The journey traversed from pre-diagnosis, to diagnosis, to treatment and living with side effects and symptoms, is different for every individual with a chronic illness. Yet, as our study demonstrates, important and recurrent themes emerge when individuals with chronic GI conditions describe their illness journeys in the company of others who share similar experiences. These focus groups reveal important insights about the impact of illness on their lives. Namely, these groups provided a safe forum in which individuals with chronic GI conditions could raise and openly discuss concerns at length and without time constraints. Given the often taboo topics discussed, participants seemed grateful for the opportunity to 'let it all out' among others that could relate. As one participant put it:
"It's great to meet other people who have gone through what I have gone through. You know what I mean? I'm not alone. Yes you've got people online, but actually to physically see somebody in a room, it makes me feel like, 'God, I'm okay.'"
The themes discussed above have several overarching implications for clinicians. Threaded throughout our findings are the opposing notions of uncertainty and control. Trying to balance uncertainty about what the future holds, what exactly their diagnosis is, how to manage their symptoms, which medication to take, and which foods to avoid, with the desire to maintain some semblance of a "normal" daily life were challenges articulated by our participants in a variety of ways. Each of the themes we describe evolved from participants talking about how they struggle with feelings of uncertainty and the strategies they develop to control uncertainty. We interpreted these strategies as coping mechanisms that enabled a sense of control or empowerment. Having a cohesive explanation, a story for one's illness, is a critical aspect of living with chronic GI illness.
Medication selection is central to how many of our participants attempt to control their symptoms and flare-ups. The pros and cons, the possible harms and predicted benefits, are topics that some of our participants struggled with physically as well as intellectually when thinking about whether to take the drug or even continue with it. Participants hoped that the physical and emotional burdens of living with a chronic GI condition will be alleviated with medications. However, there appears to be two sides of the coin when it comes to medication--one offering potential benefit, perhaps the promise of a cure, the other, harm. Participants were cognizant of this tension and spoke of their experiences with medication using literary metaphors such as "Pandora's box", or gambling analogies, such as "Russian roulette" and "crapshoot." This in-depth examination of participants' voices reminds us that medications often can create unsettling uncertainties and significant financial burdens that clinicians may not always fully appreciate as they work to help patients manage their illness.
Hyper-vigilance about food and diet was also evident among our study participants. As food is often the center of social encounters-from parties, to dinner with family, to work-related eating gatherings-avoidance and adaption strategies in the context of meals were critical for individuals with chronic GI conditions to "fit in" and actively participate socially. This, along with "bathroom mapping," highlights how hyper-vigilance about one's personal environment creates social tensions for individuals with chronic GI illness. On the one hand, religiously-followed "food rituals" help to stabilize their condition, yet on the other, they can greatly conflict with IBS/IBD patients' attempts to live a normal life.
Prior studies of patients with IBS have helped to identify factors that affect GI patients' quality of life. Bertram et al 2001 found intense frustration and isolation among his patients [22
]. Like participants in our study, they were commonly frustrated by an inability to control symptoms, the need to immediately access toilet facilities, the struggle to understand what triggered an episode, and having to withdraw from social activities. Nearly ten years later, Drossman et al found that IBS patients described uncertainty of symptom trigger and unpredictability of symptom occurrence, loss of freedom, and feelings of stigma and embarrassment associated with their disease. Many of these patients felt misunderstood by friends, family, and health care providers [23
]. Similar themes feature prominently in "I am Doing the Best That I Can Do!", a series of publications that tells the personal stories of six IBS and two UC female patients [24
]. Our data build upon these earlier findings by articulating both positive as well as negative dimensions of patient experiences from a geographically broad and diagnostically diverse group. In addition, the many burdens of living with IBD/IBS may not be immediately evident to clinicians-perhaps because of the stigma and personal impact we describe. We posit that structuring health care encounters in which a patient-clinician relationship that supports meaningful expression of personal experiences of disease could lead to better symptom management for patients with chronic disease.
This study has several limitations. Although we strove to recruit members from under-represented racial and ethnic groups, participants were largely of European descent. These factors limit the generalizability of our findings, as does our mode of data collection. Recognizing the limits of focus group methodology, we chose this approach because it does enable the emergence of topics and themes that may not otherwise come out. No one research team member moderated all of the focus groups, which may have limited uniformity in how questions were posed. However, because our findings span all 22 focus group discussions, we view this as strong support for our conclusions.
Since the lived experience themes emerged from the data during analysis and were not a main aim of the parent study, we did not transcribe audio recordings such that GI condition of individual participants was noted when each spoke. What is interesting is that the reflections on the lived experience were not remarkably variant, even while the diagnoses in any given focus group may have been. Regardless of the self-reported condition, our participants shared similar stories about living with a chronic GI disorder. We acknowledge it as a methodological limitation, but also believe it is, in itself, an interesting finding.
Finally, the original objective of our focus groups was to assess how individuals with IBD or IBS view probiotics, not to examine their disease experience. Operating within the framework of this main objective may have limited opportunities for further follow-up on some discussion points that were raised. Nevertheless, we believe that the fact that stories about illness experiences arose even in the context of probiotics supports our conclusions that the encounters we heard about living with IBD or IBS are very prominent in the daily lives of these individuals. Future studies may benefit from exploring differences across different chronic GI conditions.
The themes we have identified and described-issues of identity in chronic GI illness, medication as a double-edged sword, and survival strategies including hyper-vigilance about one's diet and bathroom mapping-highlight several major determinants affecting the quality of life experienced by persons with chronic GI disease. Because these matters can be difficult or uncomfortable to talk about during routine clinic visits (and may, as such, be understated in such settings), the data we report offer important insights into how individuals with chronic GI illness navigate daily life. Our findings, drawn from three large academic medical centers, indicate a need to expand and refresh a truly patient-centered appreciation of the full illness experience for patients with GI illness.