Lisa

Age at interview: 20

Age at diagnosis: 11

Brief Outline:

Lisa was officially diagnosed at age 11. She has used steroid creams and phototherapy (light therapy) when she was younger. After the age of 18, she was allowed by her doctors to try cyclosporine, Fumaderm and methotrexate.

Background:

Lisa is 20 years old and a university student. Her ethnicity is White English.

More about me...

Lisa has had psoriasis for as long as she can remember. She was removed from nursery school at age 3 with suspected chickenpox when patches of psoriasis were first noticed. It was then thought that she had eczema. Lisa was 11 years old when she was diagnosed with having psoriasis; she felt relieved to finally have an explanation for her symptoms. Lisa has guttate psoriasis, which can be bumpy, on the tops of her legs and stomach most of the time. Shaving her legs can be very difficult, as the skin tends to bleed a lot and become very sore, so she prefers to use hair removal creams. Stress is a major trigger for Lisa’s psoriasis. She also knows that injuries to the skin can cause patches to develop. Lisa had heard that diet, especially carbohydrates, can be triggers but has not found this to be the case for her. One thing Lisa finds helpful when her psoriasis is very itchy and inflamed is to make the room she’s in as cool as possible. She finds that skin flaking can be difficult to deal with and she uses a lint roller to remove these from her clothes.

Up to the age of 18, Lisa had tried steroids creams and light therapy for her psoriasis. However, she didn’t find the steroid creams helpful, just very smelly and time-consuming to apply, and her psoriasis returned soon after finishing light therapy. Lisa knew about other treatments from researching online; however, her GP refused to let her try any of these. Even once she had turned 18, Lisa feels she had to struggle to get the treatments that she wanted. She has since had cyclosporine and methotrexate, both immunosuppressant tablets, and Fumaderm. Cyclosporine and her current medication, methotrexate, have worked well. However, Lisa had to stop taking Fumaderm because of side effects, such as hot flushes and headaches. She also struggled remembering to take the Fumaderm tablets, as they had to be spaced throughout the day around mealtimes. Lisa has also asked her doctor about biologic injections but has been told that she’s not yet eligible. Lisa prefers to go to dermatology appointments on her own as she finds it’s less awkward to talk without her parents there.

Lisa says that psoriasis first began to negatively impact her self-confidence around the age of 15. She remembers that her PE school teachers weren’t very understanding and so she would write herself sick notes so that she didn’t have to take part or change in front of the other students. Lisa’s self-confidence was also knocked when she moved abroad for a year, meaning she had to stop treatment, and her psoriasis flared up quite severely. Psoriasis affects Lisa’s clothing choices, as she prefers to cover up and she worries about skin flakes visible on dark fabrics. She avoids wearing foundation as she finds it “congeals” on the dry skin on her face. 

Lisa is part of an online discussion group about psoriasis. She finds it helpful to learn about home remedy treatments, especially when she’s not due to see a dermatologist for some time. Looking online for information about psoriasis has not always been helpful for Lisa though. For example, she remembers seeing gory photographs of severe psoriasis online when she was younger which frightened her. She also used her university library to look up medical research on psoriasis but found it confusing. In terms of emotional support, Lisa says that her boyfriend is very understanding. Lisa knows about psoriatic arthritis, as her dad has this, and she is unsure if this will affect her in the future.

Lisa encourages other young people with psoriasis to see a dermatologist, even if this involves persisting with your GP to get a referral. She adds that healthcare professionals should be aware that rejecting a patient’s request for a particular treatment can be upsetting, and suggests that they should also offer emotional support. Lisa emphasises the importance of finding a successful treatment as she has found that her confidence is boosted when her psoriasis is under control.

Lisa has guttate psoriasis. Although the patches are small, she has them all over her body and finds they show through some of her clothes.

It affects everywhere, except for my face, I don’t normally get it on my face, but as I’ve gotten older, I sometimes do. But they’ve given me creams for my face, so after a few days it goes away.

For mine it’s just the guttate psoriasis, so it’s just little patches everywhere. It’s in-, it’s really bumpy and you can sort of see it if I wear like leggings for example. And at the beginning it’s really flaky. So if I wear leggings, I’d and I move around, you’d get white patches, like white flakes everywhere. And I know, even on the treatments, I still get that. So, my room is just covered in what looks like dust, but I know it’s skin, which is disgusting [laughs]. But, yeah. 

Does it ever get itchy or sore?

Yeah, quite a lot, especially if it’s rubbing against something.

Lisa prefers if her parents aren’t at her medical appointment.

With your hospital appointments and your dermatology appointments would you tend to go to those with a parent?

No, normally I go by myself. My mum did come with me once, but I, I find it awkward to talk about it when they’re there, because they sort of butt in and it’s a bit really awkward, so I try and go alone. 

At what age do you think you started going to appointments on your own?

From about 16 cos I didn’t-, I don’t really like talking about problems if my parents are there because then they’ll be like, “Oh, you didn’t tell me that.” And I’d just be like ‘yeah, I didn’t want to tell you that’. So yeah. 

Were they okay about when you told them that you’d rather be on your own?

Yeah, they-, they were fine about it. 

Lisa talks about her experience of phototherapy.

And then could you tell me a bit about the light therapy treatment and how you had to do that treatment?

Yeah, I had to go three times a week normally Monday, Wednesday and Friday. In the morning, before school you’d just be in like a room where you’ve got machines around you. It’s a bit like a stand up light bed. And you’d wear goggles because it was ultraviolet lights. And you’d stand in your underwear so that you can get your skin and you’d be in there for about ten minutes and you’d do that three times a week until it helps. 

Did you ever have any sunburn or side effects from the light therapy?

No, no, because they because I was young they didn’t give me a very high dose. So, it was gradual.

Lisa talks about having blood tests whilst taking systemic medicines for psoriasis.

I think it’s because they can cause complications. I know there’s-, the-, all of them that I’ve been on, they can cause something with your liver, they can cause like blood count issues blood pressure issues. So they don’t really like giving them to children. 

Do you have any sort of check-ups to keep an eye on it?

Yeah, at the beginning you have a lot of blood tests to make sure that your blood count and your kidney functions and things like that are working in order. And then as you get- , as you become on them more you don’t have to have the blood tests as regularly, but you still have to just in case especially with the methotrexate that I’m on since it was used initially for cancer, I have to make sure that I don’t take medication like ibuprofen that can interact with it. I think it’s ibuprofen, but I can’t take things like will interact with it and I have to keep a little book so that they know like my blood pressure or my white blood counts and things like that. 

Lisa thinks there’s a lack of understanding about psoriasis, which adds to the emotional impact. She had a bad experience at a swimming pool.

Can you remember when that sort of impact on self-confidence started for you?

Probably when I started secondary school. Although my friends were they, they knew, cos they, they’d known me for a while. They didn’t really mind. Cos they just looked past it. But I sort of never liked to get changed in front of them for PE and the-, I don’t think the PE teachers quite understood so they were just like, “Yeah, everyone’s gotta get changed in one place.” And especially when I went swimming in primary school and secondary school, they- I didn’t feel like I wanted to do it. So often I would write notes saying, “My mum said that I can’t do it today.” And try and get out of it that way. 

Did that work or-?

Yeah, most of the time. But it meant that I couldn’t swim, so yeah. And then I tried to learn how to swim when I got a bit older. But then, you’d go to a swimming pool with a swimming costume and all of your skin would be showing pretty much. And then, you’d have the lifeguards come up to you and be like, “Are you safe to go in the water?” So, it’s just like ‘why bother?’ 

How would you deal with that situation if somebody like the lifeguard asked you that?

I just tried explaining, cos I was with my dad anyway, so he helped explain that it was safe. It’s not contagious. Cos I don’t think people know that it’s not contagious. 

Lisa thinks online forums are helpful for finding out about home remedies.

Have you ever looked into discussion groups or support groups around psoriasis?

Yeah, I’ve I joined one on Facebook and they’re quite helpful, especially if you don’t actually see a dermatologist and you, you get like a flare up, you can just say, “Okay, what, what works? What home remedies has everyone tried?” And they’re really supportive, and they’ll just be like, “Try this and I tried this,” and things like that. 

Could you give me an example maybe of some of the home remedies that you’ve been suggested or that you’ve tried out?

Yeah, most people suggest coconut oil. And some people suggest putting the sea salts in a bath and soaking with that. And putting oils into the hair like olive oils to help soften the scalp. 

Lisa and her boyfriend try to find “the funny side” of psoriasis.

My boyfriend’s extremely understanding. I think we, we spent one time sort of, in our free time, Googling what people would suggest for relationships and we found a load of sort of spoof sites where they would suggest red light bulbs and stuff. So, [laughs] that was pretty amusing. But no, he’s really supportive and kind of finds the funny side of it. And he does-, he says he doesn’t really see it, so it’s fine that way.

Lisa talks about her experiences with having psoriasis at school, sixth form and university.

In primary I didn’t really pay much attention to it until my teacher mentioned it and then she would sort of let me take my moisturiser into the store cupboard and whenever I felt it was a bit itchy or I needed some moisturiser, she would just let me get up and go do that. In secondary, I was a bit more conscious about it so I would cover up like my arms and my legs and stuff and especially in the summer when I’d have a short sleeved blouse, I wouldn’t want to take my jumper off until absolutely necessary, even though my teachers were just like, “Yeah, you need to take your jumper off, it’s boiling.” I would just like, “No. No, I wanna keep it on.”

Sixth form was fine. Everyone seemed to just not notice. And at university they’re really understanding. Everyone’s so, so nice, like my lecturers don’t mind if I’ve got a dermatology appointment and I have to miss a lecture. And my friends that I lived with for a year, they were really supportive. So they, they knew that if it was really painful not to like mention it and dwell on it. And they, they said that they couldn’t really see it even though I was stressing that it was really visible and it was just like, “Yeah, we didn’t even notice it until you brought it up.”