Crystallization
Three overriding themes emerged from the focus groups responses: frustration, isolation, and a search for a niche in the health/sick role continuum Table 1.
Frustration. IBS sufferers displayed a sense of great frustration with the lack of control over their illness and daily lives. The unpredictability of IBS exacerbations, the severity of symptoms and the lack of understanding and empathy for their illness by family, coworkers, and physicians lead to feelings of disappointment, anger and frustration. Participants said: “It is triggered by anything, everything, nothing. It makes no sense”; “There is no control and people don’t understand that…no one can”; “All of a sudden it hits you. I’m afraid sometimes to get up and move”; “I haven’t noticed a pattern, and it’s frustrating”; “I think that part of the stress factor is the frustration of trying to figure out what’s coming next.”
The lack of an adequate medical explanation for IBS was frustrating for most, even though there was relief at the understanding that they did not have a serious medical disease. For some, the search for a cause of their IBS continued, and they explained their illness using life events that make sense for them. Participants viewed the illness as severe and greatly affecting their lives, and they believed that physicians did not give credence to the fact that they were ill. This perceived discrepancy caused them to see their physicians as unhelpful in dealing with IBS. One patient said: “There are medical people who think that it’s all in our head, and if they can’t come up with a diagnosis, it’s a wastebasket diagnosis.”
Frustration becomes a downward spiral triggering new episodes of symptoms leading to greater frustration and isolation. As one participant put it: “For me, my home…is not a very comfortable place, because my dad doesn’t understand this, and some of my family members don’t understand this.”
Isolation. The sense of isolation that participants felt was pervasive throughout the groups. Most felt apart from others, alone in their suffering, perceiving their symptoms as embarrassing and being unable or unwilling to discuss them with friends, families, and coworkers. Through group discussion, they were often surprised to learn of others’ similar episodes with IBS and felt an affirmation of their IBS experiences that they had not before experienced. One patient said: “I thought I was the only one in the whole world.”
Social events were difficult because of the perceived possibility of triggering an IBS episode and were often avoided because of frequent bathroom use, embarrassing occurrences of gas, abdominal pain, diarrhea, and even incontinence of stool. Isolation is further increased by the avoidance of social situations. Participants said: “I can’t go out to eat because I’m not sure what’s going to happen. I can’t go to family functions”; “You dread when somebody asks you to go somewhere, because you are afraid that you’re going to have a problem, and it’s going to affect everybody that you’re with”; “My family is always blaming me that I plan to have us not be able to go on vacation.”
Isolation in the workplace can also be enhanced when an IBS sufferer takes frequent bathroom breaks or must miss work because of abdominal pain. Coworkers’ unsympathetic responses toward the problem and frequent trips to the toilet increase the IBS suffers’ solitude. A participant said: “They (coworkers) complain a lot about me: ‘You’re just trying to get out of work’…that’s how they started teasing me, thinking I was just trying to skip out of work.”
Search for a niche. Participants viewed themselves as suffering from a chronic and sometimes debilitating illness. However, the message they received from the medical community was that there was nothing wrong with them. Nevertheless, the impact on daily life was considerable, and patients with IBS appeared to struggle to determine their place on the illness/wellness continuum. One patient said: “It is a waste of time to seek (help from a physician), because they say its just all in my head…they don’t want to deal with it.”
Even when feeling well, participants were concerned about the timing of their next episode. Thus, a great deal of energy was spent to avoid being ill. Participants said: “I try to get things stimulated in the morning so I can get it over with. It takes about an hour for the whole process because of the residual cramps,” and “I try to avoid certain foods.”
Discussion
These focus group volunteers were very willing to discuss their IBS symptoms and the ways their lives were affected by this illness. It seemed as if many were relieved to finally be able to discuss their problems and symptoms and to hear how others with similar difficulties fared. Quite a few were encouraged that their individual experiences with IBS problems paled in light of others’ difficulties with IBS.