Carys

Age at interview: 23

Age at diagnosis: 22

Brief Outline: (Text only clips) Carys had plaque psoriasis when she was 22. It took a long time for her to be correctly diagnosed, by which time a lot of her body was affected. Having psoriasis had a big impact on Carys’ confidence and social life as well in her job as a hospital nurse.

Background: Carys is 23, married and a hospital nurse. Her ethnicity is White British.

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Carys developed plaque psoriasis when she was 22. Her psoriasis was itchy, flaky and would sometimes crack open, especially when she was moving around a lot at work. Her first patch developed on her leg after nicking the skin whilst shaving. She became concerned when the mark wouldn’t heal and so went to her GP, who thought she might have ringworm and prescribed her antifungal creams. She continued going back to her GP as patches kept cropping up elsewhere on her body. Eventually Carys saw a dermatologist who instantly recognised it as psoriasis. At this stage, Carys had psoriasis on her scalp, face, neck, hands, stomach, back, legs and feet. Having psoriasis on her scalp meant that she sometimes caught the plaques when brushing her hair, which was painful and caused clumps of hair to fall out. Since completing a course of phototherapy treatment course several months ago, Carys hasn’t had any psoriasis return. She thinks that her psoriasis developed due to a combination of triggers: stress with starting a new job, having a cold and the shaving cut. She tries to avoid stress but finds it’s very hard to do so at work.

Getting a diagnosis of psoriasis was quite a frustrating process for Carys. She went back to her GP multiple times when it was thought that she had ringworm for stronger anti-fungal treatments. In contrast, her dermatologist instantly diagnosed her with having psoriasis on the first visit. Carys was upset that her psoriasis was too severe for other treatment options and that she would need phototherapy. Because of the long wait for the treatment, Carys ended up getting a quicker referral through Occupational Health at her work. In the meantime, she used emollients and was given a soap replacement for washing her hands as well as Oilatum bath oil. All the prescriptions, and water bill with daily baths with bath oil, were very costly. Using the creams helped but could be very time-consuming, uncomfortable (greasy) and got on her clothes and bedsheets, creating lots of laundry. Carys was worried about the increase in risks of skin cancer with phototherapy but felt that trying it was the right decision for her. Having pale skin meant that she couldn’t have phototherapy sessions in quick succession and she found that her skin would become quite red and uncomfortable afterwards. The dermatology department was very supportive and tried to fit appointments around her work shifts. She had phototherapy for a few weeks, alongside using the prescribed emollients and a shop-bought scrub to give some relief to the itchiness of her skin.

Having psoriasis really knocked Carys’ confidence. She says that it was very hard going out and socialising. She struggled to find outfits which covered up the psoriasis and being unable to shave made her feel less confident going out. Carys tended to stick with cotton leggings and floaty tops at home to avoid irritating the skin. She wore make-up at work to boost her confidence because it made her skin look less red but she says the dryness was still visible. Having psoriasis on her arms and hands was particularly hard for Carys because being a nurse means that she has to wash her hands frequently and she wouldn’t get a chance to use the moisturisers with such long shifts. Although her medically-trained colleagues understood about the condition, Carys found that some patients thought it might be contagious (spreading). She couldn’t wear the nurse uniform because the fabric irritated her skin and this made Carys feel like she didn’t “look the part”. Having broken skin on her arms was a concern because of infection risks to both herself and others. Carys found it hard to sleep when it was hot as her skin would become very itchy. She has pre-existing joint problems, which are unrelated to psoriasis, so she says that she’s used to being kept awake. Putting creams on her skin before bed could also be uncomfortable and she would sometimes scratch in her sleep, waking up to find spots of blood on the sheets. To reduce the damage to the skin, she took to wearing cotton gloves. 

Carys encourages other young people with psoriasis to try and keep on top of the symptoms. She adds that if things aren’t improving, to push their doctors for more treatments to try. She says that talking to someone else about the emotional impact of psoriasis can help. Carys says that it helped talking to her family, especially her mum, and that her partner and best friend were both really supportive. She used social media to vent her feelings sometimes. Given her difficult experiences with getting diagnosed, Carys thinks it would be good for GPs to have more knowledge about skin conditions. She thinks that getting a diagnosis sooner could have prevented her psoriasis becoming so severe and requiring phototherapy. Her advice to dermatology professionals is to be more understanding of why people might try shop-bought products (in addition to prescribed treatments), since the itchiness and flaking of psoriasis can be very hard to cope with.

Carys saw her GP several times before seeing a dermatologist who quickly diagnosed it. She then had a wait before starting phototherapy treatment.

I was covered in psoriasis and all I wanted was some relief from it. And I, and I had to wait and although that makes me sound really impatient, I think I was like I’d waited so long to get a diagnosis or it felt like so long to get a diagnosis and then it took 30 seconds to diagnose, but then being told you have to wait another six weeks for treatment was quite like frustrating in a way. Cos by the time my treatment came some of the plaques had started to go. I mean, I was still covered, but there was the ones that were starting to fade, but obviously if I hadn’t not had the phototherapy I think it would have took probably the same length of time to get rid of it. I think I would have been covered for probably three more months or something. 

Carys found it hardest to have psoriasis on her hands because her job as a nurse meant that she was using/washing them constantly and that they were an infection risk.

With me, my arms and my hands were difficult because I washed my hands so frequently at work that you would-, say you had four days off in between shifts, you would get it looking really, you know, feeling better and looking less angry and then you go back and you’d undo it within a few hours because you’ve washed your hands that many times, that there’s absolutely no way that you could keep them looking as good. 

Because I’d plaques on my hands and my wrists and things and that some of them broke open and at the time I didn’t, didn’t realise, but when I saw Occupational Health after all my treatment, they said that I shouldn’t have been working at that point. But, as soon as the plaques broke open on any of my skin that was like bare below the elbows that’s the NHS rules, they said I should have been off sick because I was an infection risk to myself and somebody else at that point. But I didn’t realise and to be honest didn’t think anything of it, because, because my, I didn’t have an infection. I didn’t think about it, about- which obviously didn’t sit well, cos I wouldn’t wanna put anybody at risk but I didn’t actually get any infections or anything. But I know for next time that if I was to get it again and they were to break open I’d have to be off if it was on my hands or on my arms broken. Cos my hand washing just made it worse like you know, you can’t help it. You have to wash your hands every five minutes. So the ones on my hands just never-, were probably open a lot of the time really when I think back. 

Carys’ psoriasis was triggered by a combination of factors, including catching her skin while shaving.

They said what they think what was my trigger was that I’d nicked myself with my razor and I was in a new job as they said that the combination of it being winter so I probably had a cold and I nicked my leg and then so my immune symptom was a bit lower and combined with the stress of a new job on a fast paced environment just-, they said that just my body just didn’t know what to do and it just sent out a control. So it’s, you know, I understand not trying to get stressed and things and I probably have learnt to deal with it better. But it’s easier said than done in my job and sometimes you can’t help but get stressed. And so I just try and avoid it as best I can and when I feel stressed after a day, I try and de-stress myself because I don’t want it to come back if I can avoid it.

Occupational Health at Carys’ workplace helped her see a dermatologist quicker, as her psoriasis was impacting on her job as a nurse.

I was referred to dermatology at the hospital and I was seen within a few weeks, so the process was a lot quicker going through Occupational Health which surprised me, actually. Didn’t expect it to [laughs].

Do you know how long you would have had to have waited otherwise to see a dermatologist?

I think my appointment probably came through about six weeks after the original appointment in the community with dermatologists. Cos they, yeah, they said it wouldn’t be till the Christmas and the New Year or actually yeah, cos I saw on Facebook, well you know, you ‘go back in time’ thing. And it said-, I’d put a status on saying that I needed phototherapy but that I wouldn’t get it till the New Year and that was this week, so it was probably a good six weeks that I was probably waiting for the appointment. And I’d got the letter asking me to go when I, the day after I’d had my first session of phototherapy at the hospital so it was quite a wait, so I think it’s one of those things that’s probably in quite high demand but not a lot of people can do it.

Carys tried a body scrub to help reduce skin flaking and itchiness. The dermatology nurse she told about this was dismissive.

So my friend worked at Lush and I read in a magazine that somebody with psoriasis had used something called Angels On Bare Skin, I think. And I was like, I read it and it said, “It worked wonders for my psoriasis,” and I was grasping at straws by this point. So, I was like, “Oh, I’ll try that.” And I mean it, I got that and at that, that did actually help it. It was just like a natural like body scrub but it meant I could almost itch without causing any damage. So, and you could use it on a daily basis. So that was quite, quite a good one and it, like I say, cos it’s all natural and it has things in to help calm the skin down. It did, I found it helped. And I, when I told the dermatology nurse this, she just rolled her eyes at me and I was like, “Well you asked me what I’d used.” I said, “And I’ve been waiting for months.” I said, “I was grasping at straws by this point.” But I felt like it helped to, I didn’t like to replace my prescribed ones, but it, I added it in. So, like I say, I saw like that it worked and I have to agree I think for symptom relief it did, it did help. Like I say, it was like being able to itch without itching. 

Why do you think that the dermatology nurse had that reaction of rolling her eyes?

[Intake of breath] Probably cos she hears it all the time about, “Oh I used this and it worked wonders.” And I don’t and I never once said I think it was a treatment. I used it as symptom relief and I was fully aware that’s what I was using it for. And I think sometimes people are set in their ways and that in this, in that profession you think it should be prescribed and it should be you should follow, you know, prescribed medicines and things like that. But, she probably just thought ‘oh, you’ve been wasting your money’ or you know, ‘nothing’s gonna get rid of it.’ But like I say, I never used it to get rid of it. I used it as symptom relief and I told her that and I was like, “Well, if it helps it helps. I’m not-,” and like and I said to her I said, “And at the end of day, even if it was psychosomatic and all in me head, if it gave me symptom relief it gave me symptom relief.” 

Carys struggled to fit in using emollients with shift work as a nurse.

So, at home I had the Oilatum and I had Doublebase cream which although it made me feel really oily, it did help. So when I mentioned this when I was having my phototherapy sessions, they gave me little sample bottles of Dermol, which I could use as a soap replacement and as a moisturiser while I was on the ward. So it meant I was able to keep topping up with moisturisers throughout the day, even at work. Cos, you know, cos I work 12 hours and the environment’s, the heating’s always on or, you know, it’s not a very good probably, it’s not a good environment for your skin, really. I would sometimes go 12 hours without putting anything on my plaques, which probably didn’t help but you know, it couldn’t be helped either. Like I had to work, so those little bottles at least meant that my hands and my arms were kept from getting any worse, because of the continual hand washing.

It was more just the time that it took and with me being a shift worker, having to add that into my day when I worked 12 hours was quite difficult because it would-, sometimes like I’d have to soak in the Oilatum and then put my creams on and all this and it would take upwards of an hour. And when you’ve worked 12 hours it’s the last thing on your mind. You just wanna go to bed, but when you’re covered like that and you can’t sleep with it, cos it’s irritating you, you have to do it. But I was lucky I didn’t react to any creams or anything. 

Carys’ water bills were high when she used a bath oil/emollient daily.

And although it sounds ridiculous, if you’re having a bath every day your water bill goes through the roof [laughs] because I was having to bath every day. Again it wasn’t, it was just for symptom relief like. And then they didn’t, they didn’t give me anything for a shower. I only had Oilatum for a long time. So I ended up having to bath just to, to kind of keep clean, cos I couldn’t use regular soaps, cos it irritated me. So I ended up going back to the GP again and asking for like something like a shower gel. So then I didn’t have to have a bath every day, but I could only really maybe skip one bath because the bath, you know, you soak in it and it did do, it was better. 

Carys found the bath oil/emollient made her skin feel greasy. She washed out the bath as it made the surface slippery.

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.

Carys’ phototherapy sessions were scheduled around her work shifts.

They were so accommodating of the fact that I worked shifts. I was a little bit more difficult because I’m so pale skinned, I couldn’t do two consecutive days whereas other people can. But I couldn’t so they, but they were really, really accommodating of my shifts and so was my work, because I work at the hospital I would pop off my shifts and just go get it and then come back. If I was on night shifts they would either give me the first appointment of the day or the last appointment of the day to try and make it easier for me to get there and back and not have to break up my sleep just to go get a five minute session, cos it’s so quick, they were like, “Seems a bit unfair to make you come all the way.” But, like I say, it was, work were really good with it, cos they would just let me off. If I was on day shifts I would just pop off the ward. Everyone was just going, “We have to work and you’re popping off for a sun bed.”

[Laughs]

So it was, like I say, I can’t fault my work for the way they helped me and like I say, but it was, it was alright. And it was, like I say, it was dead quick, dead easy and by the end like I say, they just-, if I was ever late, because I was on shift or whatnot they were really good about it, so.

Carys weighed up the risks and benefits before deciding to try phototherapy.

It’s one of those things that when they told you about side effects, you’re like ‘oh no’, cos I never use sun beds or anything like that. So, to be told, you know, “You are increasing your risk of skin cancer.” That was not a nice thing. But when, you know, you have to listen to the facts and use your sensible head at that point and kind of weigh out the pros and the cons and I thought ‘well, there’s a chance that psoriasis may never come back’. And if it was to come back that I would spot the plaque and I would be able to say, “Right, I need to start my treatment again.” So I was like ‘well I better just, just do it.’

The impact of psoriasis on Carys’ confidence was hard on her parents.

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.