Gout

Sources of support for gout

Support from family and friends

Many people we spoke to welcomed and appreciated help and support they got from family and friends. This included practical help with things like walking, driving or getting to the toilet, as well as being understanding and sympathetic. Hazel feels that a person living with someone who has gout can understand it better than other people because they have seen for themselves the effects it has. 

Jill has very supportive friends and neighbours who help with everyday tasks.

Jill has very supportive friends and neighbours who help with everyday tasks.

Age at interview: 53
Sex: Female
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I have got a good support system going here where I live, and everybody is aware about my conditions and aware that I have gout, so if they don’t see me, then they bob over and it's like I'm usually on the sofa, and it's - they’ll come in and they all see that I have cups of tea, see that somebody makes me a meal for the day, and just generally looks after me. But having gout, you can't have anything on your feet because it's painful, not even a little sheet cover, because it's so painful when it's on your feet. It also has gone - because I saw a doctor at [the hospital] a few months ago - into my hands now. That again is very disabling for me because I can't undo jars. A typical day is maybe undoing a jar of beetroot or undoing a jar - or even a milk bottle, unscrewing the top off the milk bottle, I have no - I'm unable to undo anything in this house. I usually leave the things on the window and the guy next door will come and undo them for me because he sees them getting them lined up, and he knows it's a sign that I've had a go, found it impossible, so, “It's waiting to be undone when you’ve got a moment please”. So it's just - I would say gout is very disabling to anyone.
Joe’s wife used to bring him a large bowl of ice to put his foot in. Sam’s husband took on more of the cleaning tasks in the house. Eddie was pleased that his daughter was a good listener. Jonathan asked colleagues for advice. 

Jean says it makes a difference knowing that she has family living with her who can help if needed.

Jean says it makes a difference knowing that she has family living with her who can help if needed.

Age at interview: 78
Sex: Female
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There’s always somebody here that will, sort of, fetch and carry and do bits for me, and, sort of, get me the cold water or the warm water or the... I’ve got so many things to help with the arthritis that I, sort of, try anything for any pain I get [laughter].

So that was the...?

It does make a difference having people in the house, yes.

Did it affect your mood and how you were feeling at the time, when you were in pain?

I suppose I got fed up. I, sort of, thought, “Well, it’s something else that I’ve got to put with,” you know, but you get over it. 

When you were feeling fed up and you were in pain, do you think it made a difference to your relationships with other people, so maybe other family members or...?

Not really, no. It wasn’t their fault, you know, they did all they could to help me, so...I was probably a bit more ratty, I don’t know. They wouldn’t tell me if I was [Laughter], but I was quite possibly a bit more ratty, I suppose [laughter].
Although some people felt no need for extra support, others valued help with finding information about gout from friends or relatives. A few were cautious about accepting help from other people because of fears that they might accidentally cause more pain. Some people preferred to be left alone. Several were aware that their gout had an impact on family members or friends. (For more see ‘Impact of gout on family, friends and relationships’).

Harry says it is important for families to be tolerant if people are behaving differently during an attack.

Harry says it is important for families to be tolerant if people are behaving differently during an attack.

Age at interview: 78
Sex: Male
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For the person that you're living with, it's important for them to know that if you're having gout, that it is not pleasant. And try to be a little more tolerant, if they can possibly be a little bit more tolerant towards you, when you're going to fly off the handle for some reason or another. It's…it's not the usual state of affairs, if it was the usual state of affairs they wouldn't be living together anyway, or not for long [laughs]. It is a - in a way it's a joint disease, if you pardon the pun, [laughs].
People sometimes found it hard to listen to family or friends making jokes about gout (For more see ‘Historical perceptions and myths about gout’).

Living arrangements

While some people who lived with others felt that their gout impacted on these people and their relationships with them, they usually appreciated the support that they could provide. 

People who lived alone felt that they were particularly affected by gout. For Eddie, going out and meeting friends was important because he lived alone. Attacks of gout had a big impact on his social life and the amount of company he had because he could not get out and about. People talked about the importance of having someone around to help out in little ways, like making a cup of tea. 

Carole appreciated a friend bringing her dinner round because it was hard for her to cook a meal when she had attacks in her feet or ankles.

Carole appreciated a friend bringing her dinner round because it was hard for her to cook a meal when she had attacks in her feet or ankles.

Age at interview: 64
Sex: Female
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Because I live on my own, it's, it's stopped me doing things, but, other than that, I've managed in the main to sort of eat. Just, you know, just carry on. Or I've, you know, I haven't gone out for a daily walk with the dogs or something like that. And I think I can remember an instance where a friend of mine brought me a dinner round on a plate once [laughter]. She doesn't live too far away, and that just saved me going in the kitchen and cooking because, as I say, if it's - if I've got it in my ankle, just even struggling into the kitchen to make a drink or cook something, it just hurts to get there and it hurts to get back again [laughter].
Val lived in a large family and found it difficult to manage all the household chores when she had attacks because there was a lot to do. 

Support from other people with gout

Harry found it useful to swap stories with other people who had gout. He felt that they were more likely to be genuinely interested in talking about it than people who had not had it. Like others, Harry found it useful being able to compare his symptoms with other people and to know that he was not alone. He felt lucky that his gout was not as severe as some people he came across. 

Paula found it reassuring to know that her symptoms and the intense pain were typical of an attack.

Paula found it reassuring to know that her symptoms and the intense pain were typical of an attack.

Age at interview: 46
Sex: Female
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I went on a couple of forums on the Internet when I had the diagnosis, just to sort of see what other people are saying and what their experiences were. I did actually find that quite useful. 

What did you find particularly useful about that?

The fact that it was all ages, you know, it wasn’t like I thought - just old men that get gout. People talking about their diets that they’d had to change, you know, what they’d done. And also, talking about the pain, because I did think that perhaps I was just a wus that it hurt so much, but from what I read of other people’s experiences – they all said that thing about just a sheet on my foot being just agony. So I didn’t feel quite such a wus then [laughs].

So it was reassuring?

Yes, it was. To know that actually – within the boundaries it was actually normal - what I’d experienced. 
Others shared information about medication they were taking or practical tips that had helped them. Hazel has a number of relatives with gout, so she knows they understand what it’s like when she talks to them. Other people did not feel the need to discuss their gout with others.

Eddie joined an internet forum for people with gout. He finds it reassuring to chat with people who know what he is going through.

Eddie joined an internet forum for people with gout. He finds it reassuring to chat with people who know what he is going through.

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You can see what other people are taking and – and it might help you, you’ve got people who understand what you’re going through, and you understand what they’re going through yes, it’s just nice and you feel for people who say, “This is my first time, the first time I’ve got gout it’s so painful.” And you feel for them and then they’ll probably get messages back, supporting them and then you get a little message back, “Thank you.” You know, so it must help somebody, it’s helped me I know and I’m sure it helps me, when I send messages to Americans, we’ll never meet and we’ll never know who we are, but it’s just nice to get a reassurance, “Yes we know what you’re going through.”
A number of people were not aware that they knew anyone with gout until they were diagnosed themselves. They were surprised to discover how common it is. Pat thought that gout was something people didn’t talk about often. Several people wished that they had the opportunity to talk face-to-face with other people with gout. Like some others, Jeff was glad to help others by passing on what he had learnt about gout.

Once she was diagnosed, Jacqui discovered she knew other people who had gout.

Once she was diagnosed, Jacqui discovered she knew other people who had gout.

Age at interview: 56
Sex: Female
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When you first found out, did you know anybody else who had gout at that point? 

I'm not sure whether I was aware of anyone - I might have just heard it in passing, but it was only once I was diagnosed that I then discovered other people who had been diagnosed and then people really, you know, when they discover, "Oh, you're a fellow gout sufferer. It’s sort of like ‘join the club and let's share stories’." A bit like war wounds, I guess, I don't know. Yeah [laughs].

Is that because you were mentioning you had gout and then it came out in conversation? Or do you think you were just sort of more alert to the possibility of, you know, hearing other people mentioning it? 

I think a combination of the two. I think that because I had heightened awareness one then sort of pricks up one's ears and, and sort of takes - or asks questions that you wouldn't otherwise ask. But I think also that having struggled - I must have almost struggled for a month before it was diagnosed and I guess for some people that's probably a very short time. I think it's quite likely that some people might struggle a whole lot longer before it being diagnosed. But because of the struggle and the pain and here I was, a physically active person now limping, unable to wear closed shoes, you know, then probably people also noticed and asked questions. So I think it was a combination of both heightened awareness but also the experience, and then other people empathising and then one makes the connections, as it were.
Religion and spirituality

Several people felt that their religious and/or spiritual beliefs had helped them to cope with the pain of gout. A few found praying helpful if they were feeling ‘low’ or in pain. Jill believes in energy therapies including reiki – a spiritual practice based around the idea of universal life energy. Other people had religious or spiritual beliefs but had not thought about them in relation to gout. 

Eddie prays about his gout. He also appreciates the support from his church community.

Eddie prays about his gout. He also appreciates the support from his church community.

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I am very religious, quite religious shall we say. I go to church every Sunday and yes I do pray, you know when I get my gout, but I always think well gout, “Lord you know I’m pretty low down in the pecking order, you know you’ve got a lot more serious things to worry about than my gout”. But it does, I think it helps me when I say a prayer, you know, that I’ve got my gout that the good Lord knows I’ve got it and, no I think He helps me in my spiritual way. We have a very good church [where I live], you know it’s a village, we have a wonderful vicar [name] and [name] another vicar and it’s very close knit and you – and yes when you talk to them you – you feel safe in a way, it’s hard to explain. And, yes I think it helps, my religion, although I know as I say I’m low down in the pecking order, it does help me yes.



Last reviewed December 2016

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