Ella

Age at interview: 16

Age at diagnosis: 3

Brief Outline: Ella has had psoriasis since she was 3. Although Ella is more confident now that her psoriasis is well-controlled with creams, she highlights that it can be “another layer” of worry for body confidence for young women in particular.

Background: Ella is 16 years old and an A-level student. Her ethnicity is White English.

More about me...

Ella has had psoriasis since the age of 3. Her first memory of having psoriasis was being kept in hospital for about a week after a bad reaction to a tar-based cream. Ella’s psoriasis tends to be on her elbows, upper chest, around the edges of her face and on/in her ears. Having psoriasis around her hairline and ears is difficult because Ella has to put her hair up in a ponytail for her part-time job and she worries that everyone can see it. Ella thinks that her psoriasis looks a bit like a rash, as it’s usually raised red skin with skin flaking but can vary depending on where it is on the body. Around the age of 13/14, Ella would get quite severe psoriasis in her ear canals. The skin flakes would block her ears, making it very painful and she was unable to hear. She tried ear drops and the doctors used water to try and flush out the blockage (ear irrigation), but this made the problem worse. One treatment which worked well was microsuction, in which a tube is used to suck out the blockage. Ella would go for this treatment at the hospital every couple of months alongside using the ear drops and it would almost instantly return her hearing to normal. 

Most of Ella’s psoriasis treatments have been steroid creams, moisturisers and Protopic from her GP and dermatologist. One downside is that the creams are greasy and this can be a problem for controlling some teenage acne on her face. Ella says it’s a balance looking after her skin to manage both the psoriasis and the acne. Another thing Ella uses for her psoriasis are non-soap based showering products which she says smell nice. Ella was offered light therapy treatment but turned it down as she has always found that her psoriasis becomes more severe in the summer. Ella thinks that she will soon be attending dermatology appointments without her parents, so that she can talk more directly with her dermatologist about her concerns rather than only listening. This is related to the fact that, as she got older, Ella and her parents realised that they hadn’t ever talked much about what psoriasis is or what the creams do because she had it since such a young age.

As Ella started to get older and was at secondary school, she felt self-conscious about people looking at her psoriasis. Some pupils in secondary school made nasty comments about her psoriasis; Ella confidently spoke back and challenged what they were saying. She’s often surprised that people assume psoriasis is contagious. Ella says that she doesn’t mind explaining psoriasis to someone, unless they have been rude or mean. Ella sometimes struggles to concentrate because she will “fixate” on the psoriasis. For example, she will sometimes sit in classes in a way which tries to casually cover the psoriasis around her face and this distracts her from engaging fully. Ella describes having psoriasis as yet “another layer” of worry for body confidence to struggle with, especially for girls and young women. She doesn’t want any photographs of her on social media to show any patches, partly because she doesn’t want psoriasis to be “what I’m known for” and overshadow her whole personality. Ella tries to cover up her psoriasis when possible, such as by wearing her hair down or with a side-parting and wearing clothes with long sleeves or high necklines. Ella has also looked online for ways to cover up her psoriasis with make-up, but didn’t find anything really suitable for her skin. 

Ella has a strict routine of applying her creams at night and thinks that this is why her psoriasis is so well controlled at the moment. She says that doctors would prefer her to apply the creams twice a day (e.g. once in the morning also). However, Ella says she doesn’t want to because it’s time-consuming, makes her skin and hairline greasy, and she can’t put her make-up on top of the creams. Ella suggests that doctors should think about “how the treatments are going to affect the patient’s day-to-day life” rather than expecting everyone to be able to follow treatment advice to the letter. She thinks that being aware of the emotional side of psoriasis is important too. Her advice to other young people with psoriasis is that “it probably isn't as bad as you think it is” and that it’s other people’s problem if they take issue with you having psoriasis. 

Ella feels self-conscious about skin flaking and finds it’s difficult to cover her psoriasis with make-up.

And like there's only a certain extent that I can cover it up, like with foundation and-. Because, because it's not just-, like with acne you can cover the redness, but with psoriasis it's like the skin is quite flaky. So when you cover it, it sort of makes it more obvious because like it sort of flakes and so everyone can see it and that can be really difficult because when you're trying to like work and you can see like people are looking at it – that’s what I hate the most; I'll be having a conversation with someone and they won't be looking in my eyes; they’ll be looking like-, they’ll just be like looking slightly off, like off my eyes. I'm like, 'I know what you're looking at,' and like it shouldn’t bother me because obviously like if someone had a mole on their face like you'd look at that without helping yourself. But I can just tell-, I can-, and I notice it and it, it's like oh it just bugs me because I'm like, 'I know you're looking at it,' and that makes me more self-conscious because I know they can see it and- When it's on my body it's fine cos I can wear a jumper or wear a long sleeved top and it doesn’t matter, but when it's on your face and you have to put your hair up for sport or for work, you can't do anything about it even if you try and cover it up. And when you're having like a rough day and it's got quite bad, there's nothing you can do about it.

What would you do in that situation if you sort of got the feeling that somebody was looking at a patch of psoriasis?

Well if it was someone I knew like quite well, I would tell them what it was and explain to it. But if it's someone who I don’t know I just-, I think I'd just-, I think I'd just sit through it because I don’t think there's much that you can do at that point. I wouldn’t want to go, "Oh can you stop looking there," like because then that would make the other person feel embarrassed, so I think I would just- would just leave it and let them look at it and it's not going to hurt me from them doing that. 

Ella’s choice of clothing has been shaped by having psoriasis on her chest.

All my clothes are all high necked which is fine because I can wear like vests with a high neck which is quite fashionable at the moment, which is fine. But I would just like that option to have-, to wear something a little bit more low cut, but I really don’t feel comfortable, and even if I didn’t have any psoriasis there I would still not feel very comfortable with like having my chest-. I don’t know, I think it's just because I've had psoriasis there for such a long time that just like subconsciously , subconsciously I just think, 'oh no you can't wear anything low cut, you shouldn’t.' Even if there isn’t anything there I just-, that’s something that I just think automatically. And then if there's something-, if I wanna wear-, if it's a really hot day and I want to wear a vest or something and I have psoriasis like underneath my arms or like on my shoulders, or like, yeah, or like on my shoulders or my upper chest, then like I can't wear that sort of thing and it's like I'll be wearing a like a cardigan or a hoody all day which I don’t want to cos it might get really, really hot but I just don’t want to take it off because I have psoriasis there. 

Ella’s less worried about her clothing choices now she feels in control of her psoriasis.

And I think now I'm sort of getting like I don’t really care like about that, but like especially when I was at-, a bit younger like early teenager, like I wouldn’t want to wear anything that wasn’t long sleeve or three quarter length sleeve, or anything like that. 

Why do you think that change might be happening for you whereby you're feeling a little bit more comfortable?

Yeah. I think it's because my psoriasis is fairly under control now. Like I am- I put my creams on every single night so they're not-, so my psoriasis isn’t as bad, but I think it's also with my attitude to it as well. Like I don’t really care if people can see the psoriasis on the back of my elbows, like that’s not somewhere people like will automatically look, so I'm fine with wearing t-shirts and things. But I think also where my psoriasis is it's quite easy to cover up. Even if I wanted to wear a crop top or something like that, like it would be fine; like I have no psoriasis there so people wouldn’t be able to see it. But definitely like I do have some psoriasis right here [points to chest] at the moment, so I wouldn’t wear anything that was maybe a little bit more low cut or anything. 

Ella’s explains about psoriasis to her peers but finds their responses can be hurtful and frustrating.

So, I turned around and I was-, and they were like, "What is wrong with your ear?" and I was like and then I explained what it was and they were like, "Is it contagious?" that was the first thing that they said, "Is it contagious?" So, I was like, "No, like why would it be contagious?" like. And I have been asked that like quite a few times, and I'm so surprised. Like, if you hear-, I was like, “Oh I have a skin condition,” they're like, "Is that contagious?" It's like is acne contagious; is eczema contagious? Like just because you haven't heard about it before like it doesn’t mean you should judge it, or just because it looks a bit different to like what you're used to. Argh, just like it gets me really annoyed when people ask stupid things like that. Like if you want to ask and you like-, you're just curious and you want to ask, then I'm fine explaining to people like what it is. Usually now it's not as noticeable so I don’t get it as much, but when it was quite bad people would ask quite a lot, which is fine. I'm fine to explain but if you're rude about it, or if you're mean about it, especially if you're bullying or like just being mean then just-, it just really upsets me. 

Ella talks about some of her psoriasis triggers.

Well I've been told by my dermatologist to not use soap – like that make bubbles on my body – cos like I think that can aggravate it and make it worse. So I use non-soap based products when I wash my body and wash my face and stuff. Hm I think concealer and foundation is fine as long as I don’t put loads on. I'm trying to think – triggers. Well, it's been said that like sunlight helps psoriasis quite a lot, but for me I always say my psoriasis is worse during the summer, so I don’t know whether that’s just me, but usually-. And when I'm ill or-, yeah, when I'm ill as well that can sometimes cos obviously like with my immune system working as well, if I'm ill then that can trigger it as well because it's working and I don’t know how much of a correlation that has, but often when I'm ill my psoriasis is quite bad as well.

Having psoriasis in and around her ears caused complications, including temporary hearing problems, for Ella.

I think around when I was 13, 14 was when it was in my ears most, and I have quite small, like unusually small ear canals, so with the psoriasis in there it would like get really, really blocked up and I wouldn’t be able to hear very well, like I would be partially deaf like in my ears. So, they tried a load of ways to try and get that out from drops, I had quite a lot of ear drops, to ear washes which was when they like-, I don’t know what they did, but I think they like poured water in my ear to try and get it out, but we found that made it worse. So, I don’t know exactly what it was called but I used to like go to the hospital quite a lot- to [hospital name] and I would get, they would like [laughs], I don’t know what it is without making it sound a bit weird, but they would like suck it out with a little like tube. They'd like-, they'd suck out all the excess like psoriasis that was in there to like-, and like as soon as that was-, that happened like I could hear like perfectly fine. It would-, everything would seem really, really loud because I'd been living with like being like partially deaf. So, yeah, I would go for that like every like two months or something to get it cleared out cos it was quite bad, all the while like doing the drops and everything. And then now as I've come into college, and at the end of the end of secondary school it's been fine; I have nothing in my ears anymore, and fingers crossed it doesn’t come back because I think that was one of the worst-, cos it would be quite painful in there. Like, when it would get blocked up, I'd get quite a lot of earaches and ear infections.

Ella finds acne treatments dry out and irritate her psoriasis, whilst psoriasis treatments are greasy on her acne.

It can get-, and so it's hard, so like if I'm trying to treat my acne and my psoriasis at the same time then it's like I have like two things to worry about; like most people just like, they're trying to keep their acne under control – well I have to keep my acne and my psoriasis under control which are like two different- two different things to worry about. So, if I'm trying to like scrub my face to help my acne, to exfoliate my face, then that can sometimes like not be very good for my psoriasis. So, it's just trying to keep that balance, like do I want my psoriasis to be really good or do I want my acne to be really good; it's like trying to find that in-between stage where both are like kept under control.

The creams can be quite greasy. I do have one which is like more of a like a creamy texture rather than my other ones which are sort of more like gel like so they're translucent, but they can be really greasy which is like when I'm trying to moisturise my face as well, for my acne I've had some trouble with that because obviously it's not the best to have greasy like-, have grease, like as soon as I moisturise my face I have to put the gels on so it can be really greasy.

Ella stayed in hospital for about a week. She remembers being frightened.

When I went to hospital I was about three. Just before I'd-, just before I was starting primary school so maybe like four, about three or four. And it was because I-, they put me on a-, I think it was a tar-based cream they were trying out and that didn’t react well with my skin at all and it really flared up. And I think-, can't remember exactly, but say that [holds up palm] is one percent of my body, it was sixteen percent that was covered with psoriasis, so if you look at that, that’s quite a lot. So I went to hospital and I had to have these sort of bandages sleeves that they would put cr-, they would put cream on and then put- put it like on my arms so that I have it on my arms or my legs and then on my body as well, and I really remember that, like having that underneath like my nightdress. And I think-, I can't remember exactly why I was there but it was because my psoriasis had got really bad, but I think also they wanted to put a, an IV drip into my hand, and. I can really, really vividly remember them not being able to find like a vein to put it in, and so they tried to do it in both of my hands and both of my feet, like failing each time. And I remember just finding that completely terrible and then I got really scared of needles because of that. 

Like that being quite a traumatic memory, obviously I'm fine with it now; I'm fine with needles. And it probably wasn’t as bad as I remember but, yeah, that was quite hard, especially because I was in a place I didn’t really know, like my parents weren’t allowed to be there all the time. And they’re coming up with needles and it wasn’t the most-, for a three year old that can be quite traumatic. I think, yeah, I probably am blowing it out of proportion because of what I can remember, but still that was quite a traumatic like memory for me. 

Ella thinks doctors are sometimes unaware about the impracticalities of treatments in young people’s lives.

I think one of the things that I've always had is the doctors going, "Right, here's your creams and you have to put them on twice a day, every day, you have to use these certain shampoos, these certain soaps and everything like that, and you have to use them." And I think while obviously they know exactly what they're talking about, it can be difficult to- to do exactly what they say, like I probably should be putting my creams on twice a day, every day, but I only put it on once a day because I literally don’t have the time in the morning to put them on in the morning, and if I did put them on in the morning then my skin would not feel very nice – like it would feel greasy especially on the places that I put it, especially on my face. If I was going to try and put my cream on and then put my make-up on, like I would have greasy skin for the rest of the day and that’s not something that I really want to deal with. So, I think doctors, while they do know what they're talking about, they should think about how the treatments are going to affect the patient's day-to-day life. Like some people don’t have the time to- to do like what the doctors have told them, twice-, if they have to do it twice a day – they don’t have time to do that.

Ella will soon be treated under adult dermatology and thinks this will mean being more independent.

Is it at 18 that you'll probably be referred onto the adult dermatologist?

Yeah.

Yeah. Have they sort of talked about what the differenced might be with adult dermatology?

Not really because whenever I go it's with my parents, and because I've had it from such an early age, they’ve always dealt with the creams and the prescriptions and the treatment and everything like that. And I've just like been there as the person who needs the help with it. So I think I do really need to get-, start getting into like knowing more about it myself and like knowing what my treatments are and like maybe even going to the appointments by myself to-, cos otherwise it will just be my mum talking to the dermatologist rather than actually me and my experience talking-, talking to him. 

Moisturising her face helps Ella’s psoriasis but can be tricky with acne.

The creams can be quite greasy. I do have one which is like more of a like a creamy texture rather than my other ones which are sort of more like gel like so they're translucent, but they can be really greasy which is like when I'm trying to moisturise my face as well, for my acne I've had some trouble with that because obviously it's not the best to have greasy like-, have grease, like as soon as I moisturise my face I have to put the gels on so it can be really greasy which-. And it can get into my hair as well, especially when putting it around my face, which isn’t a problem but it's like if I've washed my hair and then put my creams on and then my hair is greasy, and it's just like little things like that which are quite cosmetic but, so that they don’t really like have any like medical issues or anything, but it can be quite annoying for me like with my, yeah, appearance. 

Ella says using topical steroids is an extra thing to fit in.

Could I ask a bit about that in relation to your creams and how long it takes you to do those per day?

Yeah. It doesn’t take long at all but it's just-, it's like doing anything else really; it's like, it's just another thing added to it, like if I'm going to take off my make-up and then wash my face and then exfoliate my face, then moisturise and then put my creams on, you know it's a lot of things I have to think about every day. And then if I'm gonna wash my hair, like have a shower, that’s like another thing that I have to think about. And sometimes other things are more important like my social life or like school work and things like that. Sometimes-, or like I have ten minutes before I have to go to bed: shall I do ten minutes of work or ten minutes of relaxing or should I like do my skin routine? Like it's just different – what should I decide to do?

Ella’s friends are supportive and try to reassure her when she feels self-conscious.

Yeah. It's really not affected at all. Most people are really, really supportive. It's not something that-, it's like-, I think it's on the same level as acne; like my friends wouldn’t judge me for how I looked; I won't judge them for how they look, so psoriasis is just like another part of that really. I think definitely with like relationships, like if I wanted a boyfriend then maybe that would be more -, like it has in the past, like has sort of like-, I've sort of struggled with that. Like, well if it's just like on my face and things it's like explaining like what it is and then maybe thinking that I'm not like-, I'm not attractive because of that which like when I've like been feeling quite like self-conscious about my psoriasis, when I've. It's been like-, even if it's not been that bad and I just have had a really like bad-, like say for a month it's been quite bad then going ‘well, boys won't find me attractive because it's really like-, it's really noticeable, everyone can see it, it's right on my face’, and I can get like quite distracted by it at school or at like social events like, ‘alright OK everyone can see it, it's on my face like, everyone's looking at it’. Like they might not even like it might be like- like no-one notices it, and I might even ask, I might even ask my friend and go, "Oh can you see it on my face; is it really noticeable?" and them going, "What, what are you talking about? I can't see anything." But like because I know it's there like I fixate on it and I can like, in like my mind's eye I'm like ‘everyone can see it, everyone's looking at me’. Even when they're not – they probably even aren't, they probably haven’t even noticed but I think if you know it's there like it just, for me it really distracts me.

Ella remembers a time when hurtful comments were made at school about psoriasis on her ears.

I can't really remember much with primary school. I remember -, cos we'd all- obviously all had to get changed for PE, altogether, and I remember sometimes people like pointing it out or asking what it was, but I never remember really – in primary school, that is – never really remember getting bullied or anything for it. But in secondary school I did quite a lot because it was then when it was all in my-, all in my ears, like it would all get really like blocked up and I wouldn’t be able to hear, and like all in this part of my ear [gestures to outer of ear/cartilage] it would get quite crusted up and everything. So then obviously when I did PE then I'd have to put my hair back cos obviously I'd always wear my hair down otherwise to cove -, to try and cover it. But then I had to put my hair in a ponytail and I just remember these two girls like sat just behind me, like looking at it and pointing and like whispering about it. And I think it was just the one time that happened and these girls were not-, they were not very nice girls – like they had a reputation for not being very nice. And I just remember them pointing at it and whispering and going, "Ergh that’s disgusting; like does she not wash her-, wash herself or anything like that?" And like I've always been quite a confident person; like I always have no problem like going up to people, and I turned around, I went, "If you have something to say you should talk to me; I can explain what it is." I didn’t say in that nice a way [laugh] but you know I was quite angry with that. It was like there was no reason for them to do that; it's none of their business and it was just like a really mean thing to do. So, I turned around and I was-, and they were like, "What is wrong with your ear?" and I was like and then I explained what it was and they were like, "Is it contagious?" that was the first thing that they said, "Is it contagious?" So, I was like, "No, like why would it be contagious?" like. And I have been asked that like quite a few times, and I'm so surprised. Like, if you hear-, I was like, “Oh I have a skin condition,” they're like, "Is that contagious?" It's like - Is acne contagious; is eczema contagious? Like just because you haven't heard about it before like it doesn’t mean you should judge it, or just because it looks a bit different to like what you're used to.