On various IBS support forums, the question frequently arises of whom or how or if to tell about our condition. For some people, the onset or course of IBS is so sudden, severe and/or debilitating that hiding it is not a viable choice. For others, the decision is not as simple, and there is a range of ways that individuals deal with it. Some people are very open with almost everyone. Conversely, there are those who have had severe symptoms of apparent IBS for years, but have rarely or never mentioned anything to anyone, including immediate relatives and doctors.
These are very personal decisions based on individual circumstances that may change over time. Some people are more private than others and certain situations may suggest the need for more discretion. Outside of an IBS support forum, most people probably would not find it necessary to disclose to random strangers whom they might never encounter again, nor casual personal or business acquaintances. Although in the U.S., Section 504 of the Rehabilitation Act and the Americans with Disabilities Amendments Act broadly cover IBS for the purposes of education or employment discrimination, and disability laws in some other countries or provinces may apply to their citizens with IBS, some people still find disclosing to teachers, classmates, or coworkers to be a sensitive issue.
Many of us with IBS who have told others about it have encountered some less than ideal reactions. On the relatively benign end of the spectrum, it might be well-meaning people not knowing what to say or do or appearing to become bored with us mentioning IBS, They may offer superficial comments about some intervention we have heard about many times before and perhaps tried and failed, or about another acquaintance with IBS who is doing just fine while we are struggling. On the other end, other IBSers anecdotally report enduring blatant and repeated hostility and ignorance from people close to them. Eventually, some people with IBS may tire of attempting to educate others in addition to coping with symptoms, as well as the usual demands of daily life. Some people with IBS, faced with negativity or rejection, decide that if others cannot be supportive, they don’t need those relationships. Other IBSers stop discussing IBS at all, or never start, going out of their way to conceal it.
This dynamic has been observed frequently on various online forums in the context of questions about avoiding food triggers at family or social occasions. Common advice from various fellow IBSers is to say, “I’m not hungry.” “I ate before.” or “I’m allergic to X.” “I’m on a diet.”
Surprisingly much less often, the suggestion is, “I have IBS,” or for those who prefer to be more general but still truthful, “I have sensitive digestion” or “I can’t eat that for medical reasons.”
While small white lies are somewhat understandable on an individual level, they become problematic when, for millions of IBSers, the default reaction is to minimize and obscure the real struggles of severe IBS to the point of making our community nearly invisible to the general public. The IBS Impact founder regularly encounters highly educated, generally socially aware people in various fields who have never heard of IBS.
Those of us in developed countries live in an era when food restrictions— whether for specific medical conditions like diabetes, celiac disease, life threatening food allergies, kidney failure, hypertension, high cholesterol, or gastroesophageal reflux, or for religious tenets or simply as lifestyle choices– are extremely common, and where a range of specialty food products, stores, websites and books are increasingly available. In some states in the U.S., every restaurant or eating establishment, such as a school or employee cafeteria, is legally required to post or include on menus a statement inviting those with food allergies or restrictions to disclose them to the staff. In this context, is IBS so different as to be unmentionable?
Many people with IBS complain that those without IBS don’t understand. The question is if we, as individuals who are affected, don’t tell them anything, how will they learn to understand? As some IBSers have found, the effort of hiding IBS and wondering who knows what may actually exacerbate IBS for those who find their symptoms highly affected by stress.
Other IBSers say they wish family and friends would seek out information on IBS and educate themselves. Some concerned relatives and friends do just that, and it is positive to encourage more to do so. However, many available sources are outdated, scientifically inaccurate or reinforce popular misconceptions. As each person with IBS has a unique experience, even reputable general data may or may not apply to a specific individual’s particular situation. If it is difficult enough for IBSers and some professionals, who have a stake in good information, to separate the reputable resources from the questionable, without our proactive guidance, what can we reasonably expect of people without IBS who don’t?
Being good self-advocates implies trusting enough in the truth of our own experiences and the scientific facts to be honest with those around us when an appropriate situation presents itself. Some people will be receptive. Some will not, but may learn in time. Being a self-advocate can be slow, it can take work, and some IBSers have more patience and resources for that than others. But sometimes we can be surprised by the receptivity and kindness of those around us—or how many of them have IBS or a loved one with IBS themselves.
The IBS Impact main website has a section of original articles for IBSers to share with family and friends, written just for our site by people who support IBS awareness and advocacy. Visitors also may browse other pages of our site and those of various reputable resources we have linked. We welcome new submissions and suggestions. Simply use the contact links on the home page.