Experiencing and managing irritable bowel syndrome prior to using self-management
The baseline for 'change' is viewed here as the way in which people managed IBS by themselves and as a result of being in contact with services. People described IBS as a physical and chronic condition, the consequences of which increased over time. What started as a relatively minor complaint became to the IBS sufferer more significant over time and was compounded by an increasing sense of a personal lack of control over symptoms and their management:
'I think it's quite... it's more debilitating than you thought of at first. I think at first I thought Well this is a damn nuisance", but then when you've had it a lot of times, it really, it is debilitating (laughs)' (ID. 338; Guidebook only; relatively newly diagnosed)
Of central significance was the need to retain a sense of normality and ability to continue an ordinary everyday existence. Strategies for managing and coping with IBS were varied. People had made substantial changes to daily routines, food and eating, and other cognitive strategies as a means of managing symptoms as they arose.
'I used to get very bad, like, as if someone's wringing out the washing in my tummy, bad pains and I just used to take (Buscopan?). And I used to take, just roll up a pillow and stick it on my stomach and lie on it and just, you sort of pass out 'cos it's so painful. ... and it's usually (...) on a morning, usually.' (ID. 182; Guidebook + Self-help Group non-attender; diagnosed some time ago)
'...and if I were going shopping ...I used to think "right there's a toilet there, in Bury there's a toilet there" and any slight little bit of pain we used to edge straight towards the toilet, just in case, and that's how it were, rules, you know, "where's the toilets?" You were frightened of going without a toilet' (ID. 191; Guidebook only; diagnosed some time ago)
'Trial and error. It was very new to me so it was a case of trying things off the shelf, the peppermint tablets and that kind of thing and then really identifying food that triggered it but, more often than not it was stress related so it's very much kind of stress management thing. I just tried everything really.' (ID. 74; Guidebook + Self-help Group attender; newly diagnosed)
People turned to humor as a means of coping with embarrassing symptoms:
'It depends, I mean, obviously ... I would have to, but if I'm in the car with somebody I just say 'Michael, can you open the window right now, 'cos I'm gonna drop one.' (Laughter). I mean, I've done it today, you know. You've just got to laugh about it... A good way to be, you've got to be, haven't you? You've just got to laugh about it 'cos otherwise I'd (run?) myself into the ground getting upset, so you do just make a bit of fun about it. But I do get a bit upset, you know, about my stomach being the way it is, but I just think, well, it could be worse.' (5th Self-Help Group meeting)
Attempts to control symptoms were reported in a way that suggested a sense of precariousness and uncertainty which may have indicated uncertainty about whether what individuals were doing was 'right' or appropriate. The impression given in personal accounts was of the illness having control over the person rather than visa versa.
'Well it sort of rules your life because you can't do the things that you want to do because you're frightened something might happen, like a simple thing like gardening, now I know I love gardening but I know if I'm going to go... because I'm creasing up me stomach and that and then all of a sudden I think Oops and I go and ...' (ID. 191; Guidebook only; diagnosed some time ago)
There was a sense that the nature of the condition was difficult to decipher and solutions, once identified, problematic to enact within the confines of everyday living.
'I just don't understand how you can isolate what it is. I mean, I know I've isolated this lactose just by doing it, going on a milk free diet, but in the myriad of things that happen to you in a day and the myriad of things you eat and drink and the conditions, you know, the conditions you meet each day that you have to deal with, I think it's (very difficult?) to tell what's making you feel ill. (7th Self-Help Group meeting)
Medical contact: the experience of failing tests and failure to acknowledge suffering
When they were recruited into the trial all of the people we interviewed were in contemporary contact with health services for their IBS. The prospect of medical management held out the hope of gaining an official illness label, validating an illness experience and a new avenue of support from previously having just lived with the problem alone:
'I went to the Well Woman Clinic and they knew about it. And she said to me, "You have IBS, irritable bowel syndrome, and we'll try and help you, and there are a lot of people with it now." And that's how I started to know what was wrong with me.' (ID. 198; Guidebook + Self-help Group meeting attender; diagnosed some time ago)
It also meant that people were sent for complex medical tests. Finding out that experienced pain and discomfort was not something life threatening (such as cancer) came as a relief. However, the help and hope which was seemingly expected was not always realized in people's ongoing contact with services.
Respondents felt that medical practitioners frequently did not consider IBS to be as debilitating and problematic as the respondents. This together with what was viewed as a personal failure on a range of tests left people with a sense of futility, delegitimation and hopelessness about their interactions with health services.
'I've had tests at the hospital. They send you things ... tablets, I'm on ... at the moment ... but when you get a really bad attack or you go back to the doctors... they'll send you for more tests, as if it can't be IBS, it's too bad. So you've got to have this test and that test and the last one (the?) other week and they just... to be quite honest they're barbaric, but to put yourself through that and hope there's something wrong with you, then you know, you know that it's bad, because you're trying to say to the specialist, "Tell me there's something wrong. Please, even if it's really bad." Because you don't want it to be IBS, you want it to be something treatable.' (1st Self-Help Group meeting)
GPs were often reported as resorting to construing IBS symptoms as evidence of a problem of psychogenic origin (particularly when tests failed to reveal a pathological cause). This proved problematic for some. Whilst 'stress' as a triggering factor of symptoms was recognized as being relevant at specific times, the notion of stress as a primary cause resulted in confusion and dissonance when it was deployed in a manner which eclipsed the possibility of other causes and downplayed the embodied experience of having to live with IBS on a daily basis. Emphasizing the psychological without engaging with it in therapeutic terms resulted in people's interpretation that what they were suffering from was not a real disease and that it was not serious. The failure to acknowledge the impact of IBS is indicated in the following quote:
'I mean, that's the worst, one of the things that concerned me, is that I know that I've had IBS for years and years and years, I would say that I'm now in my eleventh or twelfth year, but recognition of the fact, and I did see endless consultants and they've always been very, very careful to say to you, you know, "You're not actually gonna die of this, it doesn't lead to cancer, etc, etc." But what they actually fail to tell you is that actually what you've got is a very serious condition that can actually ruin, and quite often does ruin your life. And nobody ever says that to you, you know. And it was only when I recently saw a young consultant at (X) hospital, and he said to me "Some people with severe IBS it can be just like being on kidney dialysis ... kidney dialysis treatment, it can make you feel in the same way as that kind of patient and can have that kind of severity." And that was like some kind of authentication, because you know, you do think that you're, you know, you know that you're very, very ill and yet nobody ever says to you, "yes", because it's not a clinical condition. And I found that recognition the most helpful thing that I've been told throughout my trials and tribulations. (7th Self-Help Group meeting)
The failure to adequately acknowledge the consequences of the illness for people's everyday lives was compounded by the absence of any effective treatment and management options and abandonment.
'I went to see the doctor, he sent me for an endoscope and it wasn't me stomach and then he sent me for a colonoscopy nothing worn there and the specialist just said "high fiber enjoy your life".' (ID 191; Guidebook only; diagnosed some time ago)
Thus the central dilemma left by prior management of IBS seemed to be an absence of control or advice and acknowledgment of suffering. IBS was viewed as an adversary, which had the upper hand rendering feelings of incompetence and incapacity to manage it. Contact with medicine was seen to reinforce these feelings. There was little on offer in the way of treatment and a seeming absence of engagement with existing activities people themselves were undertaking. This was illuminated in accounts of interactions with GPs when offered the IBS guidebook. A number of people expressed the view that they had come to the end of what limited means of management were on offer, and were receptive to a change which rescued them from a medical cul-de-sac as explained by this participant:
'It was when I went back to my GP and said, "Really I want to come off all this, (medication etc) 'cos I don't think this it's helping." "Oh right there's a self-help book (laughing) available, I'll put you on the research programme". So erm..... I think perhaps it's that idea that we want to help ourselves to start with, that's brought us forward. (9th Self-Help Group meeting)
The process of change – self-efficacy and beyond
One of the main findings from the RCT was that although actual symptoms did not change, people perceived them as being less severe (see page 11). Accounts provided by respondents matched the quantitative outcomes identified by the trial. In general, people were planful and anticipated how to control the un-predictive nature of the condition. Regular and frequent references were made to the way in which the individual was better able to 'cope' with and 'control' annoying symptoms. Changes identified included an increase in self-surveillance, monitoring and adjustment to eating routines, together with the avoidance of stressful situations and dietary change:
'I think the main thing I took out of it was more kind of relaxation and stress management, I started to read about that subject rather than irritable bowel itself. Like I said...if I fixate on my symptoms it makes them worse, it's quite a vicious circle really.' (7th Self-Help Group meeting)
'Well I think it's made me actually think about it more really, and I have been... I have been very careful, I've read the book several times and I have watched very carefully what I have eaten and I try not to get into situations where I get stressed out, and I think the combination of that has definitely improved it, I'm not saying it's made it better because I've had a flare-up within the last fortnight, but... and I think I know why I've that flare-up, but the combination of those two things has definitely helped, coupled with the fact that I've started to drink Yakult everyday and I think that's helped as well, so I think that having the booklet and being on the trial has made me think more than I've ever thought about it and I think that's helped.' (ID 131; Guidebook + Self-Help Group attender; diagnosed some time ago)
Whilst the respondents quoted above seemed to have been consciously aware of the psychological means of dealing with matters, there is also an evident emphasis and focus on diet and on tightly managing physical symptoms in people's accounts. This confidence following exposure to the trial seemed to an extent to be rooted in a new found ability to follow self-intuition in managing things the way that people wanted to. The latter seemed to be predicated by an abandonment of medically-orientated ways of managing matters in favor of personal control over symptoms, which was viewed as more reliable. In this sense people seemed to re-construe their previous contact with medicine and process of rejection in order to accept or move on.
'Yeah I don't think you need pills. Right, they give you pills, I don't think you have to have pills every time, any longer, 'cos you would automatically take a pill wouldn't you? Or you can actually have pills all the time can't you, I think? I took that (name of drug) and I didn't like it 'cos I didn't want to take a pill every day for something that might only happen once a month. If I have a really bad attack, if it's just a small one through the day, then I just sit there and breathe it out. I do, you know, just sort of cancel everything out and just go into yourself and I just breathe, like when you're in labor. Just breathe like that and then it usually goes... (ID. 182; Guidebook + Self-Help Group non-attender; diagnosed some time ago)
Of some pertinence to cutting the ties with medicine was a recognition that the setting up of the trial was a form of official acknowledgement and legitimization of their condition:
'...you're in that much of a fog, you don't know what's happening and ... like I came to Doctor C and she said it could be IBS, well the doctor at X had said that too...but it's just a case of, "Well try this, try that", you know for diarrhoea and things like that, "Try these tablets for the pain", but nothing helped, nothing seems to help, it will help for so long and then you seem to get immune to it and it doesn't work no more, so I just thought, "well what's use of keep pestering Doctor C when she doesn't know what to do for me, I don't know what to do for me", and then when I came to see her and she mentioned "Would you go on this trial?", I said, "yes definitely", and ... when I'd seen you, I went home to Stuart and I said, "Do you know I feel right relieved" and he said, "Do you?" and I said, "yes, because at least somebody's there that's trying to get to bottom of it and understand what's happening to you". I feel like somebody's in my corner, fighting for me, and ... I know these things take years and things like that, to find out something definite to help people, but at least you know there's somebody there trying to find something for people.' (ID 191; Guidebook only; diagnosed some time ago)
The relevance of the Guidebook and lay knowledge to the process of change
Both the content and tangibility of the technology (i.e. the guidebook) had relevance for undertaking new self-management activities. The ready availability of the information was important. Some individuals pointed to the content as being important. However, in some respects the content was not seen as novel. A number of respondents reported receiving information previously but this had not been construed as being particularly helpful:
'I was given a sheet when I was first diagnosed in hospital, so ..., and it was literally like, don't eat everything, don't eat anything ... (laughter) just drink water for the rest of your life. And for the first few weeks I did actually try it and it just didn't make a blind bit of difference, so I just started reintroducing things and then seeing what worked and what didn't work.' (1st Self-Help Group meeting)
The style and presentation of information was compared favorably with the didactic presentation of information from within health services. Thus the book reflected back to people the validity of their own ways of managing and confidence in managing IBS. The lay knowledge contained within the book resonated with what people felt that they had learned themselves over a number of years and acted as a key reference point which provided a point of consolidation and positive reflection on what they had previously undertaken.
'Yeah you feel like you're faking the symptoms don't you, you feel like no one knows how bad it feels, and you're the... and they think you're over-reacting? It's horrible, I've had it for four years, nearly exactly four years, I remember waking up and my stomach being bloated and I found that with the book, although I don't think it's helped me manage my symptoms any more than I already was doing, but that's because over four years I've built up the knowledge, because I've been proactive about finding out things, but if I'd been given that book four year ago it would have been a life-saver.' (10th Self-Help Group meeting)
In a number of the narrative accounts there was some suggestion that medicine and lay expertise were inverted. Individuals' own thoughts about their condition and its management which had previously been of questionable legitimacy were given greater certainty and authority.
'I know you shouldn't self-diagnose, you know, but people do go looking for books and things, and I think from that point of view, if somebody's got all sorts of strange symptoms but hasn't been able to work them out, I think it makes them more successful (at treating their IBS)... (10th Self-Help Group meeting)
Not only did 'the book' represent a systematized way of validating lay knowledge but the proximity of the technology to embodied experience meant that it acted as an instantly accessible source of help which fitted with the episodic nature of IBS.
'...the fact that I had the book to go and look at, even though I wasn't really convinced that it was giving me all the answers, it was something that, it was a starting point really each time I got it. I mean I read it in the first place but then, you know, it's like I had a period of time, I must admit I didn't on the first day think, "Oh I must read the book." It was usually after I'd had three or four really bad days. And I thought I'd best try and do something. Maybe the, you know, maybe I've missed something in the book and then read the book. So yes I did use the book. So, yes it was useful. It's useful to have something in writing. Even though I know in my head all the things that might trigger it off' (ID. 338; Guidebook only; relatively newly diagnosed)
'Well I sat down and read it from front to back when I first got it and then ... if I were doing anything or I fancied eating anything, then I went through book to see what anybody else had said about it, you know, and I thought, "they've tried it and it's done so-and-so, I'll try it and see what happens wi' me" and the if it works same way as what the book said, I thought, "right, that's it", I put a little tick at the side of it as if to say you don't try that again.' (ID. 191; Guidebook only; diagnosed some time ago)
It fitted into the jigsaw and changes of everyday life
'...when it does flare-up I get the book out and I read it and it gets things into perspective again, because you do get things out of perspective, I think, when it's bad ... and I think that I'm beginning to come to terms with the fact that one day you can feel perfectly well and the next day... it comes on so suddenly, and suddenly you feel out of control again, and I think by having the book, reading the book, adjusting the diet, trying not to get into stressful situations, it's all helped, it's all helped. (ID 131; Guidebook + Self-Help Group attender; diagnosed some time ago)
Finally the book helped collectivize (that is, share with others) the experience and management of IBS. In the self-help group meetings it was a clear intention of the design that the process of sharing experiences about IBS and self-management would help construct a group narrative which would provide mutual support. In this respect discussions constituted a symbolic bridge in which attempts were made to repair the dissonance which had arisen between bodily experience and contact and messages received from service contact in primary care. In these group meetings it was clear that the collective narratization enabled individuals to share, reconfigure and resolve through group discussion the alienating aspects of IBS and its management which intruded upon life. However, just as importantly, being able to read the IBS guidebook in the privacy of one's own home also represented the opportunity for people to identify with other people's experiences. The focus on other people's suffering seemed to initiate a form of projected identification in the validation of experience and in efforts made to control IBS.
'A lot of the comments that were made were comments that I could have made myself, I know everybody's different and everybody's symptoms are different and everybody needs different treatment, but I think the comments are common to lots of people with IBS, you all say the same things, so that helped, yes that helped.' (ID 131; Guidebook + Self-Help Group attender; diagnosed some time ago)
A further dimension of the collective use of the book was in providing the means to share knowledge with others and thus permitted a stepping out of an exclusive illness role into one which was of assistance to others.
'...because, you know, everybody you talk to, I mean we have a friend haven't we... she's the opposite way, she's constipated and that's who I passed the book on to, for her to read.' (ID. 191; Guidebook only; diagnosed some time ago)
'It's handy having the booklet because my boyfriend read it and it really helped him, and now he says, "Are you sure you want to eat that? It's got this in", so it's... that's done all my talking for me really, it's a mutual perspective.' (10th Self-Help Group meeting)