Do you remember what you thought when you first started to get some small patches on your trunk of psoriasis?

Yeah, so my first thought was, was quite panicked to be honest. I think that most people when that kind of thing springs up you just think why am I getting this? What is this? Is it like, you know, some sort of tropical disease that I’ve caught over the summer? Like is it cancer?’ you know, y- you just don’t know at all. But yeah, I think just looking up on the internet it was quite, it’s quite easy to tell, especially with like the guttate psoriasis, it’s quite easy to tell exactly what it is.

So that was that. What did find when you searched in the terms that you were looking for, that psoriasis was automatically the first thing that came up?

Yeah, pretty much, yeah. So it’s, it’s just so recognisable and there are pictures up on the internet now that straight away, you know, I could tell. Obviously, you know, I wasn’t a 100 percent sure until I’d been to the doctors. But yeah, I mean I was quite, quite certain, reasonably relieved.

Did you do any research online about psoriasis during that time?

I didn’t really do that much. If you go online and start trying to look up skin conditions, you quite quickly get into a- a bit of a sea of something-it is and something-else-itis and this-iasis and that and the other, and all of them sound the same. Red, itchy rash; some of them are here, some of them are there. But they all effectively sound the same. So I quickly realised that I wasn’t going to get anywhere from trying to diagnose myself, I would trust the doctors I was seeing to hopefully do the best- like do the right thing. And even though they couldn’t say it’s definitely this or it’s definitely that, and maybe one week they’d say this, and then the next week it looks a bit more like this, I don’t think that yeah. I don’t- I don’t think in my case it was useful to try-, to spend all day trying to work out what it was and Wikipedia this and that and the other symptom, because it wouldn’t really shed any light on it, it would just make it a bit more confused. But I think it did make a difference when it was sort of confirmed, as it much as it can be, as a psoriasis, that I could sort of- it had a certain set of symptoms that were- were psoriasis as opposed to being a sort of general dermatitis or an eczema or this, that and the other.

I was with my girlfriend and she looked at that and was like Don’t read too much into the internet because well you know there’s so much out there and things like that and I knew she was right and kind of knew the same myself but it’s much more difficult to see that when you’re the one who’s googling something that you think you have. So it was nice in that way to have someone else sort of telling you to be rational and reasonable because it’s harder when it’s about you, if that makes sense.

Was there anything else when you were googling that you thought it might have been?

Nothing from memory, no, no. I think the only other thing I kind of assumed it was either just dry skin or maybe, or maybe eczema and then obviously there’s always the irrational part of you that thinks it was some horrible tropical disease that you’ve picked up but when you kind of rationalise it you know that it’s probably not and of course it wasn’t, so.

Twitter, I’ve tweeted about it quite a bit. I’ve been tweeting kind of once a day actually about this treatment and that was how I found this. I can’t remember exactly how, actually. I was looking at something, I think and then as happens with Twitter. Happened to find that the Psoriasis Association I think it was retweeted me a few weeks ago and someone from that followed me. He’d had light therapy that hadn’t helped him. And when I said that I hadn’t had it in the end he said, Oh right, what you having? and he’s kind of keeps like asking questions, which is actually like quite nice. I don’t mind that. I, I, there are a lot of different things that I do on Twitter, different organisations, different groups. And so, it’s kind of just like another one that I write things about. It doesn’t like, in a way I kind of enjoy talking about it, because I think like someone might mention something that I might then be able to use and like try. I think a lot of it is really what works for you and if you see something sometimes it’s worth trying it. But you do get people as well in general being like, Use this. Use this. Someone I know has done this and it’s amazing. And sometimes you think, like really,’ and my Nan, my Nan, bless her, she tries the hardest, but she’s the worst at like, Hi, I saw this thing on the news today about psoriasis and they’ve got a new drug out and da, da, da, da. You should try it. Why don’t you try it? Why aren’t you using it? I am like, Calm down, please [laughs].

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.

Yeah, so mostly sort of health website-, well I guess NHS website. Couple of other like sort of diagnostic websites, is that the right, the right kind of phrase?

And then also the, is it The Psoriasis Association? I think website as well that has all the forms and stuff and that’s where you can see like okay, this is what other people are sort of, they’re going through as well’ and people are going on there talking about, Oh my goodness, this has come up on my arms, as well and stuff like that. And you’re like, yeah, you know, this is happening to other people as well.

Do you ever post on those forums yourself?

Nah, I don’t, I’m not-. I’ve never really been on-, been that kind of person with [laughs] sort of contributing to forums. I’m more the kind of person that go on and read bits other people have, have written.

Does that tend to be sort of practical information or is it also sort of the more emotional support, if there is an emotional side to you for psoriasis?

Yeah, yeah, it sometimes is I guess, yeah. It sometimes is. Sometimes it’s, that’s actually how I, how I came across this. Sometimes I’ll just type it into Twitter and see what people are saying and you just get the, these amazing short little things of someone being like, you know, My bloody psoriasis is flaring up again [rarara], I’m just like yeah, these people are going through the same thing,’ you know. Yeah so, in a way, it’s, it is quite therapeutic but yeah, I guess I don’t do it all that often but sometimes when it is, it’s quite bad, I do.

With psoriasis though, I’ve struggled to find more beefy, I think is the best way of putting it, information. The bones were there. But there was no meat on those bones and to like, I’m quite inquisitive with things. I like to know what’s going on. I like to know exactly, like as much as I can understand the reason. And, you know you look up something more common and like this sounds really, I don’t wanna sound like almost cruel and heartless. But if you look up cancer there are a 100,000, not, obviously because it’s far more common than this but there are hundreds of thousands of web pages of like in-depth information about what the cells are doing and what type of cancer you’ve got and whatever. And there is stuff about like the different types of psoriasis and that’s kind of where it tends to you know, you can look up at Wikipedia and it goes into like the chemical compound of like what your skin’s doing. And you’re like, yeah, that’s a bit too much actually. [Laughs] Like, calm down. But there wasn’t really anywhere that was kind of like intermediate. I’m lucky that I’ve got dad and I said to dad like, Come on mate, what’s going on? and he kind of like helped me. But it can be difficult to find stuff.