I remember thinking I really don’t want this to be psoriasis because I know it’s never gonna go away. And I did feel a bit disheartened when they said, This is psoriasis. And they printed- out, on my first doctor’s appointment they printed out this massive leaflet and they said, Do look at websites, and it kind of-, they said it’s linked with heart diseases when you’re older. They didn’t tell me it’s linked with arthritis, they didn’t tell me it’s linked with depression, they didn’t really-, what was annoying is that we’ve kind of had to find out a lot for ourselves. They didn’t tell me the different types or- of psoriasis that there, or where I could like, they didn’t tell me where to look out for it in a way which is annoying because it’s kind of you’re finding out for yourself. So I think my main like annoying point is that I knew I could never get rid of it and it’s always going to be there and especially when I’m stressed, which is kind of handy knowing that like when my skin flares up I know I need to change something.

So, psoriatic arthritis is similar to the inflammation you get in the skin. You can get an inflammation in the joints. And probably in about ten to fifteen percent of people you can get that inflammation in the joints. That can come before the skin, with the skin, after the skin manifestations, and it can happen in, you know-. It sometimes-, more often associated with nail psoriasis, so lifting of the nails or pitting of the nails can be seen in people with joint disease as well. And it’s a destructive arthritis. So it’s very important to get that treated by a rheumatologist, because there’s inflammation in the joints, you can actually get destruction of the joints as well. And that would definitely be an indication for thinking about tablet treatments for psoriasis.

And you mentioned about psoriatic arthritis and joint pain earlier.

[mmhm]

Is that something that’s been relevant to your experience?

Yeah, that, I’ve have not had any symptoms of that, but it’s something that really worries me. And I think most people with psoriasis, if they’ve done their research, know that they are more likely to get psoriatic arthritis than like obviously people who’ve never had psoriasis before. So I always live in fear of that because psoriatic-, psoriatic arthritis tends to not come that late in life, it’s not something that affects like 80 and plus people. A lot of people on the forums were experiencing psoriatic arthritis as early as 30 and it wasn’t just the odd case, there were quite a few people. So that really worries me. And it’s something I do often think about, like I kind of always sort of check my joints and, you know, try and notice if there’s any like pains in my body. And I think that most young people probably don’t think about every little ache and pain and every time they’ve pulled something, as much as maybe you would if you had psoriasis and you were aware that psoriatic arthritis could, you know, be coming.

Is that something that you talk to your dermatologist or your GP about?

I feel like I probably would have mentioned it once, but then they just say you know, We’ll cross that bridge when we come to it. And there’s, you know, you, There’s no guarantee you will get it. You know, you’re more likely, but then you know you’re more likely to get heart disease apparently if you have psoriasis and all the other kinds of things. So, with autoimmune like drugs, like with immune like system drugs, you’re more to get loads of things. So it’s kind of like hard to kind of keep dwelling on what you, what you could get, because it’s just such a long list.

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.

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].

I was probably on antibiotics for about seven or eight years, eventually I just said that, to my GP when they offered them to me that I didn’t want them because my feet would be, they’d go from absolutely horrible and I couldn’t walk on them to almost, you know, they were pretty comfortable and I could walk fine and then as soon as you stop the course of antibiotics they went straight back downhill. So it just felt worse and worse so I just decided to just live with the pain.

And did you stop?

Yeh I stopped the antibiotics.

Had you been on them sort of continually or were they sort of kind of periods of treatment and then on and off?

I went through a phase of like I was just continuously on them.

Okay.

But most of the time it would be like I’d be on them for a week or two.

And then I’d have another week off them and my feet would go downhill and after about two or three weeks I just couldn’t walk again so we’d go back on them. And I just decided I’d stick with not taking them.

It’s definitely worth talking to a counsellor if you can and either going through your dermatologist and talking about the fact that you’d like some support or like looking for it independently if you don’t feel like you need someone who deals with specifically skin conditions. But I felt like it, that one session that I did have it was nice to speak to somebody in the hospital at the same time as going for an appointment. And somebody who I know deals specifically with skin conditions because I do feel like it’s a different kind of depression because it is linked so much to how-, to a condition and how you feel about yourself. And it’s not abstract like you don’t know why you are upset. You know why. And you, you have this root cause and it’s about dealing with something that you might have for the rest of your life and you probably will and you’ll probably be trying things for it forever and it’s about coping with that. And I think that it’s completely normal to find it hard to cope with the idea of having something forever. Even if it isn’t gonna to kill you, it’s still hard to cope with the idea of something might never go away fully. So it’s worth talking to someone.

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.

Travel is something I’ve only sort of started thinking about now because it’s only on biologics where you can’t have live vaccines. And I only started Stelara in December, I hadn’t had any plans to go traveling until now and I want to go away to South America. But some areas you need the yellow fever vaccination which is live so there was some restrictions there. And I think that that is really difficult when you’re young. I mean I am getting to the stage now when I am going to go into full time work, so it’s not as much of a factor. But definitely for people thinking about taking gap years, or like going away after school and uni and things that, you know, it is like difficult to have to factor that in. And also even without the vacc-, if you put the vaccinations aside, just the fact that you have a lower immune system and you’re going to countries where you know, like food isn’t as clean and water is-, and like you know the conditions make you feel like you’re more likely ill to get ill, so you kind of tend to worry about things as if you’re like an elderly person because you know that your immune system you know might not be able to handle it and you’re more susceptible to getting ill than the rest of your friends would be.

I know I spent a lot of time in hospital. We never really spoke in much depth about psoriasis when I was younger. I do have one memory, I’m not sure how old I was but my foot was extremely itchy and so I itched it on the carpet in my bedroom and this, I don’t know, blood just kept coming out and I don’t know I just, I came out into the dining room and mum and dad were there and so they took me straight to the hospital and it was a bit of a nightmare cos the first hospital we went to we weren’t accepted to or something so I remember getting back in the car with dad carrying me back in the car and driving to another hospital and my foot just wouldn’t stop bleeding really. Yes that was, that was quite scary, it was a long day as well I think I was probably about four to be honest.

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.