Feelings about the diagnosis of gout

People we spoke to recalled having lots of questions when they were first diagnosed. Finding out how to ease the pain took priority for most, as well as wanting to know:

  • How gout would affect their everyday lives
  • What they could do to manage the condition and prevent another attack
  • What the treatment options were
  • Why they had got gout
  • Whether they could change their lifestyle to manage the condition

When Harry was diagnosed, his main concern was to ‘get rid of’ the pain and he did not think about having to deal with gout long-term. Tony also saw gout as a temporary condition and did not realise that it was permanent. In contrast, Jonathan talked about going through a process of adjusting to the idea of having a long-term condition that he would have to manage for the rest of his life. Similarly, John X knew that he was going to have to manage his gout, but felt that he would not get any help from health professionals.

Eric was unhappy about being diagnosed with gout and wondered if the pain he was having would be permanent.

Age at interview 87

Gender Male

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The skin on my foot, the right foot, was sort of shiny and so tender to the touch it was unbelievable and there was no, you couldn’t flex your foot or your toes, and it seemed to spread from, starting there into the ankle until it was; it was really, really painful.

And had you ever heard of gout before?

I’d heard of it, I’ve heard of other people; I knew a colleague who was a gout sufferer and he said it’s something you don’t want.

How much did you know about it?

Very, very little, very little.

So what was your sort of, initial reaction when you went to this clinic and they said you’ve got gout?

Well I wasn’t very pleased about it and I did wonder, Is this something that’s going to be permanent? At that stage I wasn’t aware that it was something that came and went, I thought if I’m going to be, a sufferer like this, well I didn’t want to know.

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Some people, like Shirley, were not surprised by the diagnosis because it confirmed what they already knew about the symptoms of gout. However, most were shocked or surprised because they had never considered that their symptoms could be gout.

For some people the diagnosis was confusing because their lifestyles were very different to those they associated with gout. This was particularly the case for younger people, women, those who felt that they led healthy and active lives, people who drank little or no alcohol, and people who did not have a family history of gout.

After recently changing to a healthier diet and doing more exercise, Sam was baffled when she discovered that she had gout.

Age at interview 41

Gender Female

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My exercise was more intense then so I would have thought the impact of the joints, I would have maybe have developed it earlier if I was going to develop it. So I don’t know – I’d love to be able to pinpoint why it actually came on me then really, but I’m never going to know I know, but you know I was walking everywhere, gym, and swimming is obviously not a high impact on the joints, but I was doing you know a lot of cardio and things like that which would cause a lot of impact and, nothing back then.

And did you add anything sort of in particular into your diet that you’d never eaten before or was it more just changing quantities and?

I suppose I started eating more fruit than I had done before which was a major thing and obviously more vegetables, and probably more of the citrusy fruits, because they weren’t at the time when you were looking into research and that, they would burn off fat quicker because of the acid in them. So I suppose I did eat a lot of tangerines and oranges, and obviously the vitamin C level, but apart from that, like I’d cut down on the red meat. I ate more white meat or I ate more fish, oily fish, which was another thing, I mean that’s supposed to be really good for the joints and – so I can’t – apart from that it was all good, I cut down on my alcohol, because that’s part of the healthy eating programme, and – because I love my chocolate I only limit myself to one small bar a day, but for me to be able to have the chocolate on the diet plan I’d have to cut out the alcohol. And the days I had the alcohol I’d give up the chocolate and that kind of thing, so I was eating a really, really healthy diet, small meals often, to keep the metabolism going, plus like I said keeping active. So it was reallyI was completely gobsmacked because when I went on then and looked at the typical person with gout men in their late fifties, portly, you know, portly fellows, rich living, I was thinking, no, that’s not me [laughs].

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Val felt angry about getting gout. She ‘felt a bit cheated’ because she had got it at a younger rather than older age. Naresh also wondered why he had gout at the age of 25 when his father had not been diagnosed until he was in his 50s. The thought of being diagnosed at a young age, and having gout for many years, was worrying for Paula.

Jonathan, who had expected to be diagnosed with an injury, was unhappy about the way his doctor told him that he had gout. He was initially told that he had arthritis (but not specifically gout) and advised to visit his GP again in two weeks. He left the appointment feeling shocked and upset – he was in his 30s and thought of arthritis as a progressive condition that affected older people.

Some women were diagnosed after several months or years because their GP thought it was unlikely that a woman would have gout. Sam wondered if her GP had made a mistake with her diagnosis because she did not know of any other women with gout. However, Hazel felt that gout was a condition she would have been unlikely not to get because so many of her family members have it.

Gout was not surprising or novel in Hazel’s family, so she felt that it was relatively normal to have it herself.

Age at interview 32

Gender Female

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I started having gout about seven years ago now, and I didn’t really know – I didn’t bring it to the doctor or anything like that. My parents both have gout and they said before that on my father’s side it’s because my grandmother used to cook a lot of entrails and all of that. And then on my mother’s side I don’t really know, but they both have it. And so when I was in my early 20s I had it. And it was just a matter of, “Well, they both have it, so I have it. Cannot really escape it.”

And then it wasn’t that bad, because I have it, I don’t know, once in six months, this, this little pain. Cannot really remember so much about it now, because it’s progressed quite a bit now. And then a lot of my family have it, so I have a lot of my male cousins that have it. And theres a lot of boys in our family. I don’t have a lot of female cousins. So I didn’t really notice before that actually I was the only female that had it, apart from my mum, so on the other side. And so on my dad’s side, everyone has it. Or maybe one in every family or two in every family. So it was sort of a natural thing for me, just because everyone had it.

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John Y felt strange about being diagnosed with gout. He knew that people often associated it with kings like Henry VIII, and felt that it was his own fault that he had it. Several people talked about their perceptions of gout being ‘a rich man’s disease’ or a condition that was caused by consuming too much port or red meat (for more see ‘Causes of gout‘ and ‘Historical perceptions and myths about gout‘).

While many men and women did not think that they were the type of person to be diagnosed with gout, Alan saw aspects of his lifestyle that matched with the stereotypes often associated with it.

Alan found it amusing that he enjoyed drinking alcohol and had now been diagnosed with gout. He thought that his friends would see it as his own fault.

Age at interview 73

Gender Male

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And how did you feel when you discovered you’d got gout?

Alan:Well, slightly amused I’ll be honest because, everybody says, Ah gout, it’s all to do with drinking and of course, I must admit that I do drink [laughs], so I thought I know what my mates are going to say, Aye serves you right you know [laughs], It’s come to you, but I mean, it isn’t really a lot to do with drinking, because one of the most ironic things is, I was in hospital for four weeks waiting to have a procedure done and of course with not a spot of any alcohol at all, and this was the four weeks I got quite severe gout [laughs], so I thought, Ah there we are, that’s proved that wrong, it’s nothing to do with drinking, well at least it wasn’t that time.

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Ivor played a lot of sport and was worried about the impact of gout on his lifestyle. He was relieved to find out that it was more common than he thought and could be controlled.

Some people felt embarrassed about being diagnosed with gout either because they saw it as an older person’s condition, or because they thought that other people would think they were leading indulgent lifestyles (for more see ‘Historical perceptions and myths about gout‘).

Jacqui was concerned that people might think she had been drinking too much alcohol.

Age at interview 56

Gender Female

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When you were told that you did have gout, what was your reaction at the time? How did you feel?

Well I was really surprised because it wasn’t something that I had any familiarity with and theres always a part of it that you sort of thinks of the old wives’ tale of gout as to do with drinking too much. So one feels a little concerned that people might judge you around drinking too much alcohol and, you know, that it’s something to do with that, because it really has those – what do you call it? What’s the word for it? Connotations, yeah. There are the connotations that it’s something to do with overindulgence, too much red wine, too much red meat, red nose, that sort of thing. So I, I guess I felt a little discomfort about it.

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John Z did not feel embarrassed by the diagnosis because of his medical background and knowledge that he had not done anything to cause gout.

Age at interview 43

Gender Male

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I didn’t kind of feel any negative connotation myself, as such. Because at that stage I wasn’t overweight like I am now. So that didn’t bother me too much. So yeah, I mean – and I think, I think when you’re medical, I think you’re – I don’t think you view risk factors in the same sort of stigmatising way. You think well that’s just what causes that’ you know, and you just have to address that. People can make the lifestyle choice, put it that way. And it’s up to them to make the choice, and if it’s something that they can’t help, then you know, theres no point stigmatising them for it.

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Being diagnosed was a relief for many people. Before diagnosis, the extreme pain made Ian worry that he might have a life-threatening condition. He was glad to have a diagnosis and to learn that the symptoms could be treated. Like John Y, most people who had not been diagnosed straight away were pleased to get a diagnosis but wished it had been made sooner.

Michael was relieved to know what was causing the pain. He questioned why he had got gout.

Gender Male

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When I first found out I was in hospital because gout put me in hospital, basically. And I was glad to know what it was, obviously. I wasn’t glad I had it. I didn’t know much about it. As I say, it was – as I know, theres a lot of ignorance about it. Theres a lot of, as I say, old wives’ tales. So, you know, you don’t – well, I never felt that I was particularly unhealthy or, you know, so you think well why did you get it or, you know, is it, is it hereditary? And, as I said, my father had it so it prob – it seems to me that it’s hereditary. I’m not 100% sure, but it seems to me that it is. So yeah, you felt – you just feel a bit hard done by, basically.

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Jeff, who was diagnosed a number of years ago, said that he was not affected or worried by the diagnosis partly because he was young and partly because he could not change it. John Z and Peter believed that they were less likely to be worried about being diagnosed than other people because of the experience they had gained working as doctors. Peter found it slightly ironic that he was diagnosed with a painful long-term condition that he has an interest in professionally.

Some people, like Sue, accepted their diagnosis as just ‘one of those things’ and were not particularly fazed by it. Sue’s father had gout, so she already knew about the condition. However, other people whose family members had lived with gout, were worried when they were diagnosed themselves because they felt they knew what to expect. For Eddie and Val, the diagnosis made them reflect on how they had felt about relatives with gout.

Val wished that she had been more sympathetic towards her parents. Being diagnosed helped her to understand how bad it had been for them.

Gender Female

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Both parents had gout. I don’t know whether my grandparents, because they all died fairly young on both sides, so I don’t really know. But my mother got it first. Shes about three years younger than my father. I think she would have been about 50 at the time. And because my mum had had a lot of ill health and wed got so used to it over the years you sort of disregarded it. You thought, Oh yeah something else. Then my father got gout and they were great – they loved travelling, they used to have three holidays abroad every year and they used to vary where they went in the world. Well one year my father came home from this holiday and he was absolutely mortified. He had to come home in a slipper from the aeroplane and he was so embarrassed because he was a very shy man, really really embarrassed and he said, That’s it I’m never going abroad again because of this gout you see.

So he looked into it, because my dad was like that, hed read up whatever he could and he did this really restrictive diet. He would only have chicken or fish, he wouldn’t have any red meat at all. And he did this cider vinegar which was absolutely awful, he lost a load of weight because of this diet. And I didn’t really give him the sympathy, or my mum, the sympathy that I should have done. Looking back now, you know, 20 years on, I think, Oh I shouldn’t have been like that, I should have been more gracious to them. But when I got my first attack I couldn’t believe it. I just could not believe the pain and the discomfort.

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Jean, Kate and John Z all questioned the nature or accuracy of their diagnosis. Jean had previously had her toe joints replaced. The two GPs she saw found it difficult to understand how she could have gout. This left Jean feeling confused. Kate also felt confused but about the difference between her diagnosis of gout and an earlier diagnosis of (calcium) crystals in her joint. John Z, a doctor, knew a bit about gout and, when he was diagnosed with it himself, was worried that he might have other associated long-term problems. He also felt uncertain about the accuracy of his diagnosis because he knew that a blood test cannot confirm diagnosis. He had not had a fluid sample taken or come across anyone else with the ‘mild gout’ symptoms that he had (for more see ‘Tests and diagnosis of gout‘).

Tests and diagnosis of gout

A diagnosis of gout is often made based on the symptoms that people have. These symptoms commonly include sudden onset of joint pain, heat, swelling...