Why Are Community-Based Education and Support for IBS So Hard to Find?

In many communities, at least in the United States, it is very common for a person recently diagnosed with, for example, diabetes or kidney disease, to be promptly referred to some sort of seminar or ongoing class designed to educate the person on his or her medical condition and appropriate management. Very often, these educational opportunities include some form of a support group. In other locations, some hospitals or clinics have nurses or other health educators available for affected people to call for quick questions between follow-up visits to one’s physician. That sort of thing seems unheard of for irritable bowel syndrome, even in major metropolitan areas that are rich with health and social service organizations of many sorts, even though diabetes and kidney disease, as prevalent as they are, are each individually less so than IBS.

One might say that diabetes and kidney disease are life-threatening conditions, each with many potentially serious complications if left improperly managed, while IBS is not. However, Down syndrome is not such a condition, and in that community, following the lead of one local DS parent group several decades ago, many DS parent groups nationwide have a service whereby experienced parent volunteers are available on request to meet with a new family for peer support and quality information mere hours after the birth or prenatal diagnosis. For many common disabilities and health conditions, support and information in one’s own town or city or nearby local areas can be found easily on the Internet or by referral from one’s health care facility or a local human service agency. Publicity of such resources in the media or community newsletters and electronic listservs often indirectly increases public awareness of a given disability or medical condition as well. These are good opportunities and often lead to better outcomes for affected people and families.

This availability of local, community-based programs is not generally the case for irritable bowel syndrome. There are many support forums on the Internet, some long established for years, some newer, many using anonymous user names, some with real names.  These play an important role for individuals with IBS and the IBS community as a whole, giving people with IBS access to peers all over the world. Several people involved with IBS Impact, in the present or past, have been founders or moderators of various such forums. As for evidence-based IBS education, as often publicized on this blog, the University of North Carolina Center for Functional GI and Motility Disorders, in particular, has been a pioneer in creating opportunities for state of the science patient education through its past online patient symposia, “Expert Updates” and past chat series and downloadable handouts that reach people in U.S. states and countries far beyond its Chapel Hill, North Carolina campus. This is all urgently needed and appreciated. But even two decades after increasingly widespread use of the Internet, not everyone is comfortable with technology or with such public forums with strangers, or may have other reasons for desiring or responding better to in-person education and support.

Why are Internet resources the only option in most cases? Why do the same basic questions and misconceptions about IBS come up repeatedly, sometimes daily or several times a day, not necessarily from people who have recently been diagnosed, but also from those who have already lived with diagnosed IBS for several years? Have they all been provided with excellent information from their health care providers, but simply do not have the willingness or capacity to listen and learn? Perhaps this is true for a subset, but that cannot be the case for all people with IBS who frequent one or more of these online support forums. Why are people with IBS so frequently left to their own devices in front of a computer, desperately typing into search engines, trying to sort through what is reputable and what is quackery, and asking questions of mostly layperson strangers, sometimes anonymous ones, on the other side of cyberspace when some of these answers clearly are so specific to the person’s individual situation or technical enough that they should come from the person’s own physician? Evidence-based research of all sorts shows that overall, IBS is astonishingly hard on the quality of life of people with significant IBS, on families and on society as affected people commonly go from health care provider to health care provider searching for answers, or deal with decreased productivity at work or school. Evidence also shows that those people with IBS who have good doctor-patient relationships tend to have better outcomes. Logically, it would be in everyone’s interests if people with IBS and the family members and friends who support them in their daily life were encouraged and given access to convenient, quality resources as soon as possible.

More than one person with IBS, when requesting a referral from a health care provider, human service professional or support group clearinghouse has been met with the bemused response, “There isn’t one.” or “Nobody else has ever asked.” Really? Anyone who has been in the IBS community for some time is aware that many people with severe IBS are afraid to go out unless absolutely necessary because of unpredictable and embarrassing symptom flare-ups. That also may be part of the answer, but people with inflammatory bowel disease and/or ostomy devices share some of the same concerns and it’s generally much easier to find local, in-person support groups for either of those conditions, which are also statistically much less common than IBS. Professionals and people with IBS  also often speak of the stigma of IBS that leads many people with IBS to delay or avoid asking for help altogether. Still, some of that increased stigma appears to be perception rather than reality, as people with similarly poorly understood, invisible chronic pain conditions or mental illness often have very similar complaints about how they perceive themselves to be regarded by others, and there are generally support groups for many of those conditions. Clearly, people with IBS need education and support as they flood the Internet forums by the thousands, with several new requests for membership every few hours in one busy multinational group.

So why, really, do we not have plentiful support and evidence-based education near our own homes, schools, workplaces, health care facilities, or community gathering places offered routinely from the moment of diagnosis or upon request?  Readers are invited to comment.  People with IBS, is there a support group or IBS education program near you? If not, have you asked for one? If you had a choice, would you prefer a community-based option or the Internet and why? IBS professionals and peer facilitators with IBS, do you have or have you tried local education and support? What has made any efforts succeed or fail, and what can we do as a community to begin to change the status quo in this respect? IBS Impact supports a range of options so that different individuals can choose the means that best fit their personal needs and desires at any given time.

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