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Psoriasis (young people)

Getting a diagnosis and psoriasis changing over time

The experience of being told they had psoriasis (being diagnosed) was talked about by lots of the young people we interviewed. This section is about what age they were when diagnosed, the process of being given a diagnosis and how they felt about the news.

Age at diagnosis

Some people were diagnosed with having psoriasis when they were toddlers and young children. Their parents usually first noticed symptoms, as for Damini whose mum saw some patches behind her ears at age 4. It could be hard growing up with psoriasis from a young age. Some found that their peers were mean and they had been teased or bullied.
 

Zara was diagnosed with psoriasis on her feet when she was two years old. She didn’t understand much about the condition at first but felt it made her “different”.

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Age at interview: 16
Sex: Female
Age at diagnosis: 2
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I didn’t know what it was, it was I didn’t really understand what psoriasis was it was just something that I had that other people didn’t. I didn’t mind it to be honest I just, it felt kind of cool when you, when I went into primary school cos I stood out and eventually it got worse just cos I used to get bullied for it but yeh I just, the bullying didn’t bother me to be honest and the school sorted it out.

What do you mean about the initial was sort of a bit cool to stand out, do you remember how you felt about that at the time?

Yeh it was just cos I was different, I mean there were so many young children around here everyone, everybody was the same and cos a lot of like my friends had, we’d all been born at the same time.

Yeh.

And they were all, whenever they got together they were all talking about their children but mum always came back and said how many times I came up in conversation just because of my feet and how I was different, how I stood out but I quite liked being seen as special and a bit different to be honest.

So it’s good different.

Yeh.
 

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

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Age at interview: 16
Sex: Female
Age at diagnosis: 7
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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.
Others were older when they were diagnosed. Steven was 17 when his doctor told him he had psoriasis: it was like a “bang, it’s all changed”. Hannah was diagnosed at 16 and found it hard as she didn’t know anyone else her age with psoriasis to talk to. She says “it makes you at a young age have to think about your health, like a lot” compared to most of her peers.
 

Lucy thinks the age at diagnosis is important, with social and emotional impacts.

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Age at interview: 24
Sex: Female
Age at diagnosis: 11
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I think I was diagnosed at a really sort of key time, because I was just about to go to secondary school. And I was very aware of my appearance and how I looked and things. And, I did find it very difficult. I found it more difficult then than I would now if I was just diagnosed now, I think. And I think, because, as a child or as a teenager, especially, y’know, I was going through school and I was working really hard on my studies, but then, y’know, I was interested in boys and I had lovely friends as well, but all of these things coming together and I thought well, and it was, it’s so difficult. You don’t really, you don’t know who you are or what you want yet, I didn’t anyway. I had no idea. And but now, at, at 24, I’m secure in a relationship and happy, you know, career wise and I think when you are happy like that and secure, you tend, well, in my, in my experience, I now feel better about my condition and feel that I can handle my condition better and keep it under control better.
Getting the ‘right’ diagnosis

Often people had some psoriasis symptoms for a while before going to the doctor. Russell says he had “touches” of psoriasis before his first major flare-up, which he always thought of as just patches of ‘dry skin’ or ‘sweat rash’ from playing hockey. Simon only became worried when a ‘scab’ on his scalp didn’t go away and became bigger. Louis made a GP appointment “when I woke up and the rash had spread to my face”. People sometimes looked online to see if they could work out their symptoms.
 

Russell was on holiday when he had his first major flare-up of psoriasis. He looked up his symptoms and worried about what it could be.

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Age at interview: 20
Sex: Male
Age at diagnosis: 19
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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.
 

Louis preferred going to the doctors than looking online for a diagnosis.

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Age at interview: 21
Sex: Male
Age at diagnosis: 18
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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.
 

Before Jack was diagnosed with psoriasis, he found it reassuring to see photos online that looked like his symptoms.

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Age at interview: 24
Sex: Male
Age at diagnosis: 20
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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.
For some, a diagnosis of psoriasis was made quickly by a GP or dermatologist. Jack says he was “quite lucky” in that he was already registered with a local GP whilst at university. He went into his appointment fairly sure he had psoriasis and his doctor agreed. Russell’s GP almost instantly diagnosed it as psoriasis when he had a flare-up. Steven asked his mum to look at his scalp after a friend commented he had “really bad dandruff”. As psoriasis runs in Steven’s family (see causes), he saw a doctor and it was soon diagnosed.

Some psoriasis symptoms are shared by other conditions and a lot of the young people had been misdiagnosed initially by their doctors. This could be time-consuming, upsetting and frustrating. Louie and Carys found their skins became worse during the wait for a psoriasis diagnosis and treatment. It could also be expensive having to pay for prescriptions to get treatments for diagnoses, like eczema or ringworm (a fungal infection), that turned out to be wrong. Megan’s and Lisa’s GPs both thought they had chickenpox at first.
 
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Lola’s GP wasn’t sure at first whether her symptoms were psoriasis or a fungal infection.

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Age at interview: 17
Sex: Female
Age at diagnosis: 14
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Can you remember what your first appointment about going to see the GP with psoriasis was like?

I remember going to see a lady and-, I can’t remember, I think, I can’t remember, I think the spots might have been on my legs, or they might have been on my arms, I can’t remember. But she was looking at one spot and she couldn’t decide whether it was a fungal infection or a steroid-, not steroid, or psoriasis. But they gave me steroids and in a fungal cream, so basically they put-, to eliminate what it was they gave me this cream and the effect of that cream was to say whether I have psoriasis or a fungal infection. So it took a while before they said I’ve got psoriasis, and then from then on they kind of I guess gave me weak steroids and gave me lots of shower gels and moisturisers and stuff.
Megan thinks she wasn’t diagnosed with psoriasis at age seven for a while because “it’s really rare for children under the age of 12 to get it”. It wasn’t until Megan went for tests and the doctors could see that she had “skin growing on top” of patches that it was diagnosed as psoriasis. Zara’s parents took her to the doctors a few times before she was referred to a dermatologist and diagnosed with having psoriasis. Sometimes tests were run to help the doctor with diagnosis.
 
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It was difficult for Louie to keep going back to the doctors in search of a diagnosis as his mum works full-time.

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Age at interview: 16
Sex: Male
Age at diagnosis: 13
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I realised it on my scalp, on my head and the doctor said it was some sort of fungal disease which is obviously- we know now it’s not. And they gave me some creams for that and, yeah, I did go to the doctors and they just said it was that and it turned away as something else.

How long did it take for somebody to correctly diagnose it as psoriasis?

Had it for about-, I had psoriasis before someone correctly diagnosed me for about six and a half months, but I had difficulty going to the doctors cos I was young and my mother is a full time-, she works full time so it’s difficult to get doctor hours that correlate with my mums working hours. 

So it was very difficult to go to the doctors unless it really got serious and that’s-, by the time it gets too serious it gets pr-, it gets to the point where it’s not easily as treatable because of the severity of it and so it was about six or seven months.

Did the doctors give you anything during that time for what they thought was the fungal infection?

They gave me a fungal shampoo of which didn’t seem to work because obviously it was doing the wrong thing it wasn’t close to be treating me and then they gave me just like a little steroid cream for my face but that didn’t work either. 

And that didn’t work either so obviously I went back at a later date.
 

Lucy’s dermatologist confirmed she had psoriasis with a biopsy (when a small bit of skin is removed to examine under microscope).

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Age at interview: 24
Sex: Female
Age at diagnosis: 11
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And I was brushing my hair and I had bits in my hair and I thought, ‘this is weird’. So then we went to the doctors and he looked and he said, “Oh yeah, I think it, it must be a bit of dermatitis” he said, first. So I got some cream for dermatitis, nothing happened. And it was really itchy. And I went back and he said, “Ah”, you know, “It must be nits,” and gave me nit treatment. Didn’t work. Went back again, so this was over the course of probably six weeks. And he said, “Ah,” you know, “Well, we’re gonna have to refer you to a dermatologist.” Which is then, I went to the dermatologist [clears throat]. He then said it was seborrheic dermatitis to start with. Sent me away with treatment. Then we came back, nothing had changed. And so he took a biopsy the second time we went back to the dermatologist and I was only about ten or 11. I can just remember seeing my poor Mam’s face. So it was, like lying, I can remember clearly, I was lying on the table and I had a biopsy from under there [points to underarm]. And she looked like grey and I can remember the nurses saying, “Get the mother a toffee,” you know, “She’s gonna collapse.” [Laughs] But I was numb so I couldn’t feel it. So I felt fine.
 
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Carys saw her GP several times before seeing a dermatologist who quickly diagnosed it. She then had a wait before starting phototherapy treatment.

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Age at interview: 23
Sex: Female
Age at diagnosis: 22
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I was covered in psoriasis and all I wanted was some relief from it. And I, and I had to wait and although that makes me sound really impatient, I think I was like I’d waited so long to get a diagnosis or it felt like so long to get a diagnosis and then it took 30 seconds to diagnose, but then being told you have to wait another six weeks for treatment was quite like frustrating in a way. Cos by the time my treatment came some of the plaques had started to go. I mean, I was still covered, but there was the ones that were starting to fade, but obviously if I hadn’t not had the phototherapy I think it would have took probably the same length of time to get rid of it. I think I would have been covered for probably three more months or something. 
Responses to diagnosis

A diagnosis of psoriasis was devastating for some people. They were shocked to hear they might always have the skin condition. Louie was “distraught” and described the news as “like a dagger in the heart”. Megan “didn’t really understand what it was and why I had it”. She used to ask questions and thinks it was hard on her mum to see her upset. Some people hadn’t realised at first that psoriasis is usually a chronic (lasting) condition and learning this came as a surprise, which many found upsetting news.
 

Simon learnt from his mum that psoriasis is often a long-term condition.

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Age at interview: 22
Sex: Male
Age at diagnosis: 17
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So had doctors sort of explained that it was something that tends to stay with people for life or …?

Well, it wasn’t the doctors that actually mentioned that, it was actually my mother because she used to work in a medical centre herself in the 90s, so she did have a bit of experience when it came to medical conditions and she was quite familiar with psoriasis. While she never had it she knew patients who did, so if anything she was the one who told about, yes psoriasis was chronic. It isn’t short term.

And if anything she did suggest it when I first had it that, yes, it was psoriasis.
 

Louis had a one-off period of ‘post-viral psoriasis’ but his doctors didn’t know at the time how long it would last.

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Age at interview: 21
Sex: Male
Age at diagnosis: 18
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Yeah, so it was- [sigh] my dermatologist effectively told me that he didn't know when it would go away. So he said, "I’ve given you all of these things to do, you're doing all the right things; however the nature of psoriasis is that I just don't know when it'll go away. So, all you can do is just keep doing what you're doing, and hope for the best." Which isn't the best sort of prognosis that you can be given. He said, "It may last-, it may last days, it may last weeks, it may last months, it may not go away. Hopefully it'll calm down, but you might have-, you might have this for pretty much indefinitely." Which was quite a scary thing to hear because at the time it was really bad. And if it had calmed down and stayed, that would have been okay, but if it had stayed as bad as it was and not really gone away, that would’ve-, that was quite scary, yeah. I didn't-, I didn't particularly want that to happen. So I think in hindsight I was relatively lucky, because I was given a sort of ‘hopefully it'll go down in the next few months’ prognosis. And it went away probably within a few weeks. Other than odd bits on my arms and my knees, everything was sort of calmed down relatively quickly. I say relatively, it was about a month, yeah. A month, six weeks.
A few people said they were relieved to have a name for their symptoms which they could tell others and get treatment for. The uncertainty of not knowing, and the fear that it might be another life-threatening illness, meant they were reassured by the diagnosis. Russell thought the word ‘diagnosis’ was too “strong” for his experience of psoriasis though, because it “implies being a serious horrible illness” whereas he described only “touches” of psoriasis on some body parts. Adam wasn’t worried when he was first diagnosed during primary school, but found it became more of a concern when it flared-up at secondary school.
 

The redness on Louis’ face drew unwanted attention from others. It became easier for him to explain once he had a diagnosis of psoriasis.

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Age at interview: 21
Sex: Male
Age at diagnosis: 18
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Obviously psoriasis isn't particularly a good-looking thing to have on your skin. Very like red, angry, blotchy. And when it started on my arms and on my chest, that wasn't so bad because people don't see it day to day, but when it started coming up my neck and onto my face, then people would say, "Oh Louis, what's that on your face? What-, like what's going on?" And at the start that was a bit [sigh], that was a bit irritating, but I think you get used to that quite quickly. I think, especially once I knew it was psoriasis, I could say, "Oh, got this, don't know how long it'll be there for, hopefully it'll go away, that’s effectively it." But before it was sort of confirmed I had psoriasis, I had to sort of say, "Well I've got a rash, don't really know what it is, don't know what's going to happen to it." So that was-, that was a bit more difficult saying, "I don't know what it is, it's just something that's there." 
Information given with the diagnosis

Several people talked about the information given with the diagnosis of psoriasis. Most hadn’t known much about psoriasis before. For those diagnosed when young, parents were usually given information which wasn’t always passed on to the child as they grew up. Ella remembers asking her parents about psoriasis when she was in secondary school and they explained it was to do with her immune system (see causes). 

Some people remembered being told certain things about psoriasis when they were diagnosed. Adam’s doctor told him it was probably stress related (see triggers). There were also some things that people weren’t told which they felt they should have been. Lola was “disappointed” that her doctor hadn’t told her more about psoriasis and worries about “what have I got left to find out”.
 

Lola thinks she should have been told by her doctors about the chances of developing other conditions, like psoriatic arthritis.

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Age at interview: 17
Sex: Female
Age at diagnosis: 14
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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.
Psoriasis changing over time

Most people’s psoriasis fluctuated (got better or worse over time). An exception was Louis who had an “isolated incident” of ‘post-viral psoriasis’ which cleared up with topical steroid treatments and hasn’t returned since. Some people were very young when diagnosed—like Damini, Ella and Sofia—and felt they had always had it, although there were usually periods of time when their skin was better.

Most people had times when they didn’t have any patches (such as when their treatments worked well or their skin had ‘calmed’ down), so they didn’t think much about psoriasis and some didn’t need to use any special medicines/products. This changed if they had a ‘flare-up’ which could be upsetting and frustrating. Hannah says she struggled to get used to the fact her psoriasis “kept recurring” as she had expected a quick solution in the early days with the condition. Psoriasis returning or becoming worse after a gap of months or even years meant going back to the doctors for more treatments (e.g. steroid creams).
 
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Phototherapy helped clear up most of Steven’s psoriasis for a few months.Phototherapy helped clear up most of Steven’s psoriasis for a few months.

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Age at interview: 22
Sex: Male
Age at diagnosis: 14
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I had six or seven maybe more months where I had, it might even be as long as a year, but you, I kind of forgot. And, I don’t want to say I went back to normal life, because I feel like it was normal anyway and I just get on with whatever. But I kind of almost forgot that there was, I mean I still had my scalp so it was kind of like keeping me like wasn’t completely like gone. So there was that. But it was kind of weird, like my leg would, the funny thing with, like my leg would like itch. I tried for as long as possible not to scratch it, I was like, ‘come on, Steven, be good’. And then I’d think, oh hang on a minute, there’s nothing there to like, there’s no problem, you can scratch that leg. Don’t worry about it. So then it was like [gestures frantic scratching].

[Laughs]

And it was quite nice and you kind of forget about it, completely. And, you kind of get to that unconscious like it’s in the back of your mind somewhere but it’s not really there. And then, I think it was my arm started again, just a little patch. I was a bit like [sigh] here we go again. But then I thought like, you know what’s coming. You know what you’re dealing with. Would try and keep it under control. And I think actually trying has kept it as small as it is now.
 
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Louie says the ideal is when psoriasis is managed well and he’s hopeful it won’t always be a big part of his life.

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Age at interview: 16
Sex: Male
Age at diagnosis: 13
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If you’ve just been diagnosed with psoriasis – just, just keep your head up high and just don’t, don’t feel sorry for yourself, although I’ve had people say that to me and it makes me upset. Just don’t feel sorry for yourself. Look, just think there will be a time when you will get better or you-, it will work for you and, or things will just work out the way you want it to work out. Maybe- you might never ever get rid of psoriasis but your psoriasis might get to a point where it’s not as obvious or it’s not-, it doesn’t restrict you in doing normal things and when you do get to that point – it is a relief and you’ve gotta keep chugging along until you get to that point. And find something that is, that you find, well find something that you find enjoyable. 
 

Russell has had two main flare-ups and saw different GPs for each. Although they had different ‘bedside manners’, both diagnosed it as psoriasis.

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Age at interview: 20
Sex: Male
Age at diagnosis: 19
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One of them was, I can’t remember which time round it was but one of them was very, very business-like about it, it was the first time. ‘Cos I went, I went in there thinking I need to explain every detail, everything about the timeline and be very, very precise about it all and the doctor was more or less “Yeh it’s psoriasis” and I’d say a few more details, “No it’s psoriasis.” She was very, very business-like. And I sort of came out think oh that’s quicker, quicker than I expected. yeh I just felt they were quite shut-off about it whereas the next time I went round the doctor, they were both female but they were both so different, the second was much more kind of sat down, listened, engaged like listened to everything I had to say first and then kind of made a diagnosis whereas the first lady kind of cut me off when she knew what it was. so they were two quite different experiences, I’m not saying I came out the first one crying or anything but I did think oh that’s sounded business-like for a doctor.
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