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.

More about me...

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 thinks the age at diagnosis is important, with social and emotional impacts.

I think I was diagnosed at a really sort of key time, because I was just about to go to secondary school. And I was very aware of my appearance and how I looked and things. And, I did find it very difficult. I found it more difficult then than I would now if I was just diagnosed now, I think. And I think, because, as a child or as a teenager, especially, y’know, I was going through school and I was working really hard on my studies, but then, y’know, I was interested in boys and I had lovely friends as well, but all of these things coming together and I thought well, and it was, it’s so difficult. You don’t really, you don’t know who you are or what you want yet, I didn’t anyway. I had no idea. And but now, at, at 24, I’m secure in a relationship and happy, you know, career wise and I think when you are happy like that and secure, you tend, well, in my, in my experience, I now feel better about my condition and feel that I can handle my condition better and keep it under control better.

Lucy’s dermatologist confirmed she had psoriasis with a biopsy (when a small bit of skin is removed to examine under microscope).

And I was brushing my hair and I had bits in my hair and I thought, ‘this is weird’. So then we went to the doctors and he looked and he said, “Oh yeah, I think it, it must be a bit of dermatitis” he said, first. So I got some cream for dermatitis, nothing happened. And it was really itchy. And I went back and he said, “Ah”, you know, “It must be nits,” and gave me nit treatment. Didn’t work. Went back again, so this was over the course of probably six weeks. And he said, “Ah,” you know, “Well, we’re gonna have to refer you to a dermatologist.” Which is then, I went to the dermatologist [clears throat]. He then said it was seborrheic dermatitis to start with. Sent me away with treatment. Then we came back, nothing had changed. And so he took a biopsy the second time we went back to the dermatologist and I was only about ten or 11. I can just remember seeing my poor Mam’s face. So it was, like lying, I can remember clearly, I was lying on the table and I had a biopsy from under there [points to underarm]. And she looked like grey and I can remember the nurses saying, “Get the mother a toffee,” you know, “She’s gonna collapse.” [Laughs] But I was numb so I couldn’t feel it. So I felt fine.

Lucy finds wearing make-up on her face and body boosts her confidence.

And then make-up and I mean, I completely respect people who don’t wear makeup. I respect people who wear loads of make-up, fake tan, whatever. But for me, personally, I love make-up and I really do think make-up is a way, not just to cover it up, but to give me confidence. Like I wouldn’t feel confident going out, you know, without make-up on. And even, not just make-up on my face, but for my prom, in Year 11, I had this beautiful floor length dress, but it was quite a low back. And I had quite a lot of psoriasis on my back and I thought ‘what am I gonna do?’ And me and my Mam researched sort of like concealers and stuff. And we found this stage make-up. And it was brilliant. And it was, it was y’know, the same colour as my skin and we managed to like blend it all in. And it looked great and I felt so much more confident with that on and I just think, ‘why not?’

Lucy’s psoriasis makes shaving her legs difficult. She finds it helps to use an emollient as a shaving foam.

Sometimes my skin gets really really bad from shaving and my doctor said, last year, my skin got really bad. And we went on holiday and I couldn’t go in the sea or in the pool, cos it was so bad. I was so frustrated. My doctor said, “Don’t shave.” But as a woman, you don’t, you know, you want to shave your legs don’t you, especially in the summer. So you know, sometimes I use Veet, which is really good, but it’s messy and quite smelly and but I think, you know, I used to use like, I used to just get cheap razors, which I shouldn’t have done, cos it, it knacks, it really really damages my skin. So what I do now is get like good razors and, good disposable razors, but use a new one every single time. Cos it’s easy not to, it’s easy not to use it a few times in the shower, but it’s not worth it, cos, cos that’s how your legs will get, well, that’s how my legs will get really bad and. So as long as I shave carefully and properly I can do it and it’s fine on my skin. But the doctor gave me this really good cream and I can’t remember what it was called, but it’s great. And he said he shaves his face with it. So it’s this moisturising cream that I put on my legs instead of using like shaving foam, I use that. And then shave against the hair growth, like not, shave the same way as the hair growth rather than like against it, so there isn’t that much friction. And my legs are so smooth afterwards with this lovely moisturiser. So there are ways of doing it. Cos, I wouldn’t like to walk around in the summer with hairy legs [laughs]. There are ways of doing it. But I just have to be really careful, cos I haven’t in the past and my skin’s been really bad because of it.

Lucy talks about some of the things she does to manage stress.

So stress is a definite trigger for your psoriasis?

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.

I’m always aware of my joints and things, cos I know that psoriatic arthritis can be, you know, you can develop that if you’ve got psoriasis. But at the minute, I’m alright [laughs]. It’s just the psoriasis that I have. 

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.

I think it’s important to take an interest in the person. And I understand how busy doctors are. But it’s so helpful. It’s so, so helpful. And it puts the patient at ease. Just asking them about them, like “What’s your job?” or “What are you studying?” and “What are your interests?” It doesn’t take long. But it makes them feel that you care. And I understand that doctors have a job to do. But there has to be compassion there. And then, secondly, I think, bringing in the psychological aspect of the conditions. Cos in my experience there hasn’t been much advice or discussion from dermatologists or the medical profession about the psychological aspects of the condition, which, of which there are a lot. So I think by, by merging, you know, mental health and dermatology in some way that would really, really help young people deal, deal with their condition a lot better, cos it brings so many psychological issues and stuff. And if dermatologists addressed that more and GPs addressed that more, it would help a lot. 

Lucy’s parents initially paid for her to see a dermatologist privately.

When I was first diagnosed there was a very long waiting time for it. For the NHS appointment. And so, my mam and dad decided to get me an appointment privately, because that meant I could be referred within like two weeks. I’d already waited a long time, cos I’d been back and forth to the GP. And mam and dad must have spent so much money those first few years, because we had like private appointments. And we don’t have private insurance or anything like that. It was just like the private appointments, so they were very expensive. But I suppose that’s a testament to how much they cared and how much they wanted me to get my treatment straight away. And I really, really appreciate them doing that. But it’s difficult to keep up with a long term condition like that – you can’t. Unless you can afford it, you can’t have, you know, private appointments all the time. When I was first diagnosed, they did that cos they wanted to get the treatments going. And so, yeah, sometimes the waiting times can be frustrating. It’s often three months waiting time, I think; sometimes longer. And it’s frustrating, cos I’ll go to the GP, cos my skin’s really bad and they’ll say, “Yeah, I’ll refer you,” but then it’ll be another four months. 

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.

I had my first course when I was at sixth form and I would go about half seven on a morning, I’d get the bus to the hospital, which is quite near me anyway. Go on a morning and then go to college. But then, you can’t wear any deodorant or perfume or anything or make-up in there. So I always hated going on the bus with no make-up on [laughs]. It was awful. And then I’d get in and then put all my make-up back on in the hospital toilets and sometimes I’d be late for my first lesson and stuff. And there’s a bit of a faff on. But, I saw such a difference in my skin. It was, it was amazing. It was like, it was the first thing that really, really worked. And I loved it. And it warmed me right up on a morning [laughs] so that was nice. 

Lucy’s heard of a commercial light treatment. She thought this could save time and hassle travelling for treatment, but worried about misuse.

What about potential treatments for the future, if there is any that you are considering?

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.

If I have light therapy, I’ll make sure I wear the goggles and make sure I wear you know, appropriate underwear and things so I’m not completely exposing my whole body to it, cos it can be quite powerful. And then, similarly, when I’m out in the sun, although the sun’s fantastic for it, I’ll always, always wear sun cream, a high factor sun cream, cos it’s so important. So it’s just, it’s knowing, it’s like getting the balance right, really, because it’s so easy, especially when I’m feeling down about my skin to put loads and loads of cream on or to, you know, go out in the sun with no sun cream on. Even go on a sunbed. At times, I did go on sun beds, but I’ve stopped doing that, cos it, in low doses it does help. But it’s, it’s not worth getting into the habit. 

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.

With the methotrexate cos I was given loads of information about it cos it’s such a strong drug, when I first started. And, with psoriasis it’s used in very low doses. But in higher doses it can be used for chemotherapy treatments and things like that. Which scared me a bit. But then I spoke to my dermatologist and he said, you know, “It’s in very low doses and because it can affect your liver.” I had to have blood tests every two weeks. So they were very, very good at monitoring the effect on me. But, I was in my final year of university and had final exams and essays and stuff. And, it made me feel sickly. I took it once a week. And I think I took it on a Monday and the Monday, Tuesday, Wednesday, I always felt really, really sickly and headache-y as well, which was strange. But things like going out for a meal. I’d go out for a meal with my boyfriend. I can remember one particular time, we went to this lovely Indian and I couldn’t eat anything. I had this sort of starter and I felt really sick and I love Indian food. And, so just, it affected me like that. And it was, it was a shame, really, cos my skin, I felt the best I felt, like I felt like I looked normal, you know what I mean? And but yet, I was feeling so sick and headache-y and quite tired, I think. And it just, it got to the point, I was on it for a good few months, and it got to the point where I thought, ‘I’d rather have a bit, a bit of psoriasis and keep it under control with topical things maybe, than feel like this all the time’. And like I say, it affected my social life as well. And I know it shouldn’t. It really shouldn’t have, cos you do not need alcohol to be sociable. But I think it’s [coughs] it’s quite a big aspect of uni life and things. And I did still go out and not drink and had a nice time. But I felt that my friends were thinking, ‘oh, she’s been boring, she’s not drinking’ and didn’t really understand how serious the medicine was, where you can’t drink on it, cos it can really affect your liver. So, it did come with, with a lot of problems in my experience. And unless it got very, very, very bad, I probably wouldn’t like to go on it again. 

Lucy tries to stay positive and surround herself with supportive people.

I try to stay positive a lot. And, you know, put things into perspective and, and see how lucky I am. But sometimes, I do find it so difficult. And I hate, I hate the fact that I’m being all you know, self pity and feeling sorry for myself. But sometimes I’ll have days where I’ll think ‘none of my clothes’ll look nice. My hair won’t look nice. My face won’t look nice. I won’t look nice’ [laughs]. Sometimes I’ll think like that cos of my skin, cos my skin is really bad. Sometimes it will be so sore that I’ll just be so frustrated and just wanna stay in all day. And it’s so easy to do that. But, but you can’t, like I can’t, cos then once you get into that, that habit, it’s, it’s, you know, it’s bad. I really try to pull myself out of it. And I think, I do think having a supportive partner and having supportive friends and supportive family really, really helps me. I think I’ve been in friendships before and relationships before where they haven’t been that supportive and I’ve felt anxious or stressed and that’s made my skin worse. And it’s just not worth it. It’s just not worth it at all. And now I’m not in those friendships or relationships, I feel so much better for it.

Lucy’s keen to try alternative therapies for psoriasis.

I’m really interested in alternative medicine. And interesting that my GP is [laughs]. He’s really interested in sort of acupuncture. I haven’t had that yet [laughs]. But acupuncture and other things. I mean, I just, I don’t like the idea, especially with things like cyclosporin and methotrexate, I don’t like the idea of pumping my body full of medicine. So I often look at diet. I think I, I think I eat quite healthily. And you know, I’ve read things like cutting out dairy helps. Cutting out this helps it. And I haven’t really cut out a specific food group, cos I don’t think that’s healthy for your body, you know, otherwise. But I try to eat healthily. I try to exercise. But then in terms of alternative therapies, I’ve used things like olive oil, coconut oil, things like that. I’ve even been to Lourdes and got in the holy water there, the holy baths. Which is more of a religious thing than an alternative therapy. But I think, sometimes you’re so desperate you’ll try anything. So that was interesting. And I’d really like to go to the Dead Sea and try that, cos that’s meant to be really good for your skin. So I’m very up for alternative therapies as well [laughs].

Lucy talks about different home remedies and where she learnt of them.

Yeah, where did I find out about olive oil? I think my grandmother’s sister used it years ago. Cos she had it a lot worse than me and she had it all over her body and she used to cover herself, absolutely cover herself with it and then wrap bandages round it, cos hers was very very bad. And I thought I will try it on my scalp and it really, really worked. And then, I use the Internet a lot for alternative therapies. So, coconut oil, there is CariDee English she’s called, she was on America’s Next Top Model and she’s got psoriasis. And she uses coconut oil a lot. So I thought, ‘oh, I’ll try that’. But interestingly, I had a bad reaction to it and so I was putting it on my scalp and my scalp got a lot worse, so I stopped using it [laughs]. But that’s what I mean about different people have different responses to things, so there’s not one thing that works for everybody with psoriasis. Yeah, I think the Internet’s really useful. I’ve got quite a lot of books as well, sort of, I’ve got a book called, The Psoriasis Diet, The Healthy Skin Diet. I do look into stuff like that as well. So all sorts of areas really. Mainly books and the Internet, where I get my information from. And sometimes my GP, cos he told me about the meditation. 

Lucy’s been in the spring waters at Lourdes. She found it very calming and says her skin improved afterwards.

Could you tell me a bit more about the trip to Lourdes?

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.

I was brought up Catholic. And I’m not devout. But I do, I do find sort of, I do find calm in the religion and in sometimes, I mean, I don’t go to Mass every week and things like that. But I don’t think you need to go to Mass to be a good person. But sometimes when I am in Mass, I feel so calm [laugh]. And it’s lovely and it’s so relaxing. And, and I think it is a good way to just to calm yourself and to relax. But it doesn’t necessarily have to be in a church or a temple or a synagogue or a mosque. It can be meditation at home. And I’ve tried that as well and I mean my GP recommended that, he recommended meditation. And it’s difficult. It’s difficult getting into it. But, he said, “Try to imagine your skin free of psoriasis for 30 to 40 minutes.” That’s a long time and I’ve found it hard. So I can’t really do it for that length of time, cos I go off on a tangent and think of other things. But like our lives are so busy, aren’t they, and just like, I do find it really helpful to just like take time every day, even if it’s ten minutes or 15 minutes to just be by myself and to just like just think and just, it sounds, it sounds almost a bit cheesy, doesn’t it, or like. But just to be completely silent. Just to imagine, yeah, imagine maybe my body free of psoriasis. Sometimes I don’t even imagine that, sometimes I just, I’m just really calm and think about my day and like clear my head. And I think it does really help. It helps with stress a lot. And I think there’s a lot to be said for, you know, talking to your partner and your family and your friends. But sometimes even that, you feel like a broken record [laughs]. So sometimes it’s nice to just to be nice and calm and, and take that time and, you know, practice like meditation, whichever way you want whether it’s through religion or otherwise. When I was a teacher, I worked in a Catholic school and some of the services we had there I found really nice and really calming and nice. And I think sometimes, although a lot of the young people wouldn’t admit it [laughs] I think it sort of helped them in ways as well. But I’d never be the type of person who would say, you know, “You need religion to calm your mind”. But in my experience, aspects of it have helped.

Lucy says her psoriasis sometimes negatively impacts her social life.

I mean, sometimes I’ll think my skin’s really bad. I don’t wanna go out. I just don’t wanna go out and if it’s a friend’s birthday or something, it’s awful, cos I wanna go out to celebrate their birthday, but then I’ll think I’ll look horrible. Like I don’t wanna go out, cos I don’t look very nice. But then, other times, other times I’ll think, like if I don’t have a fringe, if my fringe is growing out and my skin’s really bad, I won’t, yeah, I won’t go out. But like I say, it’s easy to be like that and it’s easy to not go out and I really, really try hard to go out, even when I’m not feeling like it. Because I don’t want to get into that habit. I don’t want to get into that habit of feeling sorry for myself and staying in and not going out. But sometimes it is difficult, cos sometimes, even with all the make-up. Sometimes make-up makes it look worse, cos it’s so dry and I put make-up on top of it and, ah, it just looks awful. So it can be difficult going out and deciding what to wear as well. If I’ve got loads of flakes of skin on my shoulder, which is why a lot of my clothes are bright colours or white or pale. So, sometimes, yeah, it does affect me going out, yeah. And it’s, I mean, it can be upsetting for my boyfriend, cos I can remember once, he said that he’d take me out for dinner and I didn’t want to go out, cos I just looked so bad. And it’s a shame, cos I, I mean I did end up going out and we had a lovely time, but it’s a shame cos it affects other people as well and it shouldn’t. 

Lucy’s family give her emotional and practical support.

I’m really close to my mam, dad, brother and sister. We’re a really close family. And my mam and dad are both one of five, so we’ve got a big extended family. And so everyone is always looking for alternative therapies and having like clippings from, from the paper and from magazines and stuff. So it’s really nice. And I can just remember, I’ve got memories of, you know, sitting in the kitchen with my mam rubbing olive oil in my hair or my dad rubbing cider vinegar in my hair and it’s just, it’s just part, it’s just part of our lives, really. And they’re so helpful and they don’t make a big deal out of it. And, and whenever they’ve found a new therapy, you know, they try it out and stuff on me. And they are just so, so helpful and supportive and loving [laughs] they’re just brilliant. But I think they’re also perceptive as well with how I feel. They know, they can tell if I’m sad or if I’m stressed out about something and sometimes I won’t want to talk to them. So last year, when I was teaching, I lived with my parents and it did get quite stressful sometimes and particularly that episode with my boss and I was unhappy at times and quite stressed. And they know, they know me so well that they know. And sometimes I don’t want to talk about it. But they sat me down and said, “Talk about it.” You know, “Tell us how you’re feeling. We know that, we know that you’re unhappy”. And sometimes I would lose-, I would be short tempered and I’d be a bit mean to my mam and I hate being mean to my mam [laughs]. But, sometimes it makes you do that. And it’s horrible. And, y’know, I’m so frustrated with my skin and so irritated, and I’ll take it out on her or my dad, and you shouldn’t. I really, really shouldn’t and I know it’s easy to, but and they’re so understanding as well. But that’s why even if you don’t wanna talk about it, it helps, like it does. Cos, I didn’t want to talk about it at times and they sat me down and they said, “Look,” like, “We know that you’re stressed or you’re upset and but tell us why. Talk to us about it, like how can we help?” And I’m so lucky to have that, really. To have that support there, very, very lucky. 

Lucy felt self-conscious about her partner seeing a skin flake in her hair before she had told him she has psoriasis.

The other big thing in terms of like the emotional aspect of it was like, intimacy. And relationships and stuff. And throughout school and college I didn’t have a boyfriend or anything like that. And then at university I met somebody who I really, really loved and, and you know, I wanted to be close and to be intimate and stuff. So I just, I was really honest with him. But I remember one time we were getting ready to go out and he said, “You’ve got something in your hair.” And it was like a piece of skin from my psoriasis. But he didn’t know I had it. And I was really like, [moves arms around] “It doesn’t matter, it doesn’t matter.” I was very defensive. And I think he was a bit [sideways glance], you know, he was a bit taken aback. But then, once it got more serious and I told him all about it, he was completely fine with it. And he’s so supportive. And lovely and understanding. And I think a lot of people will be. You know, people shouldn’t be nervous about relationships or about telling people about the condition, because it’s part of who you are and if they love you, they’ll love you for exactly who you are. And I feel very lucky to have that, to have that relationship. So that sort of anxiety about that has gone now, cos I’m lucky to be in a nice, loving relationship. But, yeah, there is a lot of anxiety that comes with it and, and emotional aspects that come with it, so it can be difficult. 

Lucy wanted to her partner to know she had psoriasis before they became intimate. She was nervous about telling him but felt better afterwards.

Could I ask a bit more about the process of telling your partner about psoriasis and how you approached it?

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.

To be understanding. To be very understanding, because sometimes, cos teachers are very busy. Everyone’s very busy, you know, and doctors, teachers are very busy, but it’s so important to be understanding. And, and children are so sensitive. Pupils are so sensitive. You know, teenagers are so sensitive. The slightest thing you say it can really bother them. And it’s so important to be understanding of children’s conditions. And if you’ve got a child in your class with psoriasis or with acne or with eczema or any other condition, research it. You know, if you’ve got a list that says, “This is what they have”, don’t just accept it, research it and find out about it. Find out how you can help them. If it’s better for them to have a cool classroom, open the windows. If it’s better for them to have a warm classroom, close the windows, y’know. If, if they’ve got psoriasis, it’s often shirts can rub. You know, if they wanna loosen their ties or take their blazers off, research ways in which you can help them in the classroom with their condition. And I think, PE teachers as well have an even bigger responsibility, because it’s, you know, with body image and things like that, even if you don’t have a condition like this, it’s difficult for, for a lot of children to do PE and to wear the PE kits and things. So, for PE teachers, be understanding too and look into it. And if they’re doing swimming and you think it might affect their skin. Don’t go mad if they don’t do swimming, put them in a different class. It’s just, the key, I think, is understanding. And, and taking your own initiative to find out yourself. Don’t ask the child, find out yourself. And a website like this is a brilliant way to do it [laughs].

Psoriasis can affect Lucy’s confidence, including at job interviews.

I mean, I went to an interview lately, recently, and it was a really hot day in [city name] and it was a long, it was like an assessment day and I had make-up on and I put my foundation on and I set it with powder, but then, because it was hot, it was, you know, it was starting to like come off. And then I was adding more powder. But that makes my psoriasis drier and I’m so aware of it and I want to make a good impression. And I know, that employers would, employers shouldn’t and I’m sure that they wouldn’t think, ‘oh, what’s that? What’s that skin on her, you know, she’s got really bad skin on her forehead’. But, unfortunately, I do think that appearance, especially in an interview sort of situation, is important and, you know, I wore smart clothes and I wanted my hair and my face to look smart as well. So I think that’s very important. I mean, if I’m just in the house with my boyfriend or I’m in the house with my mam and dad, sometimes I will just let my skin breathe and it’s lovely. It’s lovely to spend a day without make-up and to put loads of olive oil in my hair and to just sit and just be all moisturised up [laughs] it’s great. But other times, I think it, I find it very important to wear make-up. And at work, y’know, whenever I’m at work, I would wear make-up and uni.

Lucy had to take a day off work at short notice for an appointment with her dermatologist but her employer wasn’t very understanding.

I think another thing that, that sort of upset me was when I was working last year, I was working in a school and I was off for a day, because I’d had an appointment for my psoriasis, but it had, it had, it was really, really bad. And I was in class and I was scratching constantly and it was unbearable and I had tights on and I was hot and it was, it was really, really unbearable. And I’d put up with it for weeks. And, I couldn’t, I couldn’t do it, it was really, really unbearable. And, it was a Friday and I’d managed to get an emergency appointment with the dermatologist and I rang my boss and I told them and everything. They were really understanding. But then I went in on the Monday and I can remember my boss – y’know I said, I apologised, I said oh y’know, “Sorry for being off on Friday.” Even though I shouldn’t really have apologised, cos I’d explained why. And my boss had said, “It’s okay, but you shouldn’t really be off if you’re not really ill.” And I was just like awrgh, do you know when your heart-, and my heart just sank and I felt like crying. And like, ah, I was, it was just awful. It was such an awful feeling. And I found myself explaining to her. Explaining to her all about my psoriasis and how uncomfortable I felt and how frustrating it was. And I said, I said, “Do you want me to take off my tights and show you?” And she’s like, “No, no, that won’t be necessary.” But I just think-, and it might have come across as her being nasty, but I don’t, I think it was her lack of understanding, that’s what it was. But it was so upsetting to sort of, to be seen by your boss as sort of, your boss sort of not trusting you when you say, y’know, “I’m having a day off, because of this, this is really bad. It’s a life-long condition.” To not trust you, to think you’re, y’know, I wouldn’t do that at all. And so, that was really, really upsetting. And, what ended up happening was, you know, we spoke at length about it and she did, it was a lack of understanding and everything. But that was really, really upsetting.

Lucy’s message to young people is to not let psoriasis “hold you back”.

And I always wanted to be an actress when I was younger. And that was difficult as well. I mean, I was in the National Youth Theatre so I did quite a lot of stuff, acting stuff. But I always thought ‘I won’t really be an actress because of this, like, it will hold me back’. You know, part of me thinks, ah, you know, would I be an actress now? But my ambitions changed and when I was at university I decided I didn’t wanna be an actress. But I think in terms of [microphone knock] sorry. In terms of young people thinking about what they want to do in the future, career wise, something like this can really hold them back. And it really shouldn’t. And it might seem like it has held me back, but my ambitions did change when I was at university and I decided I wouldn’t want to be an actress, because it would be difficult if I had a family, travelling around all the time and I’m quite a home bird and I wouldn’t wanna go down to London. So you know, that was my personal decision, but it’s, it’s so easy to let things like this hold you back from your ambitions and from what you want to do, especially young people. And when I was at, when I was a teacher, for a year, I just, I really really encouraged my pupils to be whatever they wanted to be, cos anything’s possible when you’re that age. And it, it’s exciting and you shouldn’t let anything like psoriasis, acne’s so common amongst young people, eczema. You shouldn’t let anything like that hold you back, because once you get older and once you get to my age, I think anything’s possible. Like if I want to be an actress, I might go to an open audition. You just, you can do whatever you want to do if you just go for it. You shouldn’t let anything hold you back and looking back now, I see myself and I see myself thinking, ‘oh, I can’t do that, I can’t do that’. And I wish I could speak to myself, you know what I mean? Or speak to young people now and say, “You can.” Like you shouldn’t let it hold you back, cos it’s such a shame if you do.