Megan

Age at interview: 16

Age at diagnosis: 7

Brief Outline: Megan was diagnosed with psoriasis at age 7. She has learnt to cope with other people’s responses to her skin condition better as she’s become older. She researches about psoriasis online a lot and is keen to educate other people about it.

Background: Megan is 16 years old and a secondary school student. She lives with her parents and siblings. Her ethnicity is White English.

More about me...

Megan was diagnosed with psoriasis when she was 7 years old after being referred to the dermatologist. She was very shocked and confused with a lot of questions when she was first given the diagnosis. Stress, some laundry detergents, cold weather, tight clothes and having a sore throat can all can make Megan’s psoriasis worse. Her psoriasis has affected different parts of her body, including her scalp which caused a bald patch when she was 8, and doctors think that she may have psoriatic arthritis in her ankle.

Megan has tried various treatments for her psoriasis, including steroid creams, immunosuppressant tablets, phototherapy (light therapy) and weekly biological injections. All of the treatments helped for a while but then became less effective or were stopped because of side-effects. Megan felt both excited and anxious about the light therapy sessions but it could be quite stressful to make the journey to the dermatology department every other day. Megan says that her dermatology doctors and nurses have been really supportive and reassuring. They take an interest in how she is coping and try to boost her confidence. Her family has also helped her cope and cheer her up, especially when she was frightened about having the steroid injections in her legs. Megan currently uses steroid creams to manage her psoriasis but finds that it can be confusing to have so many, for various parts of the body (scalp, face, body) and for use at different times (for washing in, for applying after a bath).

Psoriasis impacts Megan’s life in a lot of ways. For example, she avoids activities which might injure her skin because even small grazes can cause more psoriasis to develop. Her sleep is badly affected when her psoriasis is itchy and the impact on her energy levels has recently made it very hard to concentrate and revise for her GCSEs. Other people’s reactions to Megan’s psoriasis can be hard to cope with. She was bullied at school and the last year of primary school was especially difficult. The other children called her names and this damaged her confidence a lot. Megan remembers one summer when her psoriasis was quite severe and she decided to only wear jeans or tracksuit bottoms and long sleeved tops. It was uncomfortable to wear so many layers but she preferred to be covered up so that other people couldn’t judge her skin. Megan also worries about other people seeing when her skin flakes and she spends a lot of time cleaning.

Megan has learnt to cope with psoriasis and other people’s responses to it over time. She feels that her experience of having psoriasis has made her a stronger and better person overall. She tries not to let it upset her and feels strongly that the prejudices other people may have about her skin should not determine what she wears. She finds ways to explain psoriasis to her school peers and was able to include her experience of having the skin condition in coursework. She spends a lot of time researching online about psoriasis and finds it rewarding when she is able to educate other people about the condition.

Megan found that the building up of layers of skin on her scalp caused some hair to fall out.

I think my hair just randomly started falling out one day, and I got really panicky about it, so I was talking to my mum, and my-, we rang the hospital, and they said it could be because my psoriasis was growing thicker in my hair; like it was growing really quickly, and you couldn’t stop it growing even if I put the creams on, like it wouldn’t stop growing, so my hair just started falling out. And then they said to me that I had to like really carefully get like a comb, and carefully like not scrape, like carefully brush my hair so that my psoriasis would fall out of it, and like not cut the tops off of the skin, but take away the skin slowly so that it would reduce it growing so quickly. But I remember like trying to hide it; so I wouldn’t have my hair up; I'd wear my hair down all the time cos it was like right behind my ear, like here [points to left ear]. So, I used to wear my hair down so that you didn’t see it at all.

And did it help with what the dermatology department suggested of combing through your hair, did that help at all?

Yeah it stopped it from growing so quickly, because I was taking the like top layer off as soon as it would grow. So, then cos I brushed my hair like every day anyway; I had to brush it in the morning and the evening to make sure that all the scalp was like clear, and even though I knew it would grow again, I was prepared to go through it, like ready to take off the heads a bit again. 

Megan talks about her response to being diagnosed with psoriasis when she was age seven by her dermatologist.

I remember being told that it was psoriasis, and then I sat there and I didn’t know what to do, because I was seven, and I didn’t even like want to go to the hospital; I just wanted to go to school. And then I sat there and I remember my mum trying to explain to me, like-, I knew that it was something to do with my skin, but I didn’t know what it was, and like I used to ask my mum weird questions like, "Am I going to die?" and everything, because at seven, I didn’t know like the side-effects or anything.

And I remember sitting there once the nurse had told my mum, and I just sat there, and like loads of questions went through my head. Like, I didn’t know what to think, because a seven year old doesn’t expect to sit in the hospital and be told that she's got a skin condition, which she could have for the rest of her life. And I just kind of sat there like, this is going to entail on my whole life; I could have it for the rest of it, and like people are going to think it's ugly and horrible, and like I'm going to lose so many people because of it. Like I knew what was going to happen, and then it did eventually.

Megan describes how the severity of her psoriasis changed over the years.

It's kind of been like a rollercoaster I guess, where it was like, when I first got it, it was quite bad, and then it's got better – bad – better, but I remember, I think it's like June, July four, five years ago, and it got really bad, and we'd just broke up from school and it got really, really bad, like you couldn’t see my skin; like except from like my wrist down; and my feet, my arms, my body, my chest, my back, everything was completely covered. And like I felt really self-conscious, but I didn’t want to go out that whole summer, and like my sisters would go, "Do you want come play in the garden?" and I didn’t want to cos I was scared of cutting it as well.

Because I couldn’t like do the things that I wanted to do; like I couldn’t go on bike rides because if I fell off I'd cut myself. So I was like, it got to the point where I was like really scared to do things, so I'd just kind of stay in cos I didn’t want to hurt myself, because I knew that if I'd hurt myself it would cut and it would bleed, and then it would grow again; and it was kind of I knew that was going to happen.

A few summers ago, Megan covered up so others couldn’t see her psoriasis.

I decided all through the summer I'd wear jeans or tracky bottoms, and I'd wear long sleeved t-shirts and jumpers. Even if I was really hot I'd still wear them, like I didn’t want people to see my skin, so I'd do it anyway. And then, as my skin got better I'd like wear whatever I felt comfortable in. But when my skin was really bad in July, I decided that it was best if I just covered it up, so no one saw it. So, I'd just, I'd go out with my mum like shopping, but I'd wear so many layers, and you'd see loads of people like in shorts and t-shirts and everything, and then there'd be me in like jeans and like a long sleeved t-shirt and a jumper.

So, what was that like for you if you have to go out with sort of more clothes on, more layers?

It would, it like made me feel really hot, and like I wanted to take it off – but it made me feel a bit better, like no-one can see my skin so I'm not getting judged; and I guess that’s the thing that kept me wanting to do it. Like, I'm not getting judged and I'm quite happy like that. I don’t want to be judged by people because that makes my self-confidence even worse. And just as my self-confidence was getting better, it just went straight back down again.

Megan finds it difficult to describe psoriasis to her friends as the wording is sometimes unfamiliar.

I find I can talk to like my close friends about it but I still find that quite tricky, because some of the things that I understand about it, they don’t. So, I kind of have to be careful in my explanation, because if I explain something and they're like, "What?" It's like, 'Oh I have to explain it this way instead of that way.'

Could you give me an example of that?

Like, when I was talking to them about like what it's like – it's a chronic inflammatory skin condition and everything – it really confused them because like you don’t hear some of the words most of time; and like it took a lot of like time to explain like the different treatments and what it entails, how it helps you and everything, because they didn’t really like, they didn’t have any experience with it, so didn’t really know.

Megan had her ears pierced but found psoriasis grew in the holes. She’s unsure about getting her belly button pierced.

I had my ears pierced, but because of my psoriasis I had to take them out cos my psoriasis would grow in them and then like go round the actual wiry bit, and then it would be like stuck, so I took them out. And like the holes are still there, but because there's psoriasis in them, I can't re-pierce them.

So, does that also affect like other things; like if you were planning on getting other parts pierced, or like tattoos and things in the future?

I can't have tattoos because of the like ink bit. I've already been told that. Like I could if my psoriasis had completely gone; and I want to get my belly button pierced, but, and I asked the doctor, and the doctor said it was probably OK to do it, because I don’t have psoriasis round that area.

Mm mm and had you had psoriasis like on your ears before you got them pierced, or was that…?

No, and then after I got them pierced it kind of just started.

So, do you think you will get your belly button pierced?

I don’t know. I keep like thinking about it, but I don’t wanna do it and then my psoriasis goes near it and then obviously I can't have that anymore. So, I think I might just wait for a bit, and wait till I know where my psoriasis is under control even more.

Megan finds cold weather harder on her psoriasis.

Does weather make a difference at all to your psoriasis?

The cold

Does it make it worse?

It like cracks it and makes it all dry; and the sun's really good for it, cos I got told, I remember getting told at the hospital that I should move to a hot country because the heat like softens it, but the cold cracks it and makes it worse, and like makes it all dry and then obviously it flakes more.

So, do you have to do different treatments in winter or?

We did the same treatment, it was just I had to like wrap up warmer. And I couldn’t play out in the snow if it snowed that much because my skin would get too cold really quickly. Cos my skin was so sensitive.

Megan’s had some difficulties with her ankle which her doctor thinks might be related to psoriatic arthritis.

Are there any other sort of health conditions that you have that are related to psoriasis at all?

They're not sure if I have arthritis in my ankle, my right ankle, because I had to go to A&E, and because they looked on my medical they, cos arthritis and psoriasis are linked, they're not sure if I was getting arthritis in my ankle.

How did you sort of first notice that there's something different with your ankle?

I was sat on the sofa; I stood up and I couldn’t put pressure on it. And then I went to bed, and in the morning I couldn’t walk on it at all, and I was hopping around everywhere. And I went to the doctors, and they weren't sure if I'd done something to the ligaments or the muscle overnight, and we went up the A&E and they said they were going to do blood tests and everything, and then looked on my medical history and said that it's probably something to do with arthritis, and if it happens again to go back and they’ll do tests. 

Megan’s sister briefly had a psoriasis flare-up and they went to dermatology appointments together.

One of my other sisters got diagnosed with psoriasis, so me and her used to go together; we used to be like, wake up early and be like, "We've got the hospital today." But I felt better when she came, cos I like felt like I wasn’t on my own, it made me feel a bit like more secure. Like going on my own to the hospital, I got really scared. Like, loads of people would look at me when I was sat on the bus, and like I felt really self-conscious, but when my sister was there, me and her were just like, "Well, there's two of us, you can't really look at one of us weirdly," like. 

But hers went really quickly, she only had it for like a year so hers went really quickly, so then she stopped coming to the appointments with me. 

It's still easy to talk to her cos she kind of understands everything. So, we kind of like talk to each other and make sure everything's OK. And she's kind of like, I guess she's like my best friend; like I can talk to her about anything, so as soon as I come from the hospital, she'll be the first person that asks me. Like she'll walk in the door, and like it'll be the first thing she says. She won't say “Hi” or anything, it goes like, "How was the hospital?" and then like that makes me feel better that I know I can talk to her about it. 

Megan would like to be a nurse – something which is inspired by the positive experience she’s had with her dermatology nurses.

What about a job in the future, do you think your psoriasis might affect any future jobs you'd like to do?

I really hope that it doesn’t affect what I want to do in the future. But, as I want to be a nurse, like a play nurse, because of obviously my story of psoriasis I kind of learned to know most of the nurses there, so I kind of like, they inspired me to be like a nurse when I'm older, and that’s what I want to do. And I think – I don’t think it would affect that because of like I'd be more worried about other children, and making them happy.

Yeah. Could you say a bit more about the nurses, and how sort of meeting them and getting to know them has sort of inspired to want to do something like that?

I've met loads of nurses over like the period of my nine years, and they all like made me feel really special and happy. And it’d just be some of the comments they'd say to me sometimes like, I'd be walking for a blood test, and cos I didn’t like them I'd get myself really worked up, especially when I was like nine. And they'd always used to put in little comments that would make me smile.

Or when I was having blood tests they'd play with me, and like make me happier, and like that’s kind of inspired me because they made me happy, and I want to make other children happy, so that they feel what I felt when I was at the hospital. 

Megan has different topical steroids for parts of her body. She also uses bath oils/emollients and a medicated shampoo.

Did you say you’ve got different creams for different parts of the body?

Yeah and that was really confusing. Like, because I couldn’t use the cream that I had for my body on my face, because of it, I think it was steroid, or something, so I couldn’t use it on my face. So, I had to like label my creams of like ‘Body’, ‘Hair’, ‘Face’; and then I also had one that I needed to put in the bath, and I had one that I had to put on after the bath, and it was all really confusing. But we labelled them and kept them all together, so that we knew which one was which.

Megan felt excited about going for phototherapy treatment, but there were downsides too.

What about when you had to go to the hospital for the phototherapy treatments?

I have to wake up really early, cos my mum and dad don’t drive. So, we had to get the bus every other day – so it was Monday, Wednesday and Friday. And so I'd wake up really early and be prepared, but I always got excited, I don’t know why, like I felt like, 'Oh I'm going into the hospital today,' and I got really excited about it, cos I liked the fact of going into a box, I don’t know why, with like ultra-violet light, I liked that. So, I got really excited like every time I had it, and I was like up, ready. We'd go to the hospital, and I'd like have it done, and then I couldn’t go out in the sun afterwards because it would burn my skin, so I'd kind of just hide inside. 

Megan’s blood tests showed a problem with her taking methotrexate. She started having biological injections instead and now only uses topical treatments.

It worked, but it also made me feel really sick all the time, and like sometimes I was sick after I took it. So, they started monitoring it, and I had to have monthly blood tests, and then cos my liver function dropped I had them every week, like every Thursday. And then my liver function dropped again, so they said that I shouldn’t be taking them, so I stopped taking them, and then got put on my injections. And my injections worked, and I had to do them every week, like on alternated legs, so that I didn’t like put it too much in one leg. And I did that for six months, and then I got took off them as well because of some of the complications with my liver again.

And then a few months-, I think it was last month, I went to the hospital and all I need is creams cos the injections worked, and they turn off whatever switch was on, but they just didn’t agree with my liver, so I couldn’t take them.

Megan’s doctors have asked her about the emotional side of psoriasis since she was diagnosed at age seven. She thinks it affected her more as a teenager.

They asked how I was dealing with it quite a lot, because I used to, like question people. I used to question quite a lot of people about it, and like ask loads of questions to people. But I don’t think psoriasis hit me emotionally; like it did make me feel quite down at times, and as I got older it made me feel worse at points when people were like saying horrible stuff; and I couldn’t wear what I wanted. I couldn’t do the activities I wanted to do, but then after that I kind of just got to grips with it, and realised there's no point getting myself down, cos I'm dealing with it and it will get better, so there's no point getting myself down about it.

Why do you think it's started affecting you a bit more as you got older? 

It kind of took, like, because of my clothing that I wanted to wear what I wanted to wear, and I wanted to wear make-up, and I wanted to do this and like go swimming and everything, but I couldn’t because I couldn’t, like I was scared to go out in like shorts because I'm scared people will like laugh at me or anything, or be horrible. Because I used to walk round and like get funny looks off of people, and I was scared that would happen if I walked round in like the clothes I wanted to. And then I couldn’t wear make-up cos it would affect it. And then the chlorine used to sting my psoriasis, and so did the sea. And they say that it was good for it but it really hurt and stung, so I didn’t wanna like do that.

Megan talks about having biological medicine injections.

And then my injections, I kind of remembered cos I didn’t like the thought of a needle, so every time it got to that day, I associated it with a needle.

Yeah

So, all day I'd be prepared to come home and have a needle put in my leg and that would be like the needle day [laughs].

And would you do the injections yourself, or would one of your parents do it for you?

My mum did them for me cos I was really worried that I would do it wrong, and I didn’t want to muck it up. So, I got my mum to do it. I could’ve done it myself but I didn’t like the fact of putting it in my leg, and like in case they stuck it in the muscle or the vein or something, I didn’t want to muck it up, and then cause myself an injury. And my mum knew what she was doing so.

At first I didn’t like the thought of it because I don’t really like needles, so I didn’t really like the thought of injections going into my legs. But because I'd had loads and loads of blood tests before, I don’t think it would have affected me as much. If I hadn’t have had the blood tests I think I'd have been even worse than I was.

But I kind of learned that I had to do it, because if I didn’t do it, it was going to get worse. And then, after a while, I just got the hang of doing it, and it didn’t really affect me anymore.

Megan had to fit her biological medicine injections around her family life.

We did my treatments on a Wednesday, and it was very busy, because like of clubs and everything that my sisters did. But it kind of, it made it like more hectic, but it kind of just, kind of fitted in. Like we'd have like a routine – like while my mum was helping me do my injections, my dad would cook the dinner, so the girls were ready. And one of my sisters would always come in and like cheer me up. Like, while my mum's putting the needle in, cos I don’t like it, she'd like make me laugh and everything. And then that would be our routine, and then after that we'd go back to just getting ready.

Megan feels strongly that she shouldn’t have to cover up her psoriasis.

It got to the stage last year where I was, I remember I was stood in my living room, and I said to my mum, "I don’t care what people think about my skin; like it's my skin, so I'm just going to wear whatever I wanted." And then I went out last summer in like skirts and everything, and yeah my knees were bad but I just let people look at it, it didn’t really affect me. I think it affected me more when I was younger because I didn’t want to get judged. But it's my skin, and it has nothing to do with anyone else, like they shouldn’t judge it because it's not very nice. So, I just wore whatever I wanted and let people look at it.

And is that your attitude sort of now, still, that you'll wear whatever clothes you want?

Yeah

You won't sort of change your style or your fashion choices?

I did feel quite unconfident in the summer last year when I did it, like I'd go out and I'd get dirty looks, I'd come home. I'd think about it but I'd do it again the next day cos I was trying to prove to myself that I'm not going to let others affect me. Like, I'm dealing with it the best I can, and I've dealed with it for like eight years at this point, so I don’t think it could have affected me much more.

Yeah

So, when the summer came – and I'm prepared for this summer too, cos I'm just gonna, I'm just gonna to do what I did last summer. Like, because most people around here know me, so they know what my skin's like, so I don’t think I'd get like judged, and little kids look at me but then they’ll ask their mums after, and that kind of makes me feel like a bit better. Like they'd go, "Oh what's that on her knee?" and their mums would go to them, "Oh it's psoriasis," and then they'd just shrug it off and walk off, and that makes me feel a bit better. Like, I'm helping them learn about something, because they question their parents about it when they get home and everything and that kind of makes me feel like I'm educating people.

Megan says she’s become a better person through her experience of psoriasis.

And then, as I got like older, I kind of realised, but I still had that thought in my head like, 'Why, why did I get it, why me, not anybody else?' But then I kind of have realised that it's made me stronger. Like, cos I'm-, I know what it's like so I'm prepared to do whatever now for it cos I'm stronger than I was when I was little, and I understand more.

Yeah, yeah. Could you say a bit more about that, about how it's made you a stronger person?

I believe that, because I've been through like most of the treatments, and I've had so many hospital appointments, blood tests, x-rays, everything – I believe that it's made me stronger, like it's made me think about it more, and made me a better person, because I know what other people can go through, and I can help other people that have been through it like I did, and I can be the stronger person. Because, I know when I was seven, I felt like I'd give up and everything because of it, but I've kind of learned that there's more things worse than it, and it's not pretty and it's not very nice to have, but it makes you stronger because you learn to deal with it.

Megan wears bandages at night to help the topical treatments stay on her skin. She thinks it makes her look like “an Egyptian mummy”.

And then, before I'd go to bed, I'd put my cream all over my body, wrap myself up in bandages, and then wait for it to soak in just a little bit, so that when I laid down it didn’t like go all soggy, and the bandages get really wet. So, I like would walk around a bit, probably pacing around, and wait for it to like just soak in a bit, enough so that it wouldn’t get wet, and then go to bed. And then wake up in the morning, take it all off and go again.

How much sort of time do you think your routine with the creams and the bandages would take you?

It took me quite a while. It took like, I think putting the bandages on took like half an hour to an hour, because I had to make sure that I was using the right cream; and then making sure that the bandage wouldn’t affect the cream, so I had to make sure I put it on really carefully, and make sure the cream was still spread out.

And then taking it off in the morning was quite simple, because the cream had dried overnight, so it was quite simple just to take it off in the morning.

Megan talks about some of the ways psoriasis has affected her relationships with her siblings and pets.

I think it's affected my sisters because even though I can talk to them about it, I think it's affected them a bit. Like, at first – I remember us all having this big disagreement about it, and like them calling me names, but then after a while they just kind of realised; and I think it affects them because it affects me. Because when I'm having like a really bad day, and it's really hurting, and it's sore and it's itching, I get really moody.

And then, because I'm moody, they don’t wanna do anything - cos I'm moody and upset – they don’t wanna play; they just want to sit there and be grumpy as well, so it kind of affects them because of it.

Yeah. And does it have any effect on pets at all, cos I know you’ve got a couple of pets?

It affects like my dog, because I can like stroke her and everything but I have to be really careful cos if my skin falls off in front of her, and she eats it or something; and then I don’t really tend to stroke my guinea pigs or my cats, not really.

Megan says she lost a lot of friends when she was younger. She tried to educate her peers when she started secondary school.

It got really hard in like Year Five when loads of people were being really mean. Because they didn’t know what it was, they'd bully me because they didn’t know. So, instead of asking me what it was, they thought it was better just to call me names, and be horrible.

And I remember telling my mum that I didn’t want to go to school. So, I had quite a lot of time off cos I didn’t want to go in because of people like saying stuff to me. But it wasn’t-, I don’t think it's like my skin that affected me at that time; I think it was the fact that loads of people were bullying me. And when I was little, I wanted to be like well liked; like you know when you're a child you want to be well liked.

And then, as soon as like Year Five come, I lost like nearly all of my friends because of it, because of all the bullying, then everyone got involved, and thinking that they were like the better people by sticking up for the others, so I lost mostly everyone.

Wow

So, I didn’t want to go to school or anything.

And then what happened when you moved to secondary school?

I had to explain to everyone. I explained to my whole tutor group on the first day what it was, and it wasn’t contagious and everything. And then I got-, some people said comments like sometimes, but nothing really happened in secondary school. Like people always come up to me like, "Oh what's that on your face?" and everything, but I felt like I could tell them because I'd had more experience than when I was in primary school. I didn’t even know in primary school; I just sat there listening to my mum and the doctor, and I'd only pick up on certain things, but as I got older my, like understanding, got better, and then I used to research it more, like, and more, so that I knew more about it, so if anyone asked me I'd be prepared to answer them.

It helped Megan being able to read online about others’ experiences with psoriasis.

I would research it on the Internet and like type in questions about it on the Internet to get results. And then I'd like read what other people have put on like psoriasis helpline groups and things, to see if like anyone had been through what I was been through. This is when I was like 11 cos I felt quite alone, because no one really understood; like no one else had it, and no one else really understood me, so I felt like if I researched then maybe other people would understand me. I never wrote my story on it because I was only little, but I read what other people wrote and thought-, and impacted it on my own, on my own life.

Is that something that you still do now, looking online for some information?

Yeah

Yeah? Do you use the similar places, like the psoriasis support sites?

Yeah, I kind of research it just to see what other people write and like everything.

Do you find it-, how do you find it when you read other people's stories of having psoriasis?

I find it quite like helpful, but I feel quite sorry for some people who have it. But like people write things, and then I just kind of-, I like think, 'I did that and it's not actually like that bad.' Everyone, loads of people who don’t have psoriasis say things like, “Oh, having this is that bad, and having this is that bad,” to do with psoriasis. But if you’ve been through it, the thought of it is not very nice, like the thought of doing like one of the treatments isn't very nice. But as soon as you’ve done it, it makes you feel better.

So, you kind of feel happier that you did it, even though you had so many thoughts beforehand that you didn’t want to do it.