Irritable Bowel Syndrome is a common gastrointestinal disorder affecting 1 out of 10 humans worldwide. It is a poorly understood syndrome, consisting of plenty of medically unexplained symptoms such as abdominal pain, bloating, and changes in bowel habits (constipation, nausea, diarrhoea).
Doctor-patient relationships are often fraught with conflict and perceived stigma. For a long time, medical professionals doubted the existence of IBS and suggested it was the patient’s mind producing symptoms. A diagnosis can help with the confusion. As doctors have to tick several diseases off the list, the diagnostic process is still long, and patients point out feeling passed around in this process. They are often not taken seriously, told “we can’t find anything wrong with you” and keep looking for new professionals in hope of a cure.
However, a diagnosis does not represent a solution to the problem. Medical experiences can influence how a patient feels and acts about an illness. A recent study found that most healthcare encounters for people with IBS do not help them cope with the suffering. Rather, it induces a new form of suffering through feelings of confusion and anger. Moreover, there is no identified cure, and treatments are focused on managing symptoms, which leaves patients in a constant search for answers, as well as feeling frustrated and helpless.
Social stigma around IBS
Long-term medical conditions often lead to social stigma. The unpredictability and uncontrollability of IBS makes this illness especially vulnerable to stigmatisation. The symptoms are inconsistent and disrupt normal activities—pain, frequent bathroom
breaks, and a very restrictive diet might make life a living hell. Work, social interactions, and travel might become significant challenges for those with IBS. Patients even report fear of eating and of soiling themselves in public.
IBS patients can experience severe anxiety because of the social undesirability that comes with altered bowel habits and feel inadequate and faulty, which results in increased social isolation. Negative remarks and delegitimizing comments from others can make people try to hide their condition. However, it is a constant and draining struggle, where each social interaction has to be calculated. Imagine not being able to let your date cook for you or having to explain your diet each time you go out with a new friend! Digestive issues can be hard to talk about, it’s not just like having the flu, so patients usually conceal their illness to minimise stigma.
Over time, patients get more accepting of their illness, themselves, and their bodily patterns. It might change how they interact with society, but it becomes part of the routine and they learn how to live with it. Here you can read some tips on how to manage your IBS.
If you think that you can benefit from professional support on this issue you can reach here.
Roza Sara Somlai is an Educational Psychology and Counselling student at Eotvos Lorand University. She is currently an intern at Willingness.
Lacy, Brian, Fermín Mearin, Lin Chang, William Chey, Anthony Lembo, Magnus Simren, and Robin Spiller. 2016. “Bowel Disorders.” Gastroenterology 150: 1393-1407
Bertram, S., Kurland, M., Lydick, E., Locke, G. R., 3rd, & Yawn, B. P. (2001). The patient’s perspective of irritable bowel syndrome. The Journal of family practice, 50(6), 521– 525.
Casiday, R. E., Hungin, A. P., Cornford, C. S., de Wit, N. J., & Blell, M. T. (2009). Patients’ explanatory models for irritable bowel syndrome: symptoms and treatment more important than explaining aetiology. Family practice, 26(1), 40–47. https://doi.org/ 10.1093/fampra/cmn087
Björkman, I., Simrén, M., Ringström, G., & Jakobsson Ung, E. (2016). Patients’ experiences of healthcare encounters in severe irritable bowel syndrome: an analysis based on narrative and feminist theory. Journal of clinical nursing, 25(19-20), 2967–2978. https://doi.org/10.1111/jocn.13400
Cunningham-Pow, B.. (2018). Digesting Stigma: Exploring the Illness Experience of New Zealanders with Irritable Bowel Syndrome (‘It’s just shitty’).doi:10.26686/ wgtn.17069150.v1