Abbie

Age at interview: 20

Age at diagnosis: 10

Brief Outline: Abbie was diagnosed with psoriasis at age 10. She recently finished a course of phototherapy which she found very effective. Abbie tries to remember that other people often don’t realise the negative impact that their comments about psoriasis can have.

Background: Abbie, aged 20, is an activity team leader. Her ethnic background is White English.

More about me...

Abbie was diagnosed with psoriasis at the age of 10, a condition which runs in her family. She has had patches of psoriasis on her knees, elbows, scalp, ears, and legs. She has found that stress and some foods trigger her psoriasis. She tries to keep her stress level down and avoid eating certain foods such as beef, tomatoes, dairy, and oranges. She has read about people’s experiences with psoriasis and searched for natural remedies online. However, some of the suggestions online conflicted with the views of her doctors. Abbie finds that her psoriasis can be itchy; she tries to keep scratching to a minimum by using anti-itch creams, taking anti-histamines, and keeping her bedding/clothing clean. 

Abbie has tried a variety of treatments from her GP, such as steroid creams, steroid ointments, medicated bubble baths, cradle cap shampoo and petroleum jelly. Although some of these treatments were effective initially, she finds that they stop working with time. After two years of trial-and-error with her GP, she was referred to a dermatologist because the psoriasis on her scalp got worse. The treatment she was given at the dermatology clinic involved applying medication to her scalp and letting it sink in for a few hours before removing it. Abbie describes being “fed up” with ineffective treatments, and her dermatologist eventually gave her a referral for 30 phototherapy sessions. She finished phototherapy a few months ago and found it to be very effective for her psoriasis. Attending the phototherapy appointments twice a week was tiring because they were scheduled on her days off from work, but she says the results were worth the effort. 

Abbie finds that healthcare professionals generally do not address the emotional side of having a skin condition. She notes that questionnaires given at specialist clinics do not fully capture the experience of living with psoriasis because their time frames are too short (e.g. one month) and don’t take account of seasons. She says that young females tend to be particularly conscious of their appearance and identity, and may therefore struggle more with a skin condition. She prefers to keep the emotional side of psoriasis to herself, although she has talked to a few close people in her life. She found it easier to talk about her psoriasis once her skin had improved. Other people have commented on Abbie’s psoriasis and she feels that they do not understand the impact and upset that those comments can have on someone with psoriasis. Abbie’s advice to young people with psoriasis is to consult healthcare professionals like GPs and dermatologists and to be open to trying new treatment options. She encourages young people to “stand their ground” in medical consultations and not agree to repeating an ineffective treatment. Abbie’s advice to healthcare professionals treating young people with psoriasis is to be more empathetic and to acknowledge the effects of psoriasis on a young person. 

Abbie says scratching is “the worst thing to do” for psoriasis, but can give some relief.

Like a lot of the time I'd be really itchy especially like during the night. If I wasn’t quite comfortable, or it was hot, I'd feel itchy and I'd wake up and I'd sit and itch to the point that I'd make my legs bleed, or I'd scratch my scalp so much that I'd make my scalp bleed. And it was always the worst thing to do but it always had that, that sensation that it was nice to have that, just a relief there although it was almost just annoying because afterwards, well you make it bleed, then you make it worse.

And then yeah, but then you have to be careful because a lot of creams that you use afterwards it does make it -, it makes it worse, so like my, the top of my ears that was always quite thick and horrible, and I would sit there and I'd sit and pick it because I could, because it was there.

And that’s kind of result of it, it’s like, 'Oh I shouldn’t do this,' but there's that relief of just being able to scratch it and itch it, and it not feeling as thick and heavy. 

Abbie feels some kinds of stinging might be a sign it’s clearing her psoriasis.

And then hair dye – I did like to dye my hair and I've gone from like bleach blonde and stuff before, doing it on my own, and when it was in a worser state that the hair dye would sting a lot but I'd still do it as much as it hurt. And but then I felt like, 'Oh well, well it's, it's stinging in, it's like burning on it a little bit but it's gonna get rid of it,' and that was like a theory in my head. I don’t think it did help, I just kind of ignored it, but I like to dye my hair but -.

Like it's burning it away, and maybe if I'm doing this and then it's just gonna ease it. I don’t know, it was a really -, it's a really weird thought but like the sensation of it, even though it stings a little bit, it's, it's nice.

It's really bizarre.

Abbie talks about the body parts affected, such as her legs where she gets big psoriasis plaques.

So when I was younger it mostly just affected my knees a little bit, my elbows and mostly my scalp, and that was the worst part especially around my ears and around the bottom which obviously wasn’t the nicest, and then that kind of cleared up. Mostly a lot I get around my ears and in my ears and then elbows, they tend to get it quite a lot, and then I've had it on my legs quite a lot, so from top to bottom, but in bigger patches, and my knees.

It's also when you get big patches on different parts of your skin was the hardest to be able to tackle cos my leg, over the last one or two years, it was the biggest cos it went from my knee down to about my ankle, and that was just one straight patch down. So that was the more difficult one to be able to treat cos as much as I'd moisturise it, it was so big you couldn’t -, trying to see the difference in it or when it would go down it wasn’t -, you couldn’t really tell.

Abbie’s job means being outdoors a lot in the summer but she wasn’t confident showing psoriasis on her legs.

Especially working here, especially being outside we’d…it's easier to wear shorts in the summer especially when it's really warm, but I'd always try and avoid wearing shorts and go for trousers just because I feel comfortable, more comfortable, than having to get my legs out especially going out in dresses. I didn’t really want that – I'd have to make sure I wore tights but I'd still feel conscious that you could see it. And I've even had, when I've -, it's been so hot working over the last few years and I've had to wear shorts working with smaller children and they ask you questions about it and it just doesn’t really feel the greatest and then like with my sister's wedding she wanted short bridesmaids dresses but I told her that I wouldn’t and I couldn’t wear one. Obviously it's now cleared which meant we could have worn one but I told her no I wouldn’t because I didn’t wanna look like that, have my legs out doing wedding photos or anything like that.

Abbie’s dermatologist talked to her about triggers like stress and suggested some foods to cut out.

The only main thing that I've always been told is like stress, and because when I was at high school, my first high school I went to, I didn’t really enjoy it which was why I had the IBS as well from the anxiety which then, they put that down to why it got worse as well, just being stressed out. And then when I saw the consultant this year they mentioned -, cos everyone's really said about stress and she mentioned again, "What's work like; how is it?" and I said, "look what I do is busy," so they did mention the stress. And then she also mentioned about different foods that can be triggers, so she give me so many to eliminate - so I don’t eat beef, don’t eat tomatoes, don’t eat dairy and I don’t eat oranges. And although when I've cut -, I cut them out pretty much completely for the first month and a half or so, because I was doing phototherapy I didn’t really see much of a difference, whereas now because obviously I have my food all cooked for me, I still eliminate it but every now and then I will have naughty days, and I will eat some of those foods and I'll go have a burger, I’ll go drink proper milk, cos I drink goat's milk.

And see, but I haven’t seen any effect that these, what I'm eating every now and then, it's flaring up my skin so I'm just every now and then I eat it in smaller doses just in case.

Abbie talks about the medical help she had when she was younger.

Could I ask what the first appointment with the GP about psoriasis was like?

I can't really remember it because it was so long ago but obviously Mum took me in and they just give me steroid creams. I think it started off with the same that my dad had, just cos obviously he'd used it for so many years; then just over time that didn’t work so I was going back and forwards being given different steroid creams just to try until I got referred to go to a dermatologist, and that was mostly because of my scalp and because of the state that it was in where I had to go and have special treatment a few times a month where I'd sit there and they'd put in the cream. I'd have to sit there for a few hours while it settled in, then they'd have to sit and just scrape out all the loose bits. 

Abbie says the survey questions aren’t always the ‘right’ ones to find out about the impact of psoriasis on her life.

So, when I had to go and see the consultant you have to fill like a little questionnaire out, and it always says about –. But the thing being when they do these questionnaires but they relate it to the last month, or the last week, and some of these questions don’t actually relate to in the last week. Like, ‘has it ever affected what you're wearing?’ Well when I went and saw her it was in the winter. So no, it didn’t affect what I was wearing because I'm gonna wear long sleeves anyway, whereas if it was in the summer, yes it would because I wouldn’t wanna wear skirts; I wouldn’t wanna wear shorts. And it's just those things that they don’t really think about. Like when I did see her and she first went and told me that, "Oh OK, we need to try some steroid creams," I broke down in tears in front of her because I said, "No, I’ve tried this for the last ten years and nothing has worked." And it's even like she didn’t really relate to it and she's like, "Well your psoriasis isn't that bad, you - ," and I was just like, "You might have seen the worst cases, but to me this is really not helping me," and that did bring me down a lot when I first saw that consultant this year. 

The cost of trying prescribed topical treatments added up for Abbie.

For most of it, cos I was a lot younger, it was OK I, cos I could get my prescriptions for free. But as I got older, when you're getting the, the prescriptions it does kind of add up depending on which ones you're having because, depending on how much they prescribe you, depending on how much you're having to use because of how much psoriasis you’ve got, also then depends on how often you're having to go back and get the repeat prescription and it does, the price builds up over time having to get it, which is why I did kind of just stop using any prescription and I'd buy just moisturisers, and I would try and see how that worked. But it's just, it's just a pain as well of having to go back to doctors and make sure you’d got that repeat prescription, or if it's not working, have to go back and try another cream, and if that doesn’t work you have to go back and get prescribed another cream in a few weeks and it just kind of builds up, and it's just back and forward, back and forward from the doctors.

Which can be an absolute pain over time.

Abbie’s tried lots of topical steroids without improvement. Her dermatologist wanted her to try more but Abbie pushed for phototherapy.

And what happened after that? Did they suggest different treatments than steroids?

Well it was when I mentioned to her that I said that I wasn’t gonna try creams, and that’s when she turned to me and said, "Well, obviously the phototherapy, it probably won't work; it doesn’t work on everybody and we'd always try these creams first before we do the phototherapy," but she put me forward it for anyway and I was like, "Well if you say it's not gonna work is there any point in me doing it?" She was, "Well it's up to you," which didn’t really help me. So I did it anyway and then I had to go and see her not long ago and I was like, "Look, it's all cleared now." So it was kind of like, 'Aha to you,' but the way she made me feel that day wasn’t like the most positive cos I've, I told her that I'd tried everything, like even when I got referred by my doctor over winter he'd looked at the previous, my previous medical – everything that I'd been given for it and it was pretty much all steroids that could have been given, or creams, I tried over the last ten years.

Which is why I got referred.

Abbie found phototherapy helped her skin but going for sessions was tiring.

Like at first it's like I'm only coming up here and the, I think my first treatment was like forty seconds that I was stood in the sunbed and it's like am I actually drive, cos I had to drive twenty minutes to the local hospital. Twice a week is a bit long, and it was ‘am I really coming up here for one minute or whatever to stand in-’, but over time it did get to about four minutes which is a little bit longer, but a lot of the appointments as well cos they were always morning appointments; like it just tired me out cos every time it was… worked out on my days off whenever I was on a late shift, so therefore I had the morning off, so I had to be up early to be able to drive up to go and do it. So it did kind of exhaust me over time especially with being busy at work and just made me so tired, but at the same time it was helping me so it was a bit of swings and roundabouts to, 'I want to go but I don’t want to go cos I'm tired,' but yeah it helped. 

Abbie noticed her skin became pink after her phototherapy sessions increased, especially when she had been working outdoors. She found using after-sun helped.

Usually afterwards, especially once you’ve, your dosage has gone up so you're going longer and you can start to feel the heat especially in there. I do go slightly pink in places mostly in my face and my arms and maybe my tummy especially when, whilst I was doing it recently we've had the nice hot weather, so working outside most days going out I'd end up by the end of the evening with a completely pink face feeling ridiculously hot because I've just gone up in treatment; I've been out in the sun so it's just making sure that always put on sun cream afterwards if I was gonna be on it, out in the sun, just to kind of prevent anything else happening, but it was only really go pink for a few hours. 

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

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

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

How did you deal with that situation?

I just kind of battled through the work but when I get home it's just like, 'No, I've had one of those bad days and I just can't do it.' Usually end up, went to the bar [laughs] and just sat with just even people that I knew and just had a drink just to, just need to calm down cos it's not really one of the things that I [sniffed] enjoyed.

Abbie’s dermatologist talked to her about triggers like stress and suggested some foods to cut out.

The only main thing that I've always been told is like stress, and because when I was at high school, my first high school I went to, I didn’t really enjoy it which was why I had the IBS as well from the anxiety which then, they put that down to why it got worse as well, just being stressed out. And then when I saw the consultant this year they mentioned - , cos everyone's really said about stress and she mentioned again, "What's work like; how is it?" and I said, "look what I do is busy," so they did mention the stress. And then she also mentioned about different foods that can be triggers, so she give me so many to eliminate - so I don’t eat beef, don’t eat tomatoes, don’t eat dairy and I don’t eat oranges. And although when I've cut them out pretty much completely for the first month and a half or so, because I was doing phototherapy I didn’t really see much of a difference, whereas now because obviously I have my food all cooked for me, I still eliminate it but every now and then I will have naughty days, and I will eat some of those foods and I'll go have a burger, I’ll go drink proper milk, cos I drink goat's milk.

And see, but I haven’t seen any effect that these, what I'm eating every now and then, it's flaring up my skin so I'm just every now and then I eat it in smaller doses just in case.

Abbie talks about how she manages her itchy skin at night so that she can sleep better.

I use like itch relief creams and antihistamines. I took those quite a lot just to prevent it a little bit and just making sure that before bed to have a shower, have a bath – just make your skin feel a little bit clear, and just changing the bed constantly as well just so it's nice and clean, and just not feeling as - , just like clogged up.  I like wearing like leggings and like pyjamas that I'd wear to bed – I'd wear my leggings types, just cos they felt tighter on my skin, therefore there wasn’t that looseness of like pyjamas just moving around and making it a little bit itchy, so that helped me just feel a little bit comfortable.

Abbie’s dad has psoriasis but she thinks that because is older and married their experiences with it are quite different.

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.

Abbie talked to her partner about her psoriasis when she started phototherapy.

Well I just kind of -, I've only really mentioned it a few times for some relationships; some people just haven’t really asked but it was more someone that didn’t really ask much questions anyway, whereas like the relationship that I'm in now I did mention to him at the start of the year, cos obviously I had to say that I've got hospital appointments and he's like, "Why have you got hospital appointments?" So, I had to go in a little bit more detail but he's been really supportive over it and he'll always be like, "Oh it's getting better, you can see how much difference it has made," and he has been really supportive over it. But just in past, just one of those things I've just kind of avoided talking about, it, it's there; I've just got bad skin and that is it.

And just kind of left it.

Abbie worries about other people noticing her psoriasis.

I feel that because being female and having it and especially some places, females can be a lot more conscious and we do like to hide a lot of things. Especially having like , like friends and wanting to be in a good friendship group and males and want -, at this age wanting to get relationships and stuff, that it can be a little bit, 'Oh well I don’t wanna be able to show this cos people might see me and be like, "Oh what, what's going on?"’ So, I was like always conscious of that which is why I'd like to cover up and sometimes I got -, I did get like a small patch on my eyebrow so I'd always make sure that I wore, I wore make-up to try and draw attention to that. I don’t bother wearing make-up much anymore but I'd always just make sure that I'd -, if I wore make-up then I'd look nice.

And I'm always one of those that I'd always wear nice clothes so that people didn’t feel -, I'd look nice and it kind of just draws it away a little bit, and it'll draw my attention away from it especially if I'm going out to new places, meeting new people.