a 100,000, not, obviously because it’s far more common than this – but there are hundreds of thousands of web pages of like in-depth information about what the cells are doing and what type of cancer you’ve got and whatever. And there is stuff about like the different types of psoriasis and that’s kind of where it tends to – you know, you can look up at Wikipedia and it goes into like the chemical compound of like what your skin’s doing. And you’re like, ‘yeah, that’s a bit too much actually. [Laughs] Like, calm down’. But there wasn’t really anywhere that was kind of like intermediate. I’m lucky that I’ve got dad and I said to dad like, “Come on mate, what’s going on?” and he kind of like helped me. But it can be difficult to find stuff.
Adam came across scams online promising long-lasting ‘cures’ for psoriasis.
Adam came across scams online promising long-lasting ‘cures’ for psoriasis.
Age at interview: 24
Sex: Male
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I’ve paid money to fraudsters online for like dietary advice, exercise, health advice. So, which didn’t, well, it was just an absolute scam. And I knew it was a, as I was doing it I knew it was a scam. I was just so desperate, kind of like that. So I’ve tried to change my diet. That’s about it really. What else have I seen online? Ah things like “buy this kind of smoothie making guide. And if you put like all of this and this and this and this, then just live off olive oil, you’ll be fine” or something like that. Like really there’s stupid things that I’ve seen, that people kind of are desperate, like people really are. Like I was desperate. Do you know what I mean? I was so close to falling for a lot of them.
But I paid for this booklet that had like a guide. I think I paid like 20 dollars and it was just a PDF that was sent to me. And, and it was just basically like, “Follow these steps and you won’t have psoriasis.” This guy who apparently had psoriasis posted on the forum his like cure for psoriasis and it was a dietary cure. And, and it was basically like, “If you eat just this for the next like 40-odd days or something like that, then your skin will go from here.” And this guy had very severe plaque psoriasis to here. And he had an after picture. I don’t know if you’ve, if you’ve come across any of them. And I was like, “Oh, my God.” And I started emailing this guy. And I don’t know whether, like I feel he may have been genuine, like that happened to him. And I don’t, cos it didn’t come across at all like a scam. Like to me, he was emailing me back like decently. Like, without kind of being like, “What’s your credit card details?” or anything like that.
A few people felt that there should be more tailored information and support for young people. Megan thinks an online “support group for teenagers” would be good, as most of the things she found online were for older adults and so missed big topics for young people (such as school life). Ella would like to see more online video tutorials about applying make-up specifically to cover psoriasis on her face in a way that wouldn’t irritate the skin.
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