Shedding the IBS Stigma

By Lin Chang, MD

I’ve never forgotten the story.  It came from a man in a focus group I once conducted on irritable bowel syndrome.  The man, early 40s, was explaining how IBS impacted his social life.  If he attended a party with friends on the weekend, the man wouldn’t eat or drink anything for fear that it would cause a symptom flare.  No sliders, no cocktails, not a single beer with his buddies.  Sure, his friends noticed.  But he’d rather people suspect he was a recovering alcoholic than have to explain that he had IBS.

The story underscores several realities about IBS.  First, it’s not “just” a women’s disease.  As with migraine and fibromyalgia and other chronic pain conditions, skeptics used to wave IBS off as a condition seen in neurotic women.  That’s simply not true.

Second, the stigma is palpable.  IBS is one of the most common functional GI disorders.  After widespread patient and community education efforts, we now can say “IBS” and have others know what we mean.  However, some patients remain skeptical that IBS explains their symptoms, or they don’t want others to know they have it.  

In fairness, it’s a lot to bear.  IBS is a chronic condition with fluctuating and unpredictable symptoms that can be difficult to manage. People with IBS not only suffer embarrassing and disruptive bowel symptoms such as diarrhea or constipation; they also have chronic abdominal pain.  Many people experience overlapping conditions such as depression, anxiety, chronic fatigue syndrome or sleep disorders.  Health care providers’ challenge is sorting through the many symptoms to help patients identify patterns and triggers, and to chart a path forward.  

The causes of IBS are complex.  Genetic factors play a role.  It often runs in families, and twin studies show that when one identical twin has IBS, the likelihood that the other will have it too is higher than with a non-identical twin.

For me, an intriguing aspect has always been the environmental component.  People who undergo adversity in childhood, for example, are more likely to develop a chronic disease.  That’s any chronic disease, including diabetes, heart disease, or – yes – IBS.  These could be children who were abused, who were neglected in their early lives or whose parents struggled with mental illness. 

This connection between emotional and physical health is compelling.  Even those who doubt it often discover, upon closer inspection, that they’ve experienced it on some level in their own life.  Maybe it’s the break-up that left you so devastated you dropped 15 pounds.  Maybe it’s the death of a parent whose loss led you to develop anxiety and to experience sleep disruptions. Poor sleep can, in turn, increase physical symptoms.

IBS is no different.  So when patients come to me, I help them identify their triggers, and I advise them that changing two major factors – nutrition and lifestyle – can be helpful.  Medication can help as well, such as FDA-approved medications for IBS and neuromodulators, as they play an important role in patients’ treatment, particularly for patients with moderate-to-severe symptoms.  Medication can also target the altered communication between the brain and the gut that occurs in IBS, and the nerves that transmit symptoms, reduce sensitivity and normalize gut movement. Behavioral treatment approaches, including cognitive behavioral therapy, hypnotherapy, mindfulness meditation, have also been shown to be effective. 

But first, patients must see a health care provider.  People must realize that their GI symptoms and chronic abdominal pain may not be solely due to dairy and gluten intolerance, as magazines, the internet or family members may suggest. Although diet may play a contributing role in IBS symptoms, this is a multifactorial condition and can benefit from limited diagnostic tests and treatment including education, reassurance, diet, medication and behavioral treatment. Seeing a health care provider can help effectively guide management. One key goal is to empower patients to learn to manage their symptoms and have a greater sense of control over them.

Making way for treatment means continuing to raise awareness about the disease.  But it also means shedding the stigma that buries patients in shame.  We all know that stress, life experiences and environment can trigger physical symptoms.  Let’s free patients with IBS to get the treatment – and the support – that they need.

Lin Chang, MD, is a board-certified gastroenterologist and a fellow of the American Gastroenterological Association, a member organization of the Biologics Prescribers Collaborative. 


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