Hearing the diagnosis of arthritis

When people are diagnosed they are told what condition they have and given treatment. People are usually diagnosed with arthritis after various tests (see Arthritis in young people: experiences of tests). It is usually a rheumatologist who diagnoses somebody with arthritis. Other types of doctors, such as GPs, will suspect or suggest that somebody has arthritis before they refer them to a rheumatologist.
The people we spoke to experienced different feelings when they were told they had arthritis.

Relief

People were sometimes relieved because they had been living with the symptoms for a long time. Some said they looked forward to treatment, particularly pain relief. Others said the diagnosis proved that the symptoms were real and not made up. People also talked about feeling relief because they were not diagnosed with cancer.

Charlotte Z’s dad, Robert, was frustrated when doctors failed to diagnose his daughter. He…

Age at interview 49

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Robert’ Wellinitially, I was like, well, you know, lazy teenagers type syndrome but then I was thinking, no, something is a bit up now. Something is a bit wrong. See what I mean. But, you know, if you if you’re going to the doctors every week to try and get a diagnosis and they’re telling you it’s loose ligaments and that, then what do you do? You know there’s something up with your daughter but you sort of begin questioning yourself or you’re then trying to question the doctors. See what I mean. But if you go into a doctor and say, Oh, I’ve just been on the internet. This site here looks really good. It sounds like she’s got the symptoms of arthritis Or lupus or any other thing where your bones ache, doctor’s going to kind of look at you like that isn’t he and say, Well, I’ve just spent ten years at college and you’ve done seven minutes on the internet

So but my feelings on it, frustration really because you think, you was thinking all sorts, whether I remember thinking its cancer or something else more life threatening. But you just want that diagnosis. Once you’ve got it, I was happy with it, you know, and I shook the blokes hand when he gave us the diagnosis. I said, Oh, thanks for that. Cheers. Fantastic Because I knew, you’ve then got a diagnosis, haven’t you. You’re not questioning your own mind then.

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Bradley was relieved to know what was causing the pain and swelling in his joints. Being…

Age at interview 14

Gender Male

Age at diagnosis 12

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Yeah, once I found out sort of what it was and what it, what actually happens inside my body. I don’t know if it is similar, like what actually happens to what would happen in grandma or grandpa or whatever, but I know that it, it probably won’t last with me forever. I’ve got a 60% chance of growing out of it, or the treatment stopping it completely.

So yeah I’m not really worried, and if I have it for the rest of my life, I have it for the rest of my life. So what. It doesn’t affect me. I can just get on with it. Got the title, that’s it.

Were you kind of shocked that you actually had that title of arthritis? When somebody said this is what you’ve got?

Well actually I was quite relieved to know what I actually had and that it could be treated and I wouldn’t feel like that for much longer because then I got, I was on painkillers and methotrexate which kicked in quite quickly.

And since then I’ve never really had any muscle, like pains or anything like that other than just a few twinges after I’ve walked a long way. And that’s it; it doesn’t affect me in any other way.

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Not surprised

Sometimes people had expected to be told that they have arthritis. David Z said that it was “inevitable” that the doctor would tell him that he had ankylosing spondylitis. He had read about the condition on the internet and thought his symptoms matched. Tina met a parent of a young boy with arthritis. When she described the boy’s symptoms Tina knew that her daughter Lucy had arthritis too.

Jenna was not surprised to learn that she had arthritis because her mum, Karen, also arthritis…

Age at interview 14

Gender Female

Age at diagnosis 10

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So who was with you when you were doing these tests?

My Mum really, cos my Dad’s at work a lot during the day.

And did that help? Her being there?

Yeah.

And did it make a difference that your Mum also had arthritis?

I think it might, it made me a bit more confident with what’s going on, cause my mum understood it as well. So if I had any like thoughts or like any worries then she’d be able to like help me.

And your Mum was there when you were diagnosed?

Yeah I think my Dad was there too.

Did it come as a shock?

Not really cause I just sort of like realised that I probably did have it.

And given that your Mum’s had it, obviously you live with your Mum, I mean do you think that’s had an impact on how you perceived that examination period?

Not really. Not much no.

How did you feel then when you were told that you had arthritis?

I think I was a bit relieved that I found out what it was, and that I could do something about like all the pain and stuff, and I could get like on the medication as well.

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Caitriona thinks her consultant is inspirational because of the attention she gives to young…

Age at interview 19

Gender Female

Age at diagnosis 13

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She does the scan; she’s been fantastic through it all. She you know there are times when they can kind of go, ‘Oh god I get my doctor,’ but at the same time when it comes to it, I seen her work with both myself and with, you know, small children and what she does is inspirational and I mean that’s not a light word, you know, I say that and I mean that. She sat with me, she explained everything to me, she taught me what you know, what happens and why they don’t understand it. She was honest, she says she doesn’t really understand it so I mean that kind of feeling hit when she says "I’ve been working at this for a while and I don’t quite understand it

It was only in 2000 that they actually, all the doctors just, you know, agreed on the name for it which was JIA, juvenile idiopathic arthritis, so her and one of the nurses, one of her close nurses who works along with her, sat and explained it.

They put me in contact with Arthritis Care, they gave me numerous flyers. When you are diagnosed there is; if you’re told, I mean, my doctor has, I mean not everybody with arthritis as a child is treated by my consultant but most people are and when they’re given, you know, when they belong to her, she does, she recognises that it’s not just your joints and the flare up itself. She recognises that it’s the emotional side, it’s the family, it’s your whole world is affected and I mean I couldn’t have asked for more. It’s just trying that within myself to accept what has happened and try to push forward.

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When people receive a diagnosis they will then be able to start treatment under the guidance of a rheumatologist (see the section on Monitoring and treating arthritis).

Shock

Arthritis diagnosis often came as a shock and people described how it came “out of the blue”. People often thought that arthritis only affected older people. When Leigh was diagnosed he was so stunned that he could not take on board anything else the doctor said. Paul was “shell-shocked” when the doctor told his daughter she had arthritis. He had no idea that young people could get the condition. Jazmin described how even her grandparents were shocked when they heard she had arthritis. Even some people who knew a lot about arthritis did not expect the diagnosis. Charlotte X’s mum had arthritis but she was still upset and confused when the doctor said her daughter had arthritis too.

Upset and scared

Being told that you have arthritis can be a very emotional experience. Charlotte X “burst out into tears” when the doctor told her that she had JIA. Kyrun remembers his mum crying when they were told about the diagnosis and Zoe cried lots when her mum told her that she definitely had arthritis. Zoe “didn’t want it to be true at all”.

Sonia felt that her doctor was insensitive when he diagnosed her with ankylosing spondylitis. He…

Age at interview 22

Gender Female

Age at diagnosis 20

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The internet is really dangerous I think because I mean I’d known a little bit about it before because when I’d been researching Undifferentiated Arthritis and I’d looked on is it, I think it’s Arthritis Research UK now they call it, I looked on their website just to find out a little bit about it. And I did think well this is a really horrible thing to have, ankylosing spondylitis, I mean obviously there’s worse things you could get I think but and so then to be going to what I thought was an appointment where we’d be talking about future treatment options and to suddenly be told, Oh no, we’ve, we know what it is now, and having thought, Well I thought we knew what it was last week, kind of, it was, that was already putting me on the back foot and then, my sister had come with me because I didn’t want to go on my own to the consultant because it was the first time I was meeting, because he’s like the superior to the one I’d seen before, I didn’t want to go on my own and she was really happy as well, and couldn’t understand why I was so upset. And of course it was because she hadn’t, she didn’t know what it was. And yeah it was, I just felt really angry I think, really angry that he hadn’t been able to sense that I wasn’t that happy about it, and work out why that might have been, I think.

And it sort of got a bit worse because then I started looking more on the internet to find out all about it, and you start seeing pictures of, I think there’s a really famous one of a man who’s basically parallel to the floor, his back, thinking, Oh my God I’m going to end up like that. And you do sort of scare yourself completely stupid when you look at the internet and what there is, and having not been given any information about it at the time, so the consultant I’d seen before he’d given me leaflets, he’d talked me through all the drug options, physiotherapy and everything and this guy just went, Yeah, ankylosing spondylitis. Whey hay! Like Yeah, Woo, and hadn’t given me any information, how to deal with it, who to go to, or anything like that. It was really a shock. Yeah.

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Some people described having an image in their mind of an elderly person with very swollen joints and limited ability to get around (mobility). They worried about developing similar problems as they got older. Others worried that they might need a wheelchair or Zimmer frame (a walking aid) for the rest of their lives. Tom worried about his future. He said his type of arthritis was not predictable. Sabrina was worried that she would stop growing.

People may also be afraid of what others think about them. David Z was worried that he may not be able to go out with his friends as often as he would like and that he “would be trapped doing nothing for the rest of my life.” Charlotte X was upset when she was diagnosed and said “like a lot of people I don’t like being different.” She wanted to still fit in with her group at school.

Sometimes people mistook arthritis for a ‘terminal’ illness that was life-threatening.

Lu did not understand what arthritis was and was afraid she might die from it. When she was…

Age at interview 26

Gender Female

Age at diagnosis 13

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I think because I didn’t really understand for a while what the arthritis was, and when I got of my sort of blood tests results back and the look on my dad’s face, I thought, Oh, this is not good news And I remember the first question I asked was, Am I going to die from this Because I just didn’t have any understanding or a clue what it was, or what I was going to do or anything like that.

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Kyrun’s mum was very upset when the doctor said that Kyrun had systemic JIA. She thought…

Age at interview 16

Gender Male

Age at diagnosis 6

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I was like happy to know what was going on but I was a bit like disheartened that, like the doctor said there’s no cure for it, but we can dull like the symptoms down and the pain. But it was just like seeing my mum like sat and, opposite to me like crying, that’s the thing that really got to me, that dampener on finally knowing what was going on. But like she said that when we talk about it now that she was just confused and worried and specially because like the doctor said there’s no cure for it, she thought it was like terminal, but when we like asked all the questions and stuff like that they said no, arthritis can’t be terminal at all. And we have like all the proof and stuff like that. So she came a bit more around a bit. I just think like she didn’t want to face up to the fact that, that I’ve got something for the rest of my life but now she just, she just doesn’t look twice, she just knows that I’m me, and I have arthritis. it’s not, Oh he has arthritis, and that’s Kyrun it’s, Kyrun and he has arthritis That’s how I feel that she looks at me now. Yeah.

Yeah. That’s what my mum thought it was. Cos she didn’t know what that "systemic" meant. So and then when the doctors like said about like oh it affects the organs as well, that’s when she thought, Oh right crap it can be terminal But he just said, No it’s not terminal, it just slows and like slows if you like , if I had like a, a sore throat or something then it could spread to get in what, something to do with my lungs, like a chest infection or something like that. From like a cold I could like develop a chest infection so, so she was like, Alright, okay. So it can be like going from the sniffles to an infection. So she knows it’s not terminal now.

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Mixed feelings

Some people had a mixture of feelings about their diagnosis. Even though Kerrie was relieved to have a diagnosis she also thought that it was scary that she would have arthritis for the rest of her life. She felt “alone” when her doctor asked her to try some medicine and come back after four months.

Charlotte Z’s parents were shocked to learn that she had arthritis, but her dad was also pleased that the doctor finally knew the source of Charlotte Z’s pain.

Stacey was devastated when she learned that her son, Bradley, had arthritis. At the same time she said that she had to move on “and deal with this.”

Caitriona had mixed feelings when she was diagnosed. She first felt it was a positive thing but…

Age at interview 19

Gender Female

Age at diagnosis 13

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Well in a sense it was a positive thing because I knew what was wrong with me but at the same time, I mean I think I took it one of the hardest that I’d known anybody to take it. I’ve spoken to people in, in support groups and they said that they were quite OK. I, it completely turned my world upside down. I was taught in school from, in first and second year that children actually couldn’t have arthritis so I kind of doubted the, I doubted what it was and that I could actually have it and for two years after my diagnosis I didn’t go out at all, I stayed in my house. My mum and dad actually were quite worried. They preferred me, they wanted me to speak to people about it, they wanted me to, you know, to find some kind of help. They got Arthritis Care involved, the, and my mum and dad and my consultant who all worked closely to try and take me out of my kind of soppiness, my whole ‘Oops, I’ve got arthritis’, but yeah it just couldn’t; I mean school completely changed. My life with my friends completely changed, the family life changed, everything, it was just the thought one of these diagnosis that you can take and go, "Ooh, I’ve got arthritis, that’s me," it’s something that really did have a huge, huge impact on my life.

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Denial and disbelief

Others were in denial about their arthritis because they did not want to believe that they had the condition. Cat remembers nothing about her diagnosis even though she remembers what happened before and after she got the diagnosis. She says that she has repressed the memory.

Tina says she was in denial about Lucy, having JIA; she didn’t want her daughter to be ill. At…

Age at interview 38

Gender Female

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I was in so much denial about her actually having arthritis because I didn’t want her to be , I didn’t want there to be anything wrong with her, you know

Yeah absolutely.

They took samples of the fluid that came off her heart and they were testing it for all kinds of things so I still had it in my mind that it was nothing to do with her arthritis because I didn’t want it to be her arthritis because I wanted it to be just gone, I wanted it, I want her to be one of the people who grew out of it and… But so whenever I found out that the, that it was because of her having systemic arthritis, I don’t know how, I just, I wasn’t relieved because I was still cross she had it. I was hoping it was going to go away but then I suppose now I realise maybe we’re lucky that it was all she had because maybe if they hadn’t have, if it hadn’t have been the systemic arthritis it could have been something a hell of a lot worse.

But now, you know, I’m not scared of it anymore, I’m not worried so much about her even; I’m not, I’m just, I’m not relieved, I’m happy she’s on the right medication for her arthritis whether it’s systemic or you know, I don’t think you could ask which is worse, is it the joints being sore or the fact that the fluid goes round her heart because every bit of it’s equally as bad, you know.

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Rebecca has been diagnosed with mono-arthritis (arthritis that only affects one of knees). She…

Age at interview 20

Gender Female

Age at diagnosis 18

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When I have my knee aspirated it’s very blood stained. And each time I’ve had it done they blood has got more and more defiant as it were, to the point where it’s basically blood but with a different density cos there is a little bit of fluid there. Which makes me doubt it cos if it’s arthritis from what I know anyway arthritis is a joint problem or something wrong with your joints. But my joint is fine; I know that from having the surgery.

And then there’s all this blood, so to me I don’t know is, to me anyway it feels like there might be an underlying problem like a bleed or a vessel burst somewhere or something like that cos they’ve given me all this medication over the last three years but none of it has really worked. And then the blood has got more and more defiant and the swelling is still there and it hasn’t really done anything so yeah. It feels to me anyway like there’s, it’s not arthritis because there isn’t anything wrong with my knee and there’s all this blood which can’t be explained. So it’s, I just find it a bit odd.

Where have you got the information from? When it comes to arthritis then?

The internet mainly. I sort of, when they first mentioned arthritis and they first started calling it this mono-arthritis, I was like, Right okay but I didn’t, it was really weird cos I did the typical I suppose young people thing is, when they were like Oh arthritis I was like, Well arthritis is what happens to old people. You know what I mean; this is what happens to you when you get older, not at 20 I was like, I was like No it can’t be arthritis. You only get it when you’re older And of course then it was like, No you can get it at any age It was like, Right, okay

And I started looking, because they couldn’t name what kind of arthritis it was, and cos I wasn’t still convinced that it was arthritis cos I’d started looking on the internet and things like that and different side effects and different I don’t know signs and things like that for different types of arthritis, and to be fair some of it makes sense, but because there isn’t any damage to my joint it’s odd. Yeah. But I mainly got my information from the internet and I’ve asked, when I’ve been there I’ve asked questions and things like that. But yeah other than that it’s just sort of been named as arthritis, but it hasn’t really convinced me.

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Too young to remember

Some people said that they were too young to worry about the diagnosis. Sabrina was not concerned when she was told she had arthritis. She said “I wasn’t even bothered because, I’ve got plenty of years of time in my life.”

Sara said that she was too young to worry about being diagnosed with arthritis. She felt her…

Age at interview 21

Gender Female

Age at diagnosis 12

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I’ll start at the beginning. I was about 9½ and I had a swollen left thumb and so I went to my local GP who wasn’t there and I saw a locum instead and he said that it looked like arthritis which was a bit of a shock to my parents. I was young so I just thought, Oh I don’t really know what that mean, so I didn’t really mind too much. And, and he referred me to the consultant I still see now at my local hospital. And the first thing she asked me to do was put my, both my arms straight and when I did that I noticed that my left arm didn’t go straight, but my right arm did.

And so I had it, I had it, the arthritis in my thumb and my left elbow and it was strange to me cos I’d never really looked at my arms like that, I’d never said, Oh, can I put my arms straight or anything. So I just, and again I still thought it was just one of those things, it didn’t really mean much to me as a child, I’d heard of it and I think I knew what it meant but it didn’t really impact me too much. It sort of, I just thought, Well that’s OK, I can live with that. That’ll be fin.

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Information about arthritis

People often felt confused and afraid because they were not given enough information or that the information had been too difficult to understand.

Ryan said the doctor used “big words” that were “difficult to absorb”.

It was very important for people to feel they had enough information and at a level they could understand. Paul said he felt “uninformed” when his daughter was first diagnosed and he went to Arthritis Care to have questions answered. Kyrun was given a book to help him learn about arthritis but it did not have information about his type of arthritis. Tom found the leaflets from the hospital “scary” because they were designed for older people and full of stories about surgery. Chantelle has learning difficulties and was given too much information to read from the hospital.

Marie’s son, Ryan, was scared because he did not know what arthritis was. The doctor could have…

Age at interview 33

Gender Female

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He just thought he’d caught a, because he knew it was a disease, he thought he’d caught a disease that was going to make him old and kill him basically. But I think the doctors could have helped with that though at the beginning to be fair because even through his diagnosis and stuff, they were just saying, they were just saying, You’ve got polyarthritis, we’re diagnosing you with polyarthritis and then they’d say, This is why your knee’s like that Ryan because you’ve got arthritis So he’s just assumed he’s got arthritis and that’s it now, he’s old, he’s got arthritis and he’s going to die but if they’d explained to him that a lot of children have arthritis, he’s not the only one, it can be helped and it he can have a decent life with it as well. I think that should have been explained pretty early on to him so he didn’t; his imagination didn’t run wild in the first place because he, he, his imagination can get the better of you I think especially when you haven’t got a lot to go on.

They didn’t explain the juvenile part neither to him that it, that to him, he took that juvenile meant young people but meant he caught arthritis as a young person so he was going to grow old and arthritis, that’s how he took it. But I think if they’d explained when they meant young people because there are lots of young people with it, it would have helped. it’s just not you that’s caught a disease, that’s an old people’s disease, is what he, it can, everyone does consider arthritis to be an old people’s disease to be fair. I think most adults do so he hadn’t gone to; his imagination was there to start I think.

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Parents and doctors can help young people learn about arthritis.

Marie helped Ryan learn about arthritis by using simple words. When Tom was first diagnosed his doctor used a model of a knee joint to show him how joints work and what arthritis does to joints. It also helped when people felt that they could ask questions about the diagnosis. Some said doctors cleared up any confusions or misconceptions they had.

Caitriona thinks her consultant is inspirational because of the attention she gives to young…

Age at interview 19

Gender Female

Age at diagnosis 13

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She does the scan; she’s been fantastic through it all. She you know there are times when they can kind of go, ‘Oh god I get my doctor,’ but at the same time when it comes to it, I seen her work with both myself and with, you know, small children and what she does is inspirational and I mean that’s not a light word, you know, I say that and I mean that. She sat with me, she explained everything to me, she taught me what you know, what happens and why they don’t understand it. She was honest, she says she doesn’t really understand it so I mean that kind of feeling hit when she says "I’ve been working at this for a while and I don’t quite understand it

It was only in 2000 that they actually, all the doctors just, you know, agreed on the name for it which was JIA, juvenile idiopathic arthritis, so her and one of the nurses, one of her close nurses who works along with her, sat and explained it.

They put me in contact with Arthritis Care, they gave me numerous flyers. When you are diagnosed there is; if you’re told, I mean, my doctor has, I mean not everybody with arthritis as a child is treated by my consultant but most people are and when they’re given, you know, when they belong to her, she does, she recognises that it’s not just your joints and the flare up itself. She recognises that it’s the emotional side, it’s the family, it’s your whole world is affected and I mean I couldn’t have asked for more. It’s just trying that within myself to accept what has happened and try to push forward.

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When people receive a diagnosis they will then be able to start treatment under the guidance of a rheumatologist (see the section on Monitoring and treating arthritis.)