Recently IBS Impact was contacted by a communications entity seeking perspectives from IBS sites and organizations for a possible education venture. This appeared to be an opportunity to share some thoughts, increase our reach and encourage more good quality awareness, and we were glad to be asked. The relatively open ended discussion ranged from personal experiences to the general themes of diagnosis, IBS education or lack thereof, doctors, stigma, relationships with one’s family, friends and colleagues, the wide variety of information and resources on IBS ranging from state of the science academic research and organizations to outdated statistics to outright quack cure scams and everything in between, and the general tendency of people with IBS not to be as active as some other health communities in publicly identifying themselves or organizing for advocacy. All of these issues and more have been discussed on this blog, the IBS Impact main site and social media at various times in the past. But one question was more difficult to answer. Paraphrased,”What would an average person with IBS want in an education effort?”
The answer, in this case, seemed to be, “There is no average person with IBS.” IBS crosses all demographic boundaries, anywhere from 30 million to almost 60 million people in the United States alone, and, according to a tweet by Olafur Palsson, PsyD of the University of North Carolina Center for Functional GI and Motility Disorders sometime back, perhaps as many as half a billion people worldwide on every continent. Researchers know that statistically, in most countries, about two-thirds of people with IBS are female and one-third male, a discrepancy thought to stem from both physiological factors, such as hormones, and social factors, such as access to or willingness to seek medical care, but in a few countries, the statistics skew more prominently toward men. All ages are affected, from small children to senior citizens, with varying ages of onset as well, all ethnic groups, all socioeconomic backgrounds. Some of us are in the diarrhea-predominant subtype, some constipation-predominant, some mixed, some pain-predominant, some not easily subtyped. As discussed in a January 10 2012 post, a Rome Foundation task force last estimated that about 40% have mild or sporadic symptoms, 35% moderate symptoms and 25% severe symptoms. Anecdotally, some of us had very gradual symptom onset over a period of months or years, while for others it was abrupt, in a matter of hours or days. Some of us know that the onset of our IBS appears to have been following infection, food poisoning, abdominal surgery, or that there is a family history of IBS. Most have no idea where it came from. Some seek medical help immediately; some wait years, embarrassed, hoping things will go away. Some who do seek care find competent, knowledgeable, empathetic professionals quickly, others not so much. Some people appear to be helped by various specific treatment interventions, while those same approaches appear to do nothing at all for others, even if, on the surface, the individuals have similar symptom patterns. Some people can easily identify and remove symptom triggers. Others can’t and muddle through the best they can. Enter any large IBS forum and one will likely find members who were diagnosed yesterday, fifty years ago and everything in between. Some people with IBS are very open about it with family, friends, coworkers and classmates. Many, perhaps most, are not. A small minority are actively involved in awareness or advocacy. Most, for a variety of reasons, are not. Some are extremely knowledgeable about the current science of IBS and available resources. Many, sometimes even years after diagnosis, are not. Given all that, could there realistically be an average opinion on anything related to IBS? Any large support forum suggests otherwise.
As a result, reaching a critical mass of people with IBS with single perfect message for most of them is not easy for any website, organization, research center or other entity. Getting us to respond to an educational event, clinical trial opportunity, survey, charitable solicitation or call to advocacy action takes more work, more time, more patience and more luck than many people who are new to the IBS community realize. If successful, one is not necessarily reaching an “average person with IBS,” but whomever happens to be on a particular website or social media that day who is in the physical condition and mood to respond. One could easily be daunted and give up, and many IBS bloggers and websites do when IBS symptoms lessen, perhaps, and the impulse to go on with life and leave behind IBS as much as possible understandably takes over.
But the IBS community and the public need to read and hear those diverse experiences and perspectives. Those of us with quality information and resources to share should continue to reach whomever we can, even if it is a small segment of a huge potential audience. We should encourage others who wish to do the same, and not get too caught up in minor political or philosophical differences, for no one individual or organization or website or forum can do this alone. Researchers and other entities who wish to help people with IBS should take note of the vast differences in experiences in our community, and work toward parity in the availability of good quality IBS education, treatment and services. Finally, the general public, families, friends, colleagues and classmates, notice the huge numbers of people with IBS. Notice the demographic diversity. We are among you, whether you are aware of it or not. Like many other groups for other health conditions, IBSers generally do not want pity, but we can use and appreciate true empathy, concrete support and opportunities to continue as full and productive lives as each of us can with IBS.