“Why me? I don’t fit the mould … I am a freak of nature”: a qualitative study of women’s experience of gout
- BMC Women's Health
Authors: Jane C. Richardson, Jennifer Liddle, Christian D. Mallen, Edward Roddy, Suman Prinjha, Sue Ziebland, Samantha Hider
Publisher: BioMed Central
Sample and recruitment
Results and discussion
(n = 14)
Age group at interview (years):
Age group at diagnosis (years):
Time since diagnosis (years):
Attacks in last 12 months:
Living with one other person
Living with more than one other person
Current work status:
Experience of onset, help-seeking and diagnosis
The GP looked at my foot […] and said, “If you weren’t a woman, I would say this is gout.” And I thought, “Ah, no, it can’t be,” because I had in my mind all of the old wives’ tales that we have in our minds about gout. And also I don’t drink excessively and all of the things that people associate with gout. And so I didn’t initially take that throwaway comment that seriously. (Joanne)
So I went to the GP and explained all the symptoms and she said, “Well I don’t think you’ve got gout but I’d better test you for it because your symptoms are sort of connected with that.” And she said, ‘Well it's very unlikely because-female, and your age, and you’re not particularly overweight, or anything, but we’ll test anyway.” (Georgina)
Erm, I suspect, I suspect people might be surprised. As I said earlier, I think it may very well be that some women go undiagnosed because it’s not spoken of as something-as a condition that women can be diagnosed with. (Joanne)
No doctor, no medical professional. Because I think-I’m not sure how much GPs know about it, to be honest. And I’m not trying to belittle them. It’s just that it’s not one of those red flag things that, “You have to read this.” And then I’m also not erm a very representative example of someone who has gout that they have to worry about. I’m not a 70-year-old Indian man or an 80-year-old English man, for that matter. I’m, I’m young and, and a female doesn’t really come that often to them so I don’t really think they know much about it. They don't, I think. (Lily)
Understanding of and finding information about gout
I’d be interested to know if there were people a lot younger than I was. Perhaps if it is connected to the menopause or to age, or age related for women, or perhaps because of the oestrogen or something like that.Had you heard of that [gout more common after menopause] before I just mentioned it? I had vaguely, but I’d forgotten, yeah. But it’s never something that’s particularly prominent when you read articles or anything (Judith)
I just thought it was old men that drank Port that got it in their big toe. Err I knew that it was painful, but I never thought a young woman who drank pints of lager could get it. Err no I don’t know. I don’t know. It’s one of these once you hear about … until you’re diagnosed with it you don’t really know. (Mary)
Well, it just happens, doesn’t it? There’s nothing you can do about it. It, it, the stereotype is there, and it may be quite wrong. I mean, you, you never see pictures of, erm, elderly ladies with their feet up on stools and swathed in bandages. It’s always these portly gentlemen, isn’t it? It, it’s, it’s just the, sort of, tradition that’s been handed down, and it’s a pity because gout has become the butt of people’s humour, when really it is quite a serious and painful ailment. (Cheryl)
I think…it’s not normal kind of thing. Because you do look at everything and you know the pictures, any of the joint pictures, you can tell they’re men-either that or really hairy women [laughs] but-and you think well you know that can’t be erm…have they made a mistake kind of thing. I know it’s not a mistake but I am the only woman, as far as I know, out there with it […] I am just intrigued to know why me really. Because I don’t fit the mould as-as such. I am a freak of nature. (Georgina)
I think so, yeah. Because you-you don’t associate-you associate osteoarthritis, osteoporosis, more with women, but you wouldn’t really-well in anything I’ve seen, you wouldn’t associate women as having gout. So I think it is-I mean it’s obviously quite rare because a lot of the data you look at is the same sort of thing, you know, that you’re more likely to have it if you’re overweight and male and fifties and…so I would say it’s very erm…very different, and quite-a bit more discriminating towards women, because you don’t fit the bill. So I erm and then I suppose it’s not-I would assume, there’s not that many women out there because you can’t find a lot of information on women with gout. And what impact it can have. Apart from the general information then. (Georgina)
But from a woman’s point of view, get on the forum and try and get in touch with people, especially women who’ve got, because they are going to be more understanding. Because especially from my point of view the men that I’ve come across with it, have abused their bodies, and know then themselves they’ve got gout through doing what they’ve done, so I think-but from - normally from a woman’s point of view, you know you - you don’t drink as heavily as men and that and because it’s more that we’ve always thought it was connected to drink, but I just think it’s beneficial for women to be in touch with women who’ve erm-who’ve developed it-definitely. (Georgina)
Impact of gout on identity
I: And, do you think it makes a difference being a woman with gout?
R: Probably because of the shoes. Yeah, probably does. Because you do feel more mannish I think. Although I shouldn’t worry at my age should I? If you’re 19 up here [taps head] and you’re not this old bat, you know?
I: I don’t think, you know, I think you’re a woman at any age aren’t you?
R: Yeah but, you know, society like, you do get to that invisible age where people just don’t see a middle aged woman anymore. But in your head you’re still that young girl, you know, with that young girl’s feelings.
I: And is that something that you think having gout and having to sort of change your footwear, do you think that sort of err moved you towards that?
R: Yes, yeah, definitely. I did, I mean, and I noticed all the other women’s footwear at the wedding and there was loads of really, really high shoes. I mean mainly young girls but there were some really classy shoes there and I thought, ‘That’s me goodbye forever’. You know. I knew that really and, like I say, when I watch the television and I see the girls on the television come out in these sort of four, five heel, inch heels, and I think, ‘Oh I wish’. [….] … it’s part of who you are isn’t it? (Wendy)
If I do have to go out of the house, I’ve got a huge pair of flip flops on, I’m shuffling, and it’s very uncomfortable. To be honest with you, [researcher’s name], I wouldn’t go out of the house, it would be too uncomfortable. You […] cannot wear your shoes. And then people start to look because you’re shuffling, it’s uncomfortable. I’m usually pulling my face because I’m in pain. [laughs] I would tend not to go out of the house at all, that’s why I say it’s a disabling disease to me. (Mandy)
Impact on roles and relationships
And I suppose in your foot, because where you’ve got to have your feet to get out and about, I mean it’s - sometimes if it’s in your hand you can rest that but you can’t rest your feet. And in work if I’ve had a particularly busy week I come home on a Friday and the elbow’s painful, the hand is painful, but I wouldn’t class that as an episode as such because I always class that initial one, I sort of scale them all compared to that initial one and they’re nothing like I had then, so I’m thinking that’s just part of it, you know, you’ve just got to deal with it. Take a couple of painkillers and then normally the following day… so on the weekend I think my husband’s doing more of the manual cleaning than I used to, because I do find that a bit of a struggle, and he’s marvellous and he’s taken on a lot of the ironing erm chores and things because I find that difficult sometimes, it’s the constant with the iron and that, but erm I just try and get on with things really. (Georgina)
So erm I think it does impact everybody really. It’s been an impact on my family because I - I don’t over exert myself and I’ve always been the type of person that I - I won’t ask anyone to do something because I’d rather do it myself. You know, the self-satisfaction there of doing it yourself. And to have, you know, my husband take on a lot of responsibilities, for instance now bending over and cleaning the bath, like if you’ve got to hold on with one hand, and clean with the other, you know, I don’t like risking that either. And he often jokes, ‘Oh, you’re only putting it on now because …’ But I don’t like asking people to do things for me, so I do get frustrated quite a bit. And erm with the kids, when you’re in pain sometimes you know you - you’re quite sharp with the kids and they’re sort of looking and you’ve got to explain then you know but…especially for my 13 year old, she doesn’t know - really know what’s going on half the time. She doesn’t even know what the condition is I suppose […]. And it’s the fear of the unknown because always in the back of your mind that you’re going to - is it going to be worse? Am I going to have a flare up?, and so you’re over cautious then. (Georgina)
Well luckily the people that come to look after me as it were, they know that I can get - it does, it makes you irritable because it’s painful and it’s - it’s uncomfortable and you want to go to the loo but you know that simply just by getting up and shuffling to the loo, it’s like going to be a main thing to do. And it’s going to be painful to do. So people do come and I am ratchety, but they know it’s because I’m in pain. (Mandy)
Erm because then err we’ve noticed that in a month’s cycle I’m more likely to get gout or an attack the week before I have my period, which is also the week wherein it’s like the end of fertility, the highest fertility, which is when erm I guess there is more desire for sex. [hmm] And bodily as well, the fluids are there, etc., etc. And then that is when you have the gout, so it just - it doesn’t really work very well like that, because then you cannot do much, but, but that’s when it happens and then so it doesn’t really work very well. No, but it does help pain relief, which is weird. (Louise)