Hannah

Age at interview: 24

Age at diagnosis: 16

Brief Outline:

Hannah was diagnosed with psoriasis at age 16. She found it difficult to accept having a life-long condition and finds that it requires her to think much more about her health than her peers do. Hannah’s current psoriasis treatment is biological injections.

Background:

Hannah is 24 years old, single and a policy researcher. Her ethnic background is British Pakistani.

More about me...

Hannah has had psoriasis since the age of 16. She initially had a small patch on her scalp which she thought might have been dandruff or eczema. When shop-bought anti-dandruff shampoos didn’t help, she visited her GP. She was referred to a dermatologist who diagnosed it as psoriasis. Over time and in response to coming off different medications, her psoriasis has changed in severity and affected locations of her body. She prefers to cover the psoriasis on her arms and legs, for example, with clothing and make-up. She finds that skin flakes can be difficult to remove or hide, especially on her scalp. Hannah finds that winter is worse for her psoriasis, but she’s not sure about other triggers such as foods. There is an emotional part to psoriasis for Hannah, but she’s not sure whether stress and depression are triggers or consequences of having her skin condition.

Hannah has tried a number of treatments, including steroid creams and moisturisers, phototherapy, methotrexate and cyclosporine. However, these treatments either had bad side-effects or eventually stopped working. For example, Hannah tried cyclosporine but stopped after a few months because of headaches, nausea, fatigue and low mood. Her psoriasis then became more severe, meaning that she was then eligible for a biologic injection. Hannah researched about these on a forum and requested Stelara (ustekinumab) from her dermatologist after weighing up the pros and cons. Hannah is very happy with this current treatment because it has reduced her psoriasis coverage to <3% with only a few small patches on her scalp, torso, back and a few fingernails. 

Hannah’s type of psoriasis has changed over time from plaque to guttate psoriasis. She found that the guttate psoriasis was more difficult to treat with creams because it was tricky to apply to the many small droplet-like patches. Stelara has helped clear up these patches but Hannah is now left with pigmentation changes to the skin on her arms and legs. She was not told by her doctors that she might be left with these darker and lighter marks on her skin. She’s sometimes self-conscious about this change to the skin which she says looks like a “leopard.” For Hannah, the slowness of skin in healing is very hard because it involves a lot of waiting rather than instant results.

Hannah found it a struggle to come to terms with having psoriasis. It was difficult to accept having a life-long condition which requires her to think much more about her health than her peers. For instance, she’s is careful to check her joints for psoriatic arthritis. Psoriasis has had a social impact for Hannah, in particular whilst she was on cyclosporine because it impacted on her mood. At that time, psoriasis was all-consuming for her as she felt a need to talk about it a lot with her family whilst trying to hide it from her friends. She didn’t want to go out much and often found herself cancelling plans. It was only once her psoriasis was very well managed with biologic injections and that she felt more confident enough to tell her friends about having psoriasis.

Hannah’s advice to other young people with psoriasis is to research about the condition. Hannah uses forums to learn about psoriasis and hear personal experiences of using different treatments. Hannah’s advice to doctors is to offer more support with the psychological and emotional side of psoriasis. For example, she fills in a questionnaire about how she’s feeling at every dermatology appointment but finds that the results aren’t discussed in detail or acted upon, such as with offers for counselling referrals. 

Hannah finds she often compares her skin to that of others. She hopes the hyperpigmentation from psoriasis will improve with time.

I feel like it's a really strange journey. It's been a really strange journey for me because when it's at its worst you always think ‘I just want it to get even a slight bit better and I'll be happy’ and then when it does, you’re not and you’re just sort of never really satisfied. Because you're always looking at other people's skin. For some reason, you're always comparing yourself to people whose skin seems seemingly perfect. And whenever- with me because of my skin tone being quite tanned, when my psoriasis went, I was left with lots of hyperpigmentation, so I have found myself kind of even being frustrated at that, I mean it was not quite perfect – I can still see where it was and all the marks. So you just- there’s this constant feeling of never being satisfied because it's not like it was before, you know, it had ever existed in your life. And you’re always kind of constantly striving to get to that point where it's like it never happened. And it, that's a really long journey and often it doesn't ever happen where you get to the point where it's just not visible at all. So things were quite hard then to come to terms with when you have psoriasis that, you know, your skin might never be the same.

Could you say a bit more about hyperpigmentation and scarring for example and your experiences of that?

Yeah, I think it is more likely to happen in like darker skin tones but I-, you can get both, so I sometimes get light patches and I sometimes get dark patches. Don't really know why, some go one way and some go the other. And the problem is most of the time the doctors say, “You've got to ride it out, that's gonna take, you know, it could take months, it could take years. You know, if you keep like exfoliating and tanning eventually it evens out,” but, you know, there are some areas I've had for like three or four years that haven't completely evened out. And there's some that took a couple of months and now I can't see them at all, so. It's just all, there's no, there's no kind of rule to it. But that was something that I wasn't forewarned about by any dermatologist or doctor and then just discovered afterwards that that, that ‘oh this has happened’. And then they sort of said, “Oh yeah, that's pigmentation.” 

So yeah, I sort of just had to deal with it as it was there. And I mean it's not so bad with the summer because I tend to go out in the sun and sort of feel like things are evening out. 

Hannah talks about her history of skin conditions, including changing from plaque to guttate psoriasis.

I had eczema as a child, so I've obviously kind of always had a predisposition to dry skin. My mum has really dry skin, but no actual skin conditions. It's not led to any others. The type of psoriasis I've had has changed, so I had plaque psoriasis originally, so like it would be one big area would be covered, like this part of my elbow [points off camera] often was. And then after cyclosporine, when the kind of severe psoriasis started, I got a lot of guttate, which is basically like small droplets of psoriasis, and that, my legs and arms then were like just very, very small and kind of drops. And that was actually more difficult to treat like with creams because you just sort of have to like do every single little one. And with steroid creams they advise that you don't put it on normal skin, so it made it virtually impossible to just kind of like reach those tiny areas all the way, all over. 

Hannah talks about her experiences with nail psoriasis on her hands.

So at the moment I don't really have it that badly. One of my nails is a bit sort of misshapen. But what happens is they can-, it gets sort of pitted and discoloured. So a lot of the time you're wearing nail polish to cover it up which can't exactly be good for the nail psoriasis, to kind of cover it in paint. It's, it's quite an embarra-, like I, I'd say nail psoriasis like did affect me quite badly because I guess like with women this idea of having nice nails is something that you really want and you seem, with your hands, to be really conscious of people looking at them. There were times when my nails were really bad, so that, you know, I could, they were basically just com-, breaking apart all the time. If it gets really bad, sometimes they recommend just pulling them out of your-, the nail bed completely so you basically don't have any nails. So I was always so fearful-, like scared that it was gonna get to the stage where they would just take all my nails. And it is hard, it's, it's strange, but nails are just one of those things where you just think ‘this-, people will see it and it will look awful and it, and it will disgust people’, but yeah, so that was quite hard. And it was just mostly my hands, I didn't have any problems with my feet actually.

Hannah looked into alternative deodorants when she had psoriasis on her armpits.

Deodorant affected me really badly, so I had psoriasis on my underarms so I was, and like all the stuff, that are kind of aluminium based deodorants like just wreaked havoc and made the situation so much worse. I mean if I wore deodorant, a normal deodorant, the next day I would visible see that my psoriasis was about ten times worse under my underarms and red and kind of hurting. So I eventually had to give up all together with normal deodorants and try to use some natural ones which I feel like probably aren't industrials strengths, so don't really work in the same way. But I found coconut oil really, really effective with, like as a deodorant and it's kind of stopped me sweating as much, it stopped like any smell. And it's really, really worked for me. That, sometimes coconut oil mixed with baking powder, which is something that I read online, so these, there are all of these kind of natural things online that people talk about and some things won't work for you and then some things really will and you'll, you'll wonder how you survived without them. So now like I use coconut oil all the time on my underarms and it's really helped. And then like I'll use sometimes natural deodorants as well that I’ve found like there's salt based one's that use like salt to-, kind of like a rock of salt and you rub that and you have to like kind of wet your underarms first. There are other ones that have like tea tree in them and other things to kind of like sooth, but also like to completely give it a better smell. But obviously nothing that's like antiperspirant because the idea of an antiperspirant in itself is like not a good thing to kind of stop yourself from perspiring that can of, that-, anything that has that in it can affect your skin badly I think if it's sensitive or if you have psoriasis.

Hannah talks about the difficulties of working out triggers.

It’s difficult to know what triggers it. I know sometimes people say diet and things can trigger it. I've occasionally tried like over the years tried different ways to kind of like suppress it, so I've tried sort of a gluten-free approach and diary-free and those kind of things and thought that maybe that would help. Didn't really make a difference. For me, the only thing that helps is medication, but it's hard to know what the trigger is. It's like a vicious cycle, when it's bad you're more stressed and it just continues to be bad. When medication makes it better I feel less stressed, so I feel like my stress and any kind of depression I've had because of my skin has been completely linked to the skin all the time, so whenever the skin's better, I feel better, and whenever the skin's bad, I feel bad. So it's really hard to determine what's a trigger, or what's you know like a, like a factor or what's a result of the skin, I just, it's hard to know.

Hannah says psoriatic arthritis is an extra worry that most of her peers don’t have to think about.

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. 

Hannah thinks there are particular mental health issues related to having a skin condition like psoriasis.

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. 

Hannah can’t have live vaccines whilst on biological injections, impacting on where she can travel in the world.

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. 

Hannah researched treatment options and asked her dermatologist to prescribe biological injections.

And if you've, sometimes it’s good to just go with your gut feeling – if it doesn't work or you have side-effects, then you move onto another thing. But this has really worked for me and I'm really pleased that I decided to go on this particular one. And I went on it because the forums-, like they seem to have the most positive feedback on the forums. And I just kind, you to learn to trust that when you see so many people giving similar feedback and you tend to trust people with the condition more sometimes than your own dermatologist cos you just feel like they know what it feels like to go through so many things and have it not work. And they are just following the protocol of, “We'll try this first, then this, then this, then this.” So that's why I kind of sort of trusted them over my dermatologist and went with this. And they were happy to prescribe this. It would have been somewhere along the line, I would've, had it had the thing they wanted me to go on not worked. So they were fine with it, but I think it was unusual to kind of decide yourselves this is what you want.

So it was a treatment the dermatologist would've got to at some point?

Yeah it was definitely an option, it wasn't like something that they didn't have in the hospital and nobody else was on it or anything. They just tend to always starts with some-, a certain one and then go onto another. And I think because the injections, the injections are quite expensive I imagine the protocol is that you start with the least expensive and then only get to the most expensive if you need to. But that's obviously the wonderful thing about the NHS, is that you-, we don’t really have to worry about that situation. I just thought ‘this is what I really want, so I'm gonna push for it’ and, you know, like they agreed in the end, so that's fine. 

Hannah completes questionnaires about emotional impacts of psoriasis at her dermatologist visits, but the results aren’t usually talked about.

You mentioned about the surveys that you fill in, the questionnaires which they make into a score. Do your doctors then talk to you about that in the consultation?

Yeah so today I went to the hospital, so it's quite good timing cos it's sort of fresh in my mind. And yeah, so after they do the PASI score of how it-, often basically your psoriasis like severity index which is that, that kind of thing about how much of your body is covered, kind of tends to correlate with this survey they do on how it's effecting your life. So I had a score of like one today because it's hardly affecting my relation with people, what I wear and those things at the moment. You know, at its worst it could be up to like 20 or something. And they talk about it and they're like, “Oh it's good,” but I mean they only talk about it as much as, “Oh OK that's, it's bad,” or, “Oh, that's good.” I, they, they don't, I recall people being like, you know, “What should we do about that, because the score is very high?” It's more that just sort of for their records I feel-

OK

-they don't seem to massively be acting upon it.

OK. So it doesn't tend to open up a conversation with you about sort of elaborating on why you scored that score?

No, that hasn't really happened so much, I mean apart from the one time that I did go to counselling, but that's because I asked about going so before they had the chance to say, “Your score’s really bad,” you know, and talk about it I said, you know, “I'm feeling awful as my survey probably suggests and I'd like to see someone.” But, you know, if I hadn't said that they may well have, have spoken about counselling, but I don't really know. I definitely think that it should be like a two-pronged approach for young people with a skin conditions like psoriasis. They should be saying, you know, “Do you want to speak to someone?” And even if they don't want to do formal counselling, just to have the doctor ask a few questions – “How are you feeling? How's that made you feel?” and, you know, just getting them talking because it's something where it can feel really like, I don't know, insular – like you just don't want to talk to anyone. And you keep it all inside a lot of the time. 

Hannah was able to choose which dermatology department she could be referred to. She researched this and chose one at a medical teaching hospital.

The GP just referred me, but I picked where I wanted to be referred to. So I basically said, “I don't want to be referred anywhere, like to a local hospital, I want to be referred to a bigger kind of teaching hospital where there would be a psoriasis team.”

That's really good that you had that.

Yeah, yeah. And I think my mum sort of had to push me to do that because like it is better to go somewhere where there is a team. And also, it’s interesting to go somewhere where there is research, medical research being done. So like I’m involved in research at the moment which is looking more into like different kind of treatments. So whenever I go to the hospital for my normal regular check-ups, I also have extra tests done which help them. And it's good because I guess you just feel like you are part of the process of trying to like help discover something that really works. 

I'm in a teaching hospital where they've got a big psoriasis department where they’re constantly like teaching new people. So I tend to often have like five or six people see me at once. All keep coming in to the room and like, like will check over me like multiple times, so I'm quite used to that. But I have found it like, you know, really positive, that the hospital that I'm at is like has a, you know, really, like a lot of psoriasis research going on and people really interested in like my experience with different medications. And yeah I've found it, I've like found it a really positive experience with the nurses and doctors.

Hannah helped educate her dermatologist about online psoriasis forums.

I talk a lot about the forum with my dermatologist who was quite interested to know because he'd never read about them and he said like, “I've had a few patients who said they they've looked at stuff online,” but doctors always tend to view looking at things online like it's a negative thing. Even though I felt like it really, really helped me. And I just think it's important to be informed. Like it isn't, it's not that the dermatologist is ever wrong, but it's just that there is more than one option, especially with skin conditions where there is so many different medications.

My one dermatologist is the only person I've actually mentioned the forums to but it was sort of a team in the room, and they were all kind of quite interested, they were like, “Oh yeah you know we've never really seen them before, but we've heard about them, patients have spoken about them.” And they were just kind of baffled as to why I'd really decided on Stelara and not any others first. And I just sort of explained, you know, people've had good experiences. I know the issue with it is that there is no long-term research cos it hasn't been around that long but it's really similar to other biologics. 

Hannah finds a soap substitute helps her skin.

The soap substitute I have is like a moisturising cream that I got from the doctor, now I also get Aveeno on prescription. Which you can buy over the counter, but I sometimes get it over the counter, sometimes get it by prescription, it depends on how big the bottle is and how much you’d have to pay. But I used that a lot in the shower and the bath and I find that it's really nice and like it seems to work quite well for dry skin. But of course cos I'm on medication I don't know how effective-, if my psoriasis was at its worst I don't know that Aveeno would really be doing anything at all. But even with my skin completely fine, I always use dry skin products, cos I feel like I, you know, I always will have dry skin.

Hannah’s found there are downsides to using medicated shampoos.

The T-Gel I did try at the beginning and like they are, they're all like kind of tar based and like kind of smelly and like don't really make your hair smell nice at all. And I found that the scalp is really stubborn and none of those things have really effectively worked. The only thing I've found is that like maybe if you leave something on overnight, it will take of a lot of the plaque the next day. And then you, when you've got thick hair it's difficult as well to just kind of get it all out and get your scalp looking like reasonable again. 

And things just multiplying so quickly that you're just finding yourself doing, you know, I found myself doing like two hour routines, or three hour routines like every time I want to wash my hair and that is just so time consuming that you just basically don't really wanna go out. Like it's fine if you’re gonna stay at home, but yeah, it was just a long process to like do anything.

Hannah will stop systemic psoriasis treatment when she’s planning to have children.

I'm pretty sure all the medication I've been on – from methotrexate, cyclosporine and now the biologics, you can't get pregnant on them. So when you get to the stage where you’re thinking about having children you have to come off the drug and there's certain amount of time for each one that you have to be off it and I think for Stelara they said about a year or half a year or something so, you know, when it gets to that stage of my life I'll have to think quite far ahead about coming off it and giving myself enough time to get it out of my system. And I think even then I'll, I will sort of still worry to an extent that, you know, has it affected my body in some kind of way. 

Hannah still needs blood tests but has now she’s on Stelara (ustekinumab injections) than when she took methotrexate.

The only problem is also, I, it's hard, blood tests – it's hard to get blood out often with me. So I find that like some of the more experienced nurses can do it, whereas other times I do often feel like a pin cushion cos like they're having to do it so many times. With Stelara, it's not so bad because I don't have blood tests that regularly only three, every three months. But with methotrexate I had to have a blood test every week. So before the medication I'd have to have a blood test. So that was a lot harder.

And did you have to go to your GP or up to a dermatologist?

I used to go to a GP just because it was easiest. And then they would send it over. 

Hannah says she had a number of side effects while taking cyclosporine, including disrupted mood which impacted on her relationships with friends and family.

So all of the side-, all of the major side-effects are basically about your immune system being low and you being more likely to get like serious illnesses. But the ones that I experienced were just, I had bad headaches and I felt nauseous and certain like food would make me sick. So like diet coke would make me feel really ill and things like that. Which was strange, like that wasn't written down anywhere that I could read. I just noticed it, that when I wasn't on it I could drink it and I felt fine and when I was on it I, like yeah I felt weird. And it would just make my stomach like in pain, I'd get cramps all the time. So yeah, I-, and also it affected my mood like a lot. And that was something that I wasn't that aware of, but my friends and family would tell me a lot. So I became more irritable and I also became a lot more depressed and angry and, you know, sort of emotional and crying all the time about things. And also aggressive, you know I pushed people away a lot of the time and even when the cyclosporine was helping my skin, I could feel like it was still really affecting my mood. Cos usually when my skin's better I feel like a lot calmer, [laughs] I’m a lot nicer to people when my skin's better. But with cyclosporine, I struggled with my personality. I don't know, it felt strange, it felt like I couldn't really recognise myself. I'd look back on it now and think you know I just, ‘that was a completely different person.’ Most of the time angry, just angry all the time. And I felt like I wanted sort of-, it was weird I wanted to talk about it all the time because it was like, it consumed my life and I wasn't really going out. But at the same time when I did go out I didn't want anyone to know. So when I was at home with my friends, you know, it was kind of all I'd talk about, to the point where like my mom and dad would often say to me, you know, like “There is nothing we can do, like you’re on this medication and we can't talk about it 24/7. You know, you have to just like try and cope, and try and see the bigger picture.” And I think everything would anger me, like every time somebody told me to, “See the bigger picture. You’re on medication. You are gonna be fine. You're not dying of anything.” Everything would just kind of anger me and I'd just sort of lash out. And I feel a lot calmer on this medication, it seems strange to think that medication could affect your personality so much, but it did. And I instantly sort of saw the difference when I came off it and I went on other things, even though my skin was still bad I felt different.

Hannah thinks there’s usually an order to the biological injections prescribed, but her doctors agreed to her choosing a particular one (ustekinumab).

And they were happy to prescribe this. It would have been somewhere along the line, I would've, had it had the thing they wanted me to go on not worked. So they were fine with it, but I think it was unusual to kind of decide yourselves this is what you want.

So it was a treatment the dermatologist would've got to at some point?

Yeah it was definitely an option, it wasn't like something that they didn't have in the hospital and nobody else was on it or anything. They just tend to always starts with some-, a certain one and then go onto another. And I think because the injections, the injections are quite expensive I imagine the protocol is that you start with the least expensive and then only get to the most expensive if you need to. But that's obviously the wonderful thing about the NHS, is that you-, we don’t really have to worry about that situation. I just thought ‘this is what I really want, so I'm gonna push for it’ and, you know, like they agreed in the end, so that's fine.

Hannah’s psoriasis flared up when she stopped taking cyclosporine. She was then eligible for a biological medicine injection.

And then I just sort of discussed biologics and you have to have a certain percentage of your body covered before you’re even, you even qualified for a biologic. So it just happened to be that because when I came off cyclosporine, it came back so violently and was at 70, 80 percent stage that I could actually finally try a biologic. So I probably never would have been able to-, had that not happened because I was at a moderate stage. I wasn't at a severe a psoriasis stage. So when I did, when it did become as severe that's when I talked about going on Stelara. And they would have put me on Humira first, I think they always put you on Humira, then they put you on Enbrel, and then I think Stelara is considered after that. But there isn't really a rule because it seemed like, when I said that was fine, they were fine, they weren't-, they didn't say, “Oh no, you have to do Humira first,” they just said that, “That's what we usually do.” And it just sort of makes you realise that you don't have to do that, if you don't want to. Part of the reason that I chose Stelara, which like seems like a kind of superficial reason, is because the injection doesn't hurt as much as people on the forum had said that other biologics had hurt. So they said Humira hurts quite a lot. Also I think three months was the biggest gap, so I think other ones it was every like month or every couple weeks. So it was the biggest gap and the least painful, so I thought ‘well if that works, that will be great’. So I thought, ‘we'll go on that first and if it doesn't then I can deal with the nastier ones’.

Hannah learnt a lot about psoriasis treatments on a support forum. This is where she first heard about biological medicine injections.

But I learnt about medications that I didn't really know about. And also things that people were discussing like sort of in 2008 and '09 that like now are available in the UK, so it’s like I've seen like the progress of them. And there’s been people on the forums who were in the clinical trials who now, you know, are like, now it’s available to everyone, kind of like got to see the journey of lots of different medications. In fact the one I’m on now I remember people doing, like the first kind of people on it were discussing it on there and how it had worked for them. Cos the medication I'm on now is quite a new one, it hasn't been around-, I think it has definitely has been around more than a decade. So yeah, I learnt a lot and that's why I decided kind of what medication I wanted to go on. I’d tried loads, I’d tried about three of four before I'd got to this stage, none of them had worked and the one's that had worked I'd have bad side-effects. So I kind of chose myself that this is the one I want to go on and I went to my dermatologist and said like, “This is the biologic that I am interested in going on.” If they, “It seems to have really positive feedback.” I talk a lot about the forum with my dermatologist who was quite interested to know because he'd never read about them and he said like, “I've had a few patients who said they they've looked at stuff online,” but doctors always tend to view looking at things online like it's a negative thing. Even though I felt like it really, really helped me. And I just think it's important to be informed. Like it isn't, it's not that the dermatologist is ever wrong, but it's just that there is more than one option, especially with skin conditions where there is so many different medications. And if you've, sometimes it’s good to just go with your gut feeling – if it doesn't work or you have side-effects, then you move onto another thing.  

Hannah finds biological injections are working well for her, but thinks diet and healthy living is important too.

So I'm pleased to be on medication, but of course I'd rather be on something natural that was working. And I know that something that I should've tried for a longer time was the diet approach. Because there's a lot of stuff about, you know, the stuff that you eat basically triggering psoriasis. So like fatty stuff and dairy and processed foods. I found that really hard to try and like change my whole diet, but it's definitely something that I want to pursue again. This like idea of testing what might be making it worse. 

It's difficult to do that when you’re actually on medication because, you know, you feel like if that's already helping it, it's hard to see what foods like, what foods are helping and what foods are making it worse. You'd have to sort of be on nothing to, to really test it. But I think it's always worth like trying to exercise more and trying to eat well with psoriasis. I definitely think that when my psoriasis was at its worst and I didn't want to do anything and I was less active and, you know, like was eating kind of like comfort eating – it was like probably at its worse. And it is just a vicious cycle like that. You want to get out and exercise and eat well; when your skin's better weirdly, you know, like you feel more in control of your life when your skin's better. So it all seems to come together like a good lifestyle and good skin, and like a bad lifestyle and your skin's bad. But I'll be interested to see whether there are some foods that are making it bad.

Hannah talks about how the emotional impacts of psoriasis affected her friendships and social life, including dropping out of plans.

In terms of activities it's like, like the gym and things like that, like it's kind of the same as like social-, socialising would be, so like I just wouldn't want to-, when it was bad I just wouldn't want to go out. So that would include like doing any kind of activities. I'd like, like if I was gonna exercise, even though I hardly do, it would be like by myself. I'd rather kind of be by myself. And I could see, I could feel myself wanting to cancel things all the time. So I'd kind of like work myself up and be like, ‘ok I'm gonna go to this’ and be really confident about it on the day before and then on the day just be like ‘I'm not going. Anyway my skin's not, I'd, my skin looks awful, I'm not going. I don't have the energy to spend three hours trying to make it look fine, to put make-up on everything, to find something to wear’. Like you know, I would just back out all the time. And I could feel people kind of be disappointed and because I didn't want to tell them what was happening, you know, I just sort of just looked like I was kind of like flaking on everything. So yeah, it did, it did affect me badly. It's been better since I've kind of been honest about it. And I weirdly felt like I could only be honest about it when it was kind of better, so that it looked like it was sort of in the past. Like I sort of, I didn't wanna show people it at it's worse and sort of have that look of like shock and disgust. So when it got a bit better, then I would talk about it and be like, “Oh I'm on medication because my psoriasis used to be really bad” and, you know, I felt more confident talking about it when it was behind me. It's really hard when it's at it's worse to just be open about it and just be like, “This is what I have.” Because like you, you just hate it so much, you can't imagine that anyone else would feel any differently to the way you do. And it's hard to see it from an outside perspective. And I think, you know, everyone in my life has been like absolutely like great with it, and like interested in like talking about it, and the medications. And then you tend to find out lots of people have other problems and skin conditions and things that they're dealing with that you just sort of didn't realise. And I have been really grateful that it hasn't been on my face, cos I look at a lot of my friends who like suffer from acne and I do feel like, you know, at least I could like hide it. It's so much so much more difficult to hide you know the area that everybody sees first. And you like can try so hard to hide that, but it's much more difficult.

Hannah didn’t tell her friends about having psoriasis for several years. She tried to keep her psoriasis hidden while at university, which meant it took her longer to get ready before going out.

Like it took me a long time to admit to my friends that I had psoriasis. Like if I got it at16 I probably didn't tell people till like 21. And I, when I graduated from university like I was probably more confident and started to care less and less about kind of like what people thought and the sort of social side of it. And I was kind of over the stage of my life where I was going out all the time and like, you know, I kind of moved back home and then did start to tell people. But yeah, so for so long I wanted to kind of like keep it this secret, so that when I was out, it didn't sort of exist and it wasn't part of my life. And I got quite good at hiding it, so when I did tell people, like most people didn't know that that was even happening, so.

How did you feel about that sort of hiding it and not being able to speak to anybody about it?

Yeah it was, it was difficult and it was frustrating like I said earlier about having to spend so much longer getting ready. Those kind of things frustrated me because you want, you, there was no like spontaneity. You couldn't just decide ‘I'm gonna go out and I'm gonna see this person’. You had to really think about it, you had to really think about what you were gonna wear. Because I was still in that stage where I didn't want anyone to know that I had it, so I had to work really hard to make it look like I didn't have it. So you're kind of in that cycle where-, if I'd been honest maybe I wouldn't have had to spend so long getting ready because it, you know, if you could see a bit it wouldn't matter. But it, it's just one of those things of a skin condition where you just, you find it unattractive and you're always going to find it unattractive. You're never gonna wake up one day and think ‘psoriasis actually looks really great’. Like you're always gonna find it unattractive and want to kind of, like suppress it as much as possible so that people don't notice.

Hannah encourages GPs to refer to dermatologists (if they are unsure about treating psoriasis) and counselling (if the person with psoriasis is struggling).

To talk about counselling as an option and to make people realise, make their patients realise that it's completely normal to feel like depressed. And ask them how they are and how their skin makes them feel. I think that's being done a lot more in hospital. So I, every time I go in now I get a survey on how, similar questions to what you've asked, “How has it effected work and study and life in general?” And then that is made into a score and they look at that score every time I come in and see if it's improved. So that is happening a lot more. And I'd just advise them to, I don't-, I mean I would just also say don't have this sort of attitude that you know best because it's not a bad thing for a patient to have done their own research. And with something like psoriasis there is a chance that people will have, you know, really read up and looked online at stuff. And that's not necessarily a negative thing. I have found it, like previous experiences, not so much with dermatologists, but definitely with GPs where I've had to be like, “Look you know what I've done loads of research on this and it isn't your, it, you, you don't specialise in psoriasis, I really want to see someone who does. I don't want to like keep coming to see you.” And sometimes you have to be firm and say like, you know, “I deserve to see someone who, who specialises in this condition”, instead of like going to see the GP again and again and again.