Louie

Age at interview: 16

Age at diagnosis: 13

Brief Outline: (Text only clips) Louie has had psoriasis since age 13. His confidence was knocked at first but he now feels less self-conscious. Louie has tried lots of treatments and thinks it’s important that doctors consider the impacts of these on young people’s wider lives.

Background: Louie is 16 years old and a school student. His ethnicity is White English.

More about me...

Louie has had psoriasis for about 3 years. He first noticed a small patch on his chin but didn’t think much of it until he also had some skin flaking from his scalp. He saw his GP and was initially told it was ringworm (a fungal infection). He saw another GP 6 months later because the skin patches had got bigger and the creams weren’t working. The new GP diagnosed it as psoriasis and Louie remembers feeling really distraught when he learnt that it is a life-long condition. His psoriasis isn’t painful or itchy, and the main impact for Louie is the physical appearance making him feel self-conscious. Louie’s psoriasis has affected most parts of his body. He finds it especially hard to have psoriasis on his scalp as he worries about what others might think of the skin flakes. For example, he sometimes feels quite embarrassed about flakes on his school blazer and tries to discretely brush them off. He used to also avoid wearing dark-coloured clothes and prefer long-sleeved shirts when he felt very self-conscious, but now is less concerned about this. 

Louie has tried lots of prescribed creams and ointments for his psoriasis but found many were off-putting to use. For example, they can be smelly or leave a “shiny glaze”, which Louie worried would draw attention to him. One ointment for his scalp was very runny and took a long time to dry, meaning that Louie would have to get up earlier than usual for school. He didn’t notice an improvement and prefers to use shop-bought shampoos now. Since being referred to a dermatologist, Louie feels more hopeful. He’s due to start taking methotrexate (immunosuppressant tablets) soon and is optimistic that it may work for him. Louis had a good experience with the dermatology doctors and nurses when he went for phototherapy (light therapy) and he felt comfortable if he had to go to some of the sessions on his own. This was sometimes the case as it is tricky for Louie’s parents to get the time off work.

Having psoriasis has made Louie feel depressed and anxious before. He felt like he lost his confidence and stopped socialising or taking part in sports. For example, he used to do competitive swimming but found it difficult having his skin visible. He wore a vest for PE classes as he wanted to cover his skin, but this often drew more attention and people would ask questions. Stress is a trigger for his psoriasis and this can become a vicious cycle. It was difficult when Louie’s psoriasis returned after light therapy as it was during the time that he was also sitting his mock GCSEs. One way that Louie tries to cope with stress is by talking to supportive friends and family. He recently stopped wearing the vest for swimming, a decision he was very nervous about but ended up being “a liberating feeling and quite a relief that I could just go back to how I was before”. Louie also feels that, now he is a bit older, looks matter less when looking for romantic relationships.

Louie says that having psoriasis can make you think and behave differently, but that you should “keep your head up high” and take part in activities that you enjoy. For Louie, going to football matches is “an outlet” which helps him to “be myself again” as he doesn’t think about his skin so much. In Louie’s experience, his friends and family have been incredibly supportive. He didn’t want to tell his friends at first and he didn’t like it initially when his mum looked online about psoriasis, but eventually came to realise that they had his best interests at heart. Louie has since also researched on the internet about psoriasis and learnt, for example, that fragranced bath and body products can aggravate psoriasis. Since cutting these out, he’s noticed that his skin tends to be less red and irritated. Louie encourages doctors treating young patients to “get into the frame of mind of the child and realise how it’s affecting them”. This includes being aware of how psoriasis impacts the many “little things” that are normal in other people’s lives. 

Louie used to avoid wearing dark clothes because they showed up the skin flakes.

I’ve got it all over my scalp as well which is really the real pain, yeah, because loads of people think ‘oh he’s got dandruff’ or ‘he’s got-‘ but in-, ‘he’s got this’ or ‘he’s got that’, but in actual fact it’s just psoriasis on my head and I just have to explain that to people. And with certain shampoos it does get better but it would never really go away until obviously I get rid of-, if I get rid of psoriasis. And that’s another thing – it’s stopped me wearing black clothes as much. But now, now that I’ve accepted it – I wear darker clothes like I can wear a navy top now, I don’t really care if anyone sees it because half of-, loads of the population have dandruff or this or that.

So wearing things like dark clothing – I didn’t-, I frowned away from wearing black and navy for a while because I thought ‘oh it might leave like dandruff or flakes from my scalp on my clothes’ and I just got to the point I just thought ‘really like it’s not- not that big of a deal’. But the only thing that does still affect me a little bit is my blazer at school because it’s black. I sometimes find little bits of white scalp but only little fine bits on my blazer and I just shake it off, just do it discretely, just shake it off and it doesn’t really affect me anymore. 

It was difficult for Louie to keep going back to the doctors in search of a diagnosis as his mum works full-time.

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.

Louie says the ideal is when psoriasis is managed well and he’s hopeful it won’t always be a big part of his life.

If you’ve just been diagnosed with psoriasis – just, just keep your head up high and just don’t, don’t feel sorry for yourself, although I’ve had people say that to me and it makes me upset. Just don’t feel sorry for yourself. Look, just think there will be a time when you will get better or you-, it will work for you and, or things will just work out the way you want it to work out. Maybe- you might never ever get rid of psoriasis but your psoriasis might get to a point where it’s not as obvious or it’s not-, it doesn’t restrict you in doing normal things and when you do get to that point – it is a relief and you’ve gotta keep chugging along until you get to that point. And find something that is, that you find, well find something that you find enjoyable. 

Louie says his dermatologist is understanding about the ways psoriasis affects him.

I know she’s very good at her job, Dr [dermatology doctor’s name] she’s very, very nice lady and she’s very empathetic and she’s does really know what you’re going through because obviously she’s seen it a lot of times before and she’s very good with trying to help you, specifically for me. For example my swimming, I know I told her when I first went in there that I used to swim and etcetera and she said, “My goal is to get you back swimming again,” and at the moment I’m already swimming again so she was very happy with stuff like that. And she remembered that cos I went back couple of weeks ago and I told her that I was swimming and she was over the moon that I was swimming again and obviously that made me happy and obviously she felt some sort of happiness from it, I don’t know how much but she did seem rather joyful that I could swim again comfortably and. I don’t know if she does specialise in children but she’s very good with children, adults, everyone. 

Louie fits emollients into his routine and finds using them helps his skin.

Well at the moment because I’m between treatments, I’ve finished with all the creams and all the different steroids and stuff like that. And at the moment I just use moisturiser just to keep my skin nice and smooth and not dry and it doesn’t let the psoriasis crust up as much and that is something I’d advise to anyone with psoriasis: do moisturise because it is really helpful. Find a moisturiser that’s good for you and that makes your skin feel nice and use that cos without it, it does inflame the psoriasis slightly and with me at the moment I get up, I moisturise in the morning say about, about quarter past seven then I chill in my room for about- until about half seven then I can get ready for the next half an hour before I go to school, doing obviously getting ready, washing, stuff like that. Well, I usually wash before I put cream on cos obviously that’s the normal order. And then when I get in, I usually- when I get in from school I usually like take off my school uniform, I moisturise then and then get into something a bit more comfortable like a vest and probably some boxer shorts or some shorts and just chill around the house for a bit and, yeah, that’s-. And then before I got to bed I usually have a bath and then moisturise again and then so I’m fresh for the morning and I don’t have to have, sometimes I don’t have to have a bath in the morning, I can just have a wash or a quick shower.

Louie finds there are lots of off-putting things about topical steroids. Some of these have an impact on school life for him.

I’ve had creams in the past that are like runny so when you put them on you have to give them time to dry of which when if you’re in the morning before you go to school or before you go to work if you’re a bit older – you don’t really have time to just put things on for take like 10 minutes to put things on and then 15 minutes to let it dry before you put on your work clothes or your school clothes because you’re not getting up three hours before you go to school or three hours before you go to work. Especially in my years, I’m past the years where I’m really raring to go to school, I’m at the sort of point where I’m just like ‘ahh, I’ve got to get out of bed, gotta go to school’. So I leave myself 45 minutes, half an hour, and I don’t really wanna be doing creams for 15 minutes of it then rushing to get to school, rushing to catch the bus, etcetera. And other things like creams that are sticky on your skin and they stick to your clothes and you’ve got like creams that do smell a little bit and you’ve got creams that leave like, like a shiny glaze over your skin. And you just think ‘well I can’t really explain if someone asks what that is because you don’t wanna go into detail’, like I said you don’t wanna bring attention to yourself. And so that’s another few things that doctors don’t realise and their alternatives may be a bit- a little bit better but they’re still-, most creams do take time and do take-, well, a lot of time in the morning and in the evenings when sometimes you just wanna come home and go to bed or get up in the morning and quickly go off to school.

Louie stopped using a medicated shampoo because he was worried about it drawing attention to him at school.

So I’ve had Cocois on my head which was smelly. The shampoo, Capasal – it’s a tar shampoo, tar based shampoo – that is a bit smelly as well but it’s not as bad but still it can be, people could say, “Oh, what’s that smell?” and for someone with psoriasis and you being noticed that you’ve got something wrong with you, it really does dent your confidence. And if someone asks, you don’t wanna say, “Ah, it’s me – sorry,” and you don’t wanna explain the whole story, so. When I first had psoriasis I kept myself to myself a little bit and so obviously you don’t want people asking questions.

But stuff like they gave me certain treatments for my hair like Cocois which is a smelly substance and I just said to them, “Look, if I’m going to school in the morning I’m not gonna want my hair stinking of something,” and I just stopped using it off my own back cos I don’t want to be at school and have people going, “Oh, what’s that smell?” and me having to explain. So I just stopped using that which probably if I did use it would have helped me but it’s just one of those things that I don’t think doctors realise that you have to be practical, the medicines have to help and they have to be practical with what you do in your everyday life.

Louie missed out on school classes when having phototherapy.

Did you have to take any time out from school to get to your appointments?

Yeah at some points, for example some of my light therapy was during say it was 2 o’clock and I finish at 3.15 so I would have to take the last period off to get there and get back and etcetera so I wouldn’t have to-, it wouldn’t really be a thing for me to come back in. But if you are, if you do have psoriasis and you look at it ‘oh I’m gonna get time off school, that’s great’, do not look at it like that, you need to be at school because I have missed out on quite a lot of learning because of it and now I’m feeling it a bit now because I’m having to revise and study a little bit harder than everyone else. But if you, if you do have the opportunity to do it outside of school hours go to the appointment or book appointments at that time because it is helpful to you and it should be beneficial to you. And yeah, so I did miss quite a lot of school – not a considerable amount but a little bit of school which in important years is- a little bit is worth a lot. And so I did miss a little bit like I missed afternoons, I missed first periods and I missed first like registration, I missed assemblies and stuff like that. But yeah, so I did miss quite a decent amount of school. 

Louie wanted some more phototherapy sessions for some plaques on his stomach. It was very upsetting for him when his psoriasis returned.

But I did get treated not too long ago with light treatment and I had about 24 sessions of light treatment and that actually worked. But the sad thing is once I’d finished my light treatment it was all gone apart from like one or two on my stomach and I said to the doctors, “Look, there’s still two there. I think I should keep going just so I can happily get rid of them,” because I have a theory that if I scratch –that it sort of that moves along my body but I don’t think that’s scientifically like supported or anything but that’s just my theory. So I said, “Can I like have a few more sessions to get rid of these ones on my stomach?” and obviously they said, “No,” cos they thought it was gone. And about a week later everything just started coming back. And obviously that was a very hard time for me because I thought I’d got past it but then it felt like I’d just been dragged back into like a deep hole of psoriasis – if you would, if you would say that. And that I got really quite depressed and that was at the wrong time because that was just before my mock exams going into in Year 10 and obviously than did sort of hinder my mental state a little bit as in I was depressed, I didn’t wanna go out, I didn’t want to revise.

Louie talks about having friends to stay over and staying at other people’s houses.

Having like dark sheets on my bed, like I wake up to like little flakes from my head on my bed and obviously it’s a bit of a pain but. Something that really works is me just getting a hairdryer and just getting it off and I know it sounds stupid but it does help. And like say if I’m having friends over or a girlfriend over, I do have different coloured sheets just in case so I can put them on so if I do have them round I don’t look-, well they don’t see flakes on my bed. 

What about if you were staying over at somebody else’s house or if you’re going away for a weekend on a trip or a holiday?

That’s still quite a-, well not big issue but it’s a little issue, I do take pillows of which do have a white colour or a light colour of which you can’t see flaky, flakes on my skin or my scalp on it and so obviously I don’t get asked question and stuff like that. And I do make sure, I know it sounds weird but to someone with psoriasis you do sort of make sure where you sleep or where, where you’re staying is, is suitable. So for example say if you’re staying on a sofa and the sofa is a leather sofa – I do-, I don’t do it on purpose but if I do wake up before anyone else, I do brush things onto the floor and stuff like that. Just to make sure people don’t ask questions and I feel bad obviously if it’s someone else’s house that I’ve done that but it’s something that I can’t control and it’s just one of those things I’ve just learnt to live with. And yeah, that’s it really, so I do take my own pillow when I go to places but that’s probably about it, or I take my own sheets for a pillow when I go to places.

Louie didn’t like it at first when his mum would look online about psoriasis.

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.

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.

Louie removed photos from his Instagram account which had been taken before he developed psoriasis.

I don’t talk about psoriasis on social media cos I don’t-, it’s not one of those things. I’m-, just something I just don’t do and I don’t-, I stopped. I don’t know if you’ve heard of Instagram? Which is a photo site and you send photos etcetera, well you have a photo wall and you have your different photos. I do not post on Instagram anymore because, maybe because of my psoriasis or maybe just because of my lack of confidence but I got that lack of confidence because of psoriasis. Whereas before I did have about 20 pictures on there 20, 15 pictures on there that I did-, but I took them all down rather quickly ever since I got psoriasis because I didn’t want people to see me before and then look at me now and say, “Oh, like what’s happened?” sort of thing. So I just sort of just-, I keep it open cos I like looking at other people’s pictures but I have cut all my pictures and stuff like that and I don’t really use social media as much but I still am quite-, I still do use social media still quite a lot but not in, not in relation with other people that are on it 24/7.

Louie’s unsure about the social life at university and how psoriasis symptoms and emotional impacts might affect it.

I am planning to go to university at some point because I’m quite an academic person but at first I was thinking ‘oh no, how am I supposed to fit in with uni life when I have psoriasis and I can’t go out clubbing, partying etcetera?’ and obviously that’s not what uni’s for but you do think about it when you’re thinking about uni. And I was thinking ‘arr no, that’s going to affect, that’s going to affect me’. But in actual fact there’s loads of other people out there that probably do have psoriasis and there’s loads of people out there that have problems and little things that do get on their mind and do bother them, but at the end there is always that one or two people that will accept you for who you are and they will embrace you as a person and it won’t really matter to them that you’ve got psoriasis or that you’ve got eczema, you’ve got anything like that. It won’t matter to them and they will accept you for who you are. And so I did think about that when I was thinking about going to university or college or sixth form etcetera and that did play on my mind but it doesn’t really affect me anymore.