Breaking the Silence
by Nina Pan
This article was originally published in April 2011 as a guest post on the blog of Disruptive Women in Health Care, an organization founded by Robin Strongin in 2009 to “serve as a platform for provocative ideas, thoughts, and solutions in the health sphere.” According to Health IT News, HIMSS Media Women in Health Care acquired Disruptive Women in Health Care in late 2017. As of early 2018, it appears that the Disruptive Women in Health Care domain has been shut down, so the text of the post has been reproduced here. Thank you to those involved in Disruptive Women in Health Care who gave the guest post opportunity and early publicity to an unknown, fledgling, grassroots IBS Impact on the basis of an unsolicited email. I am grateful.
April is Irritable Bowel Syndrome Awareness Month. IBS is the most common functional gastrointestinal disorder. Its hallmark symptoms are chronic abdominal discomfort or pain and altered form and frequency of stools in the absence of certain “red flags.” By conservative estimates, IBS affects 10-15% of the population or 30-45 million people of every age and ethnicity in the U.S. alone, although it is found worldwide. Two-thirds of people with IBS are women or girls.
Misperceptions about IBS abound. Because obvious abnormalities cannot be seen in the digestive tract from currently available clinical tests, for decades, IBS was dismissed by the medical profession as “all in the head.” Even today, the general public’s and media’s awareness of IBS is often vague. Among the stereotypes are that IBS is caused by poor lifestyle habits and stresses of modern life, that IBS is a catchall diagnosis for any digestive complaint that can’t otherwise be classified, and that, because IBS is not life threatening, it is not worthy of “serious” attention.
None of these misperceptions is true. In the last decade or two, research has shown that IBS is a complex disorder that appears to result from many factors, including dysregulation of the brain-gut axis and visceral hypersensitivity. It is no longer considered a diagnosis of exclusion, but one that can be made with high accuracy using the symptom-based Rome criteria. Much about IBS is still poorly understood scientifically, but it is very real. Diet and stress have been shown to affect symptoms to varying extents in different individuals, but those factors do not “cause” IBS. While many people with IBS have mild or sporadic symptoms that can be adequately helped by existing resources, for a large minority, IBS can significantly disrupt many aspects of quality of life.
Following the abrupt onset of my own IBS in late 2007, I received an almost immediate diagnosis and proactively began diligent self-education and treatment. Still, within a year or so, I had nearly exhausted all reputable conventional and complementary options with partial but inadequate relief. As an educator and experienced disability advocate in a major metropolitan area, I was disturbed at how difficult it was for me and others to find basic resources those with other common health conditions can take for granted. Despite the high prevalence of functional GI disorders, the number of expert clinicians and researchers in this field is small, and not all medical providers in local communities have up to date knowledge of IBS. There are few community education or peer networking programs or support groups. While there are now organizations, books and mostly anonymous Internet forums that did not exist 20 years ago, they are hardly household names, and it takes time, persistence and savvy to separate the reputable resources from the many that are outdated, inaccurate or outright quacks. Conditions such as fibromyalgia, chronic fatigue syndrome, endometriosis, interstitial cystitis, vulvodynia and temporomandibular disorders coexist in people with IBS at a higher rate than in the general population. Also, some people, including me, experience apparently overlapping symptoms without meeting the criteria for additional diagnoses. These extra symptoms add to the difficulties of IBS management, yet are not frequently addressed by current resources and interventions. Research for IBS in general is underfunded, and tissue banks in which affected people can participate are years away. Many people with IBS report difficulties with schools and employers, and IBS is often not recognized for disability benefits for those impaired enough to need them. Most of all, I was astounded to learn that it is not unusual for many people with significant unmet needs from IBS to stay “in the closet ” for years, too embarrassed to discuss is with others, to seek help or to organize consistently as a community in order to press for sorely needed progress on these issues or any others. What did one do when despite one’s best efforts, “managing” IBS was simply not enough?
All this led, in mid-2010, to the genesis of IBS Impact, a Yahoo Group listserv and website specifically for those with IBS, as well as family and friends and supportive professionals. While we look to reputable and established sources for scientific guidance and constructive collaboration where interests intersect, we are intentionally grassroots, independent, and person-centered. We hope to build a peer community to encourage and mentor others with IBS to come out of the closet and speak in our own voices with the honesty and dignity of our lived experiences. IBS Impact is an opportunity for people of diverse backgrounds to work together actively to move beyond day to day management and address the broader issues of change. We are very small at the moment, and still finding our group voice, but with the support of like-minded individuals and groups, we hope to grow and become active, engaged participants in open dialogue. We welcome readers to join us and commit to catalyzing changes that will benefit all with IBS.
Nina Pan is a longtime educator and disability advocate and, more recently, a person with IBS and the founder of IBS Impact. (http://www.ibsimpact.com)
Posted: March 2018