Lucy

Age at interview: 24
Age at diagnosis: 11
Brief Outline: Lucy was diagnosed with psoriasis at 11. She has tried different medications and three courses of light therapy. She is very encouraging of the need for more awareness and support around the emotional and psychological impacts of skin conditions.
Background: Lucy is 24 and a postgraduate student. She lives with her partner. Her ethnic background is White British.
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Lucy was diagnosed with psoriasis when she was 11. She first noticed that her scalp was very itchy. She went to see her GP who thought it might have been seborrheic eczema. When the eczema treatments didn’t help, the GP suggested it could be head lice but once again the treatments didn’t work. Lucy was referred to a dermatologist who took a biopsy of skin from under her arm. The results came back that she had psoriasis. Her psoriasis has since affected other parts of her body, such as her chest, back and legs. She finds that certain things can make her psoriasis worse, such as stress, processed foods and sometimes alcohol. She uses exercise and meditation to try and limit the impact of stress. She finds that religious services and sites, such as the waters of Lourdes, can be very calming for her. Lucy also tries to drink a lot of water every day and finds that she can see improvements in her skin when she has a healthy diet.
Lucy has tried different medicines for her psoriasis, such as cyclosporine and methotrexate, but found that the latter had unpleasant side effects such as nausea. She has also had three rounds of light therapy treatment which have all been very successful. Lucy says that her experience of medical professionals, including dermatology consultants and nurses, has been fantastic. In the hope of helping her psoriasis, she tried using tanning booths in shops for a little while but stopped when she was burnt and thought about the health dangers involved. She has tried some home remedies: she finds that olive oil rubbed into her scalp helps a lot, but that coconut oil can cause her skin to react badly.
Lucy is very aware of the emotional and psychological side of psoriasis. She has sometimes missed out on going out and seeing friends because of her psoriasis and the emotional impact it can have. When her skin is sore and she feels frustrated with it, she may want to stay home but pushes through because doesn’t want this to become a habit. Lucy has also experienced hurtful comments before but she believes that some people say such things because they are ignorant about psoriasis. Lucy sometimes uses clothes, make-up and hair styles to minimise the visibility of having psoriasis and to boost her confidence. She finds that bright or patterned clothes mean that skin flakes are less visible. Make-up can give her extra confidence, especially on occasions when she wants to make a positive first impression, such as job interviews. She has also used a fringe and scarves to cover some patches on her hairline. Whilst appreciating that these things can increase her confidence, she also feels very strongly that nobody should feel that they have to cover their psoriasis and she received compliments when she went a day without covering up the psoriasis on her head for awareness-raising on World Psoriasis Day.
Lucy says that support, online and in person, is really important. Her family, boyfriend and friends have been incredibly supportive. Her parents have provided her with opportunities to talk as well as give practical support, including paying for private dermatology appointments early on in her diagnosis and researching alternative psoriasis treatments. Lucy’s boyfriend has also been very supportive. She was nervous about telling him she has psoriasis when their relationship was becoming more serious, but felt it was important, especially because psoriasis can affect intimate areas of the body. There was very little formal support available for young people when Lucy was diagnosed and growing up with psoriasis. She thinks that having psoriasis at this age can be particularly tough because it is when young people are finding out who they are and what they want from life. She is now very involved in providing support to others. She has blogged about her experiences with psoriasis and is a project manager with the charity Mind & Skin. She feels that creative arts are also important and, in addition to a novel she wrote in which the two main characters have psoriasis, she is involved in a project collecting written and visual pieces about skin conditions.
Lucy’s advice to young people is to maintain treatment routines and to talk to supportive friends and family members, saying “just don’t be silent about it”. She encourages dermatology professionals to be more attentive to emotional and mental health. Lucy thinks there should be more support to help young people with psoriasis in schools too. She previously worked as a secondary school teacher and she is very aware of the difficulties students can have with such health conditions. She encourages teachers to be understanding and do their own research so that they can find ways to make the classroom a better environment for their students affected by different health conditions.
Lucy has tried different medicines for her psoriasis, such as cyclosporine and methotrexate, but found that the latter had unpleasant side effects such as nausea. She has also had three rounds of light therapy treatment which have all been very successful. Lucy says that her experience of medical professionals, including dermatology consultants and nurses, has been fantastic. In the hope of helping her psoriasis, she tried using tanning booths in shops for a little while but stopped when she was burnt and thought about the health dangers involved. She has tried some home remedies: she finds that olive oil rubbed into her scalp helps a lot, but that coconut oil can cause her skin to react badly.
Lucy is very aware of the emotional and psychological side of psoriasis. She has sometimes missed out on going out and seeing friends because of her psoriasis and the emotional impact it can have. When her skin is sore and she feels frustrated with it, she may want to stay home but pushes through because doesn’t want this to become a habit. Lucy has also experienced hurtful comments before but she believes that some people say such things because they are ignorant about psoriasis. Lucy sometimes uses clothes, make-up and hair styles to minimise the visibility of having psoriasis and to boost her confidence. She finds that bright or patterned clothes mean that skin flakes are less visible. Make-up can give her extra confidence, especially on occasions when she wants to make a positive first impression, such as job interviews. She has also used a fringe and scarves to cover some patches on her hairline. Whilst appreciating that these things can increase her confidence, she also feels very strongly that nobody should feel that they have to cover their psoriasis and she received compliments when she went a day without covering up the psoriasis on her head for awareness-raising on World Psoriasis Day.
Lucy says that support, online and in person, is really important. Her family, boyfriend and friends have been incredibly supportive. Her parents have provided her with opportunities to talk as well as give practical support, including paying for private dermatology appointments early on in her diagnosis and researching alternative psoriasis treatments. Lucy’s boyfriend has also been very supportive. She was nervous about telling him she has psoriasis when their relationship was becoming more serious, but felt it was important, especially because psoriasis can affect intimate areas of the body. There was very little formal support available for young people when Lucy was diagnosed and growing up with psoriasis. She thinks that having psoriasis at this age can be particularly tough because it is when young people are finding out who they are and what they want from life. She is now very involved in providing support to others. She has blogged about her experiences with psoriasis and is a project manager with the charity Mind & Skin. She feels that creative arts are also important and, in addition to a novel she wrote in which the two main characters have psoriasis, she is involved in a project collecting written and visual pieces about skin conditions.
Lucy’s advice to young people is to maintain treatment routines and to talk to supportive friends and family members, saying “just don’t be silent about it”. She encourages dermatology professionals to be more attentive to emotional and mental health. Lucy thinks there should be more support to help young people with psoriasis in schools too. She previously worked as a secondary school teacher and she is very aware of the difficulties students can have with such health conditions. She encourages teachers to be understanding and do their own research so that they can find ways to make the classroom a better environment for their students affected by different health conditions.
Lucy thinks the age at diagnosis is important, with social and emotional impacts.
Lucy thinks the age at diagnosis is important, with social and emotional impacts.
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Lucy’s dermatologist confirmed she had psoriasis with a biopsy (when a small bit of skin is removed to examine under microscope).
Lucy’s dermatologist confirmed she had psoriasis with a biopsy (when a small bit of skin is removed to examine under microscope).
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Lucy finds wearing make-up on her face and body boosts her confidence.
Lucy finds wearing make-up on her face and body boosts her confidence.
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Lucy’s psoriasis makes shaving her legs difficult. She finds it helps to use an emollient as a shaving foam.
Lucy’s psoriasis makes shaving her legs difficult. She finds it helps to use an emollient as a shaving foam.
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Lucy talks about some of the things she does to manage stress.
Lucy talks about some of the things she does to manage stress.
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Yeah. Yeah, definitely. I mean, last year when I was working as a teacher, it was my training and it was my NQT year, it’s called. And I found that very stressful, because there was a lot of planning, a lot of marking and then the actual teaching as well. It was very very full on. And so, my skin got worse during that. And a few years ago, my mam, my mam had meningitis and she was taken in suddenly. And, within days, like my skin got a lot worse. So I think stress massively, massively plays a part. But, it’s y’know it’s finding ways to deal with that stress. So I exercise regularly, which really helps my stress. Cos, I mean, at school I was awful at PE [laughs] I hated PE. But now I really do appreciate how important exercise is. And I’m not one of those people whose really interested in having a flat stomach or, you know, perfect beach body. But I do it for, for my mental health really, for, to stay calm and to deal with my stress, cos I find that cycling or running or any type of exercise really. Going to an aerobics class is really good. And just getting out the stress and calming yourself down. And then again, my boyfriend and my mam and dad are really good at just talking things through. And if I’m ever, I’m very lucky to have those really supportive relationships. And my brother and sister as well. Because if I am worried or stressed about anything, I can just talk to them about it and I know that they’ll be really nice and supportive. So that’s really good to have that.
Lucy learnt more about psoriatic arthritis through volunteer work with the charity Mind & Skin.
Lucy learnt more about psoriatic arthritis through volunteer work with the charity Mind & Skin.
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Is it something you keep an eye on or go for check-ups with or is it more just in the back of your mind?
Yeah, just in the back of my mind, yeah, I don’t really go for check-ups about that. But because of the stuff I was doing on Mind & Skin (charity organisation), I was invited to a board run by Celgene, a pharmaceutical company, about how to use like social media and with this drug that they’ve developed for psoriasis. And there was a doctor there, a rheumatologist who’s really interested in psoriatic arthritis and psoriasis together. And he was saying that psoriatic arthritis is far more common than rheumatoid arthritis, yet there’s so much more known about rheumatoid arthritis. So that made me a bit more aware of it as well, just to be aware of how I’m feeling. And if I do see a difference, I’d go straight to the doctor and get it sorted, cos I know that I’m probably at a high risk through having psoriasis. So it’s good to be aware. But at the minute, I don’t have any, I don’t have it [laughs].
Lucy encourages doctors to take a “psycho-dermatological” approach to psoriasis.
Lucy encourages doctors to take a “psycho-dermatological” approach to psoriasis.
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Lucy’s parents initially paid for her to see a dermatologist privately.
Lucy’s parents initially paid for her to see a dermatologist privately.
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So, like that is a frustrating aspect of it. But then again, like I say, I understand how busy dermatologists are and the health care system is. And so I’m not sort of angry at the wait.
Lucy didn’t like going to phototherapy without make-up on in the mornings.
Lucy didn’t like going to phototherapy without make-up on in the mornings.
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Lucy’s heard of a commercial light treatment. She thought this could save time and hassle travelling for treatment, but worried about misuse.
Lucy’s heard of a commercial light treatment. She thought this could save time and hassle travelling for treatment, but worried about misuse.
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There was somebody that I met at this group tries out new treatments and there is this thing being developed by Philips, which I’m a bit wary about, cos Philips is commercial and it does, you know, commercial things. So it’s not medicinal. And it’s sort of like a belt with a UV light on it. And I was asked to try it out, but it only really works on arms and legs and because the majority of my psoriasis is on like my trunk area, I couldn’t really use it. But that’d be interesting to use.
But it’d be good if there was some way of having light therapy in your home. But then, it would be abused, I suppose, cos it can be dangerous and you can’t do it long term. But I think that’d be so helpful, cos it can be a bit annoying having to go first thing on a morning like twice or three times a week. But for me, that’s the most helpful thing. So it would great having something in the house that you could use that for.
Lucy talks about the risks of skin damage from phototherapy, sunbathing and using tanning booths.
Lucy talks about the risks of skin damage from phototherapy, sunbathing and using tanning booths.
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And, I mean, I said earlier about when I was at school I’d had some light therapy and then I wanted some more, so I thought, ‘oh, I’ll go on the sun beds’, but like no way would I go on the sun beds again, cos it’s just, it’s not worth it. I only ever went on for like two minutes at a time or three minutes, y’know some people go on for ages to get a tan. And I was never interested in getting a tan. I was interested in it for my skin. But the light therapy at the hospital is so much safer that, ask for that. If you have psoriasis ask for that. Don’t go on the sun beds, cos they’re too dangerous. That was the mistake I made. But yeah, definitely the best treatment I’ve had, the light therapy.
What happened with the tanning beds? Did you have sort of a bad experience or was it more just concerns?
Just concerns, really. I had sort of like a card where I bought 25 at once. I’ve never used them all [laughs]. But I would go in once a week for three minutes a week. Something really small like that. But then, I’d been going for a few weeks and I thought well, I’ll have six minutes this week and then I burnt. And I thought, oh god, if these are burning my skin, they’re so powerful, like y’know, I’m not sure. I don’t, I don’t want to really risk it. And then, I’ve read so many stories about people who are getting skin cancer from sun beds and it’s just not worth it. And if you want a tan, get fake tan. I mean, I’m quite pale anyway, so I don’t really fake tan. But I’d rather do that than go on the sun beds now, just cos of the risks involved. There are so many risks. And I wouldn’t risk it.
Lucy says the side effects and restrictions when taking methotrexate outweighed the benefits for her.
Lucy says the side effects and restrictions when taking methotrexate outweighed the benefits for her.
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Lucy tries to stay positive and surround herself with supportive people.
Lucy tries to stay positive and surround herself with supportive people.
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Lucy’s keen to try alternative therapies for psoriasis.
Lucy’s keen to try alternative therapies for psoriasis.
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Lucy talks about different home remedies and where she learnt of them.
Lucy talks about different home remedies and where she learnt of them.
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Lucy’s been in the spring waters at Lourdes. She found it very calming and says her skin improved afterwards.
Lucy’s been in the spring waters at Lourdes. She found it very calming and says her skin improved afterwards.
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Yeah. The first time I went was when I was in Year 11, so I’d had psoriasis since Year Seven then. And I’d gone on a pilgrimage with the school and I was looking after the sick and the elderly in hospital. And I think, I mean, I went thinking ‘ah’, like you know, ‘I’ll go and miracles have happened here and I will be cured of my psoriasis’. But then, I went and actually I felt really, really lucky, because we were working with these really poorly people and I just felt really, really lucky that I, you know, that I wasn’t as poorly as them. But there were these holy baths where you immerse your entire body in there. The queues for them were so long. And the water is meant to be healing. And you go in completely naked. So I was so nervous about that, so, so nervous. But it’s only you and the nuns in there who do it. And it was, it was a very like a spiritual experience. And I felt calmer. So in some ways it helps, cos it helped with my stress. I didn’t really believe that I’d be cured. But I think it helped me in other ways. It massively helped me in other ways. Just, you know, making me realise how lucky I was, putting things into perspective and, and giving me a real sense of, of calm. It’s a lovely, lovely calm place. And whether you find, like whether people find that calm place through religion or through other means, through relationships or through experiences, I think it’s so important to do things like that, to get you to that place of calm, cos that really, really helped me. And my skin did get better afterwards, because of that, I think. So I really enjoyed that trip. And I’ve been another two times since, just like for a day, cos I go on holiday in France so then we’ve been close by so then we’ve gone for the day, which has been nice. So it is a nice place to visit, whether you’re religious or not, really [laughs].
Lucy thinks calming activities can be helpful. Examples for her include attending Mass and mediation.
Lucy thinks calming activities can be helpful. Examples for her include attending Mass and mediation.
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Lucy says her psoriasis sometimes negatively impacts her social life.
Lucy says her psoriasis sometimes negatively impacts her social life.
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Lucy’s family give her emotional and practical support.
Lucy’s family give her emotional and practical support.
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Lucy felt self-conscious about her partner seeing a skin flake in her hair before she had told him she has psoriasis.
Lucy felt self-conscious about her partner seeing a skin flake in her hair before she had told him she has psoriasis.
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Lucy wanted to her partner to know she had psoriasis before they became intimate. She was nervous about telling him but felt better afterwards.
Lucy wanted to her partner to know she had psoriasis before they became intimate. She was nervous about telling him but felt better afterwards.
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Yeah [laughs], oh god. Well, we’d been seeing each other for a while and I’m quite a, you know, a sensible girl and [laughs] and I’ve been brought up a bit like a Catholic education and stuff like that, so we didn’t get close or anything like that, for a while. And then, yeah, it got to the point where we really liked each other and we wanted to, but I thought, I can’t, I can’t, like I can’t do anything without him knowing that I’ve got this. And so, I don’t know, I think, I think we, he’d come round to mine and we’d made something to eat. And it was just over dinner, I told him, I just said, “Oh,” you know, “I’ve got something to tell you.” And it sounds so serious, doesn’t it, and so like cheesy, but there is no other way of doing it. And I said, you know, “I’ve got psoriasis.” And he didn’t know what psoriasis was [sniffs]. I just said, it’s, I explained what it was, you know. And I said, you know, “I’ve got it here and I’ve got it here. And I understand if you don’t want to see me anymore.” And he was just like, “Why would I not wanna see you anymore?” It was so like, it seemed so ridiculous to him, so ridiculous to him. But once I’d described it, I just said, it’s basically very, very dry skin, patches of dry skin around my body and it’s because my cells develop a lot faster than normal cells. But it’s in sort of, it can be in intimate places as well. And he was completely fine with it. I think, at first, he was fine with it, cos he didn’t want to be mean [laugh] and be like, ‘ergh’, but then, you know, when we did get intimate and got closer and everything, it was fine. It was completely fine. And I think you’ll be more comfortable being intimate with somebody if they know, because it would be so much more nerve-wracking if you hadn’t told them and then you were going to do something like that and they’d be like, “Oh, well, what’s that?” That’s awful, you know, that wouldn’t be very nice. So I think I’m glad that I’d told him before we did anything, so then it was easier to be intimate and close afterwards.
Lucy has some advice for school teachers about how they can support students with psoriasis.
Lucy has some advice for school teachers about how they can support students with psoriasis.
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Psoriasis can affect Lucy’s confidence, including at job interviews.
Psoriasis can affect Lucy’s confidence, including at job interviews.
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Lucy had to take a day off work at short notice for an appointment with her dermatologist but her employer wasn’t very understanding.
Lucy had to take a day off work at short notice for an appointment with her dermatologist but her employer wasn’t very understanding.
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Lucy’s message to young people is to not let psoriasis “hold you back”.
Lucy’s message to young people is to not let psoriasis “hold you back”.
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