Decoding Stigma in IBS - The Importance of Story Telling

As a dietitian specializing in functional gut disorders, I work with IBS patients every day. It’s unfortunate that many of them come in uncertain, discouraged, and frustrated.

It is no secret that being diagnosed with IBS can feel sketchy. For many people, being diagnosed with IBS can feel like a catchall statement, rather than a definite confirmation. It often comes after ruling out numerous other issues such as celiac disease, Crohn’s disease, colitis, or a viral infection. It’s confusing when biopsies and blood work ‘come back clean’ and all you’re left with is the feeling that the IBS diagnosis was the only way they could explain what was going on inside you.

Many times, my patients are sent on their way with little to no information about nutrition or perhaps a very broad statement to eat more fibre and drink more water. Even the best intentioned doctors may say ‘try a low FODMAP diet’ – but without guidance it can not only seem impossible – but actually be harmful to your gut health.

Research now shows that extensive testing is not necessary to diagnose most IBS patients.⁴ We now have better diagnostic criteria based on patient symptoms instead of exclusion of other conditions – because despite not FULLY understanding how IBS develops, we know it’s a REAL condition, with REAL treatment options.

This means we should be able to get a diagnosis faster, and with more certainty!

IBS diagnostic criteria is defined as symptom onset at least 6 months ago, with recurrent abdominal painor discomfort for at least 3 days per month for the last 3 months, with at least two of the following:

• Improvement of symptoms with defecation
• Onset associated with a change in the frequency of stool
• Onset associated with a change in the form/appearance of stool

So if we have a better way to diagnose, why does it still feel so vague to be diagnosed with IBS? There still seems to be some conflicting opinions in the medical community about diagnosing IBS based on exclusion vs. symptoms.¹ It seems many health care providers still unintentionally hold biases about IBS.

IBS stigma from others

The reality is, between 10-20% of the population of developed countries have IBS.⁵ And these numbers are probably under-reported. Why? Because of people feeling stigmatized and that IBS isn’t a real diagnosis leading to people not seeking medical attention for their symptoms, or perhaps feeling like their diagnosis was ‘wishy-washy.’⁵

You may be asking why someone wouldn’t seek help if they were in pain. The truth is, people feel stigmatized when they have IBS. Many of my clients have been tossed around from one medical professional to the next, going through the ringer of extensive testing before they ever receive a diagnosis.

What physicians don’t always realize is that this may leave the impression that IBS is not important or relevant. Or perhaps that symptoms are “all in their head” rather than a real health concern.

On top of this, it is common to feel stigmatized by the people closest to us. It can be difficult for our friends and family to understand what it’s like to have IBS. It often results in feeling judged or misunderstood when we feel the need to cancel plans or when talking about our symptoms.

IBS stigma within ourselves

Stigmatization in IBS is not only coming from friends, family, and healthcare providers, but also from within IBS patients themselves.² In fact, the two are connected – our internal shame is likely as a result of feeling stigmatized by others. We do tend to internalize things we believe to be true.

Something I see often with IBS patients is the feeling of alienation. IBS can be a very isolating condition. Poor bowel function, pain, and gas can feel very embarrassing and often result in feeling socially withdrawn or “tied to the bathroom.”

One way we can help to reduce this feeling of alienation is to encourage open discussion about IBS and it’s associated symptoms. As I like to say – we need to get comfortable talking about poop!

What can be done?

It’s clear that each person with IBS has a unique story – that SHOULD be heard – I know through practice that by carefully listening to what my patients have gone through lead me to better solutions to manage their symptoms.

The first and possibly most important step is getting that story – in detail. Each of my staff and myself take extra time to gather the facts.

Storytelling is such an important part of finding solutions that works best for our IBS patients. By listening to your story, health care professionals can build a strong connection with you, validate your problem, and fully understand your symptoms.

The proof is in the research - building a lasting connection with clients has been connected to reduction in symptoms, more satisfied patients, and even a decrease in visits to the doctor.⁴ Say hello to more free time and less health-related stress!

It shouldn’t stop there either – we need to work together as health professionals and take a multi-disciplinary approach to IBS management. To put it simply, more clever minds working together is a great way to ensure all those with IBS get the treatment they need.