The unpredictable nature and multitude of symptoms surrounding irritable bowel syndrome (IBS) make this condition incredibly complex. Nevertheless, this debilitating disorder is quite common, with approximately 10-20 per cent of people in Ireland affected. However, with no known cause, a stigma remains heavily associated with the illness.
The stigma of medical conditions often occurs because they are not understood and quickly finds its way in when an ailment is invisible or silenced. The stigma again amplifies when a condition has a relapsing and remitting course or is associated with taboo subjects. Because IBS is often spoken about in hushed tones, those with symptoms are likely to avoid talking about the condition, a level of shame is attached to the syndrome. And the belief that someone has control over certain behaviours and is responsible for the condition also instigates stigma.
The challenge is to navigate our own internalised stigma as someone living with IBS, reassess our own beliefs, and open the conversation, hopefully encouraging a shift in enacted stigma
IBS comes with symptoms common to many other ailments and illnesses, meaning it can be a tedious process of continuous doctor visits and tests before a diagnosis is made. The condition contributes to several clinical symptoms, including intestinal inflammation, alterations in gut flora, food intolerance and much more. Yet, it is often regarded as being psychological, which encourages the narrative of someone “bringing it on themselves.” Meanwhile, the person continues living through unknown debilitating pain, anxiety, isolation, and feelings of being discredited. Quality of life is significantly impacted, and it is common for a person’s mental wellbeing to be adversely affected as symptoms are brushed aside and misunderstood.
The misinformation and untoward spin of IBS does not help someone find solutions to the condition. Talking about IBS goes a long way in combating the stigma, embarrassment, and misinformation surrounding IBS, but conversation can only go so far. Combined with education, understanding, and raising awareness, the narrative can change. Stigma comes in three varieties: perceived – the sense or feeling that a person holds a particular belief towards them and are treated differently as a result; internalised – when a person believes the stigma towards them; and enacted – the discriminatory behaviours of others towards a stigmatised person. The challenge is to navigate our own internalised stigma as someone living with IBS, reassess our own beliefs, and open the conversation, hopefully encouraging a shift in enacted stigma.
Consultant Gastroenterologist, Professor Barbara Ryan and Clinical Dietitian, Elaine McGowan of The Gut Experts, recognise that battling the stigma is vital for patients. They aim to challenge the misinformation surrounding gut health, open the conversation, and avoid concealment of the illness.
“The first thing to realise is that IBS is incredibly common,” says McGowan. “It affects up to 1 in 10 people, and it’s 2.5 times more common in women, so there’s a good chance that someone you know has it. Doctors have seen and heard everything, so there’s nothing to be embarrassed about when discussing your bowel habits with them.”
Professor Ryan suggests studies have shown that many of those with IBS feel their experience is dismissed by friends, family and by healthcare professionals. “Because tests are always normal,” she says, “someone with IBS can have very significant symptoms and they often feel that people think ‘it’s all in their head’. It’s not. We now know that there’s an intricate network of connections between the gut and the brain, collectively known as the Gut-Brain Axis, which controls gut activity. In turn, this also affects brain function, and the balance of this axis is upset in people with IBS.
“This isn’t detectable through standard tests, but conditions like IBS are now considered ‘Disorders of Gut-Brain Interaction’ or DGBIs. We see patients every day who have given up doing things they love because of their IBS symptoms - many are afraid to be too far from toilet facilities.
“IBS can affect every aspect of a person’s life; mental wellbeing, work (afraid to give a presentation as anxiety can lead to an urgent bathroom call or diarrhoea, or very loud tummy rumbling), relationships and social activities.”
'Don't self-diagnose, as it's important to rule out other conditions that can mimic IBS, such as coeliac disease or Inflammatory Bowel Disease'
“A diagnosis of IBS can be very frustrating for some people as there’s no cure,” says McGowan. “However, there have been huge strides in our understanding and treatment of this condition, and most people can enjoy significant improvement through a holistic approach. This involves an individualised dietary plan to correctly identify food triggers, attention to mental health, the judicious use of medication in some cases, and ensuring adequate sleep and exercise, and modifying alcohol consumption where relevant.”
In navigating the misinformation regarding IBS, Prof Ryan and McGowan share an insight into how to traverse this stressful and complicated condition.
“The first thing for any person with digestive problems to do is to make sure that they get the right diagnosis,” advises Professor Ryan. This means that someone with symptoms of IBS should visit their GP and not self-diagnose. “A GP may or may not need to refer you to a specialist, such as a gastroenterologist, for further investigations. Don’t self-diagnose, as it’s important to rule out other conditions that can mimic IBS, such as coeliac disease or Inflammatory Bowel Disease.”
The obvious, but often disregarded advice is to find information from reliable sources, such as a registered dietitian, your GP, a gastroenterologist, or credible online resources such as the HSE, Irish Nutrition and Dietetic Institute (INDI), or clinically supported patient organisations such as Guts UK.
“Don’t follow overly restrictive diets or exclude whole food groups from your diet without advice from a registered dietitian,” McGowan recommends. “Many people are choosing to follow fully plant-based (vegan) diets, and these can worsen IBS symptoms, as can excessively “clean-eating”. This can also lead to nutritional deficiencies. Similarly, cutting out wheat or dairy isn’t necessary for most people, and these are important sources of fibre and calcium, respectively. The low FODMAP diet has almost become a household name in the last decade, and while it can be very effective for managing IBS symptoms, it’s a restrictive diet and was never meant to be a long-term solution and should only be followed under the supervision of a dietitian. Research has also shown that the low FODMAP diet leads to a reduction in some of the healthy gut bacteria.”
Finally, Professor Ryan reminds us not to be lured by ads for unvalidated commercial food intolerance tests. “These tests tell you more about what you’re eating and what you’re tolerant to than to intolerance or allergy,” she says. “Expensive stool tests telling you about the make-up of your gut microbiota, while interesting, are of no practical value. These tests are a waste of money.
“Similarly, please don’t take endless amounts of “natural” supplements or probiotics without getting to the root cause of your gut problems with a professional. There isn’t a one-size-fits-all approach to managing IBS, so working with qualified health practitioners is key.”