Between ten and fifteen percent of the population suffers from IBS, experiencing chronic symptoms like bloating, cramping, constipation, diarrhea, and recurring abdominal pain.
A 2015 survey by the American Gastroenterological Association (AGA) found that 67 percent of people with IBS waited more than a year to see a doctor after experiencing symptoms, while 11 percent waited a decade or more.
Why aren’t more people seeking help? In light of IBS Awareness Month, let’s take a look at some of the factors that prevent IBS sufferers from seeking treatment.
The poo taboo
The first reason is obvious: gut symptoms aren’t things most people discuss with their friends over lunch. Digestive disorders are surrounded by a social stigma that campaigns to break the “poo taboo” have done little to dislodge. The same AGA survey cited above found that 48 percent of IBS sufferers said their disease made them “self-conscious.” Thirty-nine percent said it made them “embarrassed.”
That embarrassment can make it hard for IBS sufferers to confide in friends or loved ones about their condition, much less a stranger in a doctor’s coat. In an article in the Atlantic, writer Anne McGovern wrote about her struggles with being open about the disease. “Like me, many people with IBS are too embarrassed to talk openly about it,” she writes. “They also try to shove their lives into a neat little box in hopes of keeping their disorder from bothering anybody else.”
Trivialization hinders treatment
Unfortunately, the stigma isn’t all in patients’ heads. A 2017 study of non-IBS sufferers’ attitudes toward digestive diseases found that IBS was “at comparable risk for stigmatization as HIV and obesity,” both highly stigmatized conditions. More surprisingly, the researchers found that IBS was more highly stigmatized than irritable bowel diseases (IBD) like Crohn’s and ulcerative colitis, which also have “embarrassing” bowel-related symptoms.
Why this difference? The researchers hypothesize that it is rooted in the fact that IBS is a functional somatic syndrome—meaning that it has ambiguous, ill-defined symptoms for which it’s hard to pinpoint an exact cause. Other functional somatic syndromes include tension headaches, chronic fatigue syndrome, and lower back pain. Patients with functional somatic syndromes may have difficulty getting other people to take their symptoms seriously and may suffer from the incorrect perception that they are exaggerating their pain.
But those with IBS can sometimes be their own worst enemy: trivializing their symptoms and not taking their condition seriously. Our culture teaches people to think of digestive disorders as psychosomatic, which leads many to brush off their IBS symptoms as mere expressions of stress or anxiety. This can be one reason it takes the majority of sufferers so long to see a doctor about their symptoms.
Doctors can be a part of the problem, too
However, for those who do seek treatment, doctors may also contribute to the perception that their symptoms are trivial. In a 2017 survey of more than 500 patients with IBS, 32 percent agreed with the statement “healthcare professionals don’t take IBS seriously.”
“When it’s bad it can be debilitating; you can’t leave your house, you’re in pain, and it can be very embarrassing,” said one patient quoted in a report commissioned by the Gastrointestinal Society and Allergan. “And my doctor has basically said ‘sorry, there is nothing I can do.’ Sometimes I am made to feel like I am making it up.” It may take years for an IBS sufferer to receive a diagnosis, even after multiple appointments with healthcare providers.
To be fair, IBS can be frustrating to clinicians. Its vague symptoms make it difficult to diagnose—isn’t everyone bloated and gassy sometimes?—and there’s no pill or other easy treatment to prescribe. Unlike its cousin IBD, IBS is unlikely to develop into a life-threatening issue like colon cancer, which also may put it at the bottom of doctors’ priority lists. However, that’s no excuse for ignoring a problem that causes sufferers to restrict personal and professional activities an estimated 73 days out of each year.
A path to de-stigmatizing IBS
IBS is a relatively common condition with serious effects on patients’ quality of life and well-being. Yet often doctors, friends and family, and even patients themselves don’t take its symptoms seriously, leading to a stigma that keeps IBS sufferers from getting the help they need. This IBS Awareness Month, we’re doing what we can to spread the word that IBS symptoms are worthy of serious attention—and that the “poo taboo” shouldn’t keep sufferers from speaking up.
Click here to learn more about how uBiome’s clinical SmartGut test can help you and your healthcare provider learn more about IBS symptoms.