IBS: pity, compassion and discrimination

The effects of IBS on quality of life may be more substantial than those of many other chronic diseases. It affects school, work and life, putting the sufferers at risk for social isolation. 

Numerous books, columns and blogs about this condition affirm that social problems arise because the sufferers are trying to hide the fact they have IBS from others. Keeping secrets is stressful, while being upfront and coming out of the closet is the best strategy. Is it really?  

Studies about emotional reactions towards people with chronic condition often lead to mixed results. 
For example, there was a slight increase in the readiness to feel pity to depressed people since the 90s, yet there was no increase in compassion.

The most important consequence of TMAU - a metabolic disorder causing an offensive body odor - is social. This condition is not a subject of compassion, but rejection and ridicule resulting in low self-esteem, social ostracizing, anxiety and depression.

Obese people (body mass index of 35 or higher - a condition that can't be hidden and kept in secret) are more likely to report day-to-day interpersonal discrimination and mistreatment. Recent study showed that weight discrimination makes people 2.5 times more obese after 4 years of discrimination instead of helping them to reduce their weight. People don't feel compassion as they consider obese individuals lazy, unsuccessful and weak-willed. 

Same can be applied to IBS.

"The hardest thing is that other people who don’t have IBS can never understand what it is like”, says a sufferer in comments to an online article. People with IBS are often discriminated and the blows to self-esteem make it harder for them to make meaningful changes to their lifestyle, and to ease the symptoms. 

Compassion is a very valuable process that motivates sufferers as well as people around them to cooperate in achieving better outcomes. Professional education  - based on visual arts and other methods -  is often recommended in developing compassionate physicians, dietitians and nurses. But shouldn't we teach society as a whole to be non-judgemental, treating sufferers of chronic conditions with respect and compassion? And what should those with chronic illness do in the current society? 

Don't view your condition as a weakness and  - when you need to tell others about it - keep it unemotional. People don't like sob stories, no matter how true or heartbreaking they are. Don't look for pity, impress them with your strength. Be able to tell the difference between a joke and bullying. Have a laugh with them and try to find better job environments and people that care.



REFERENCES

Sutin AR, & Terracciano A (2013). Perceived weight discrimination and obesity. PloS one, 8 (7) PMID: 23894586

Angermeyer MC, & Matschinger H (2004). Public attitudes to people with depression: have there been any changes over the last decade? Journal of affective disorders, 83 (2-3), 177-82 PMID: 15555711

Bray L, O'Brien MR, Kirton J, Zubairu K, & Christiansen A (2013). The role of professional education in developing compassionate practitioners: A mixed methods study exploring the perceptions of health professionals and pre-registration students. Nurse education today PMID: 23880325

Quality of Life in Irritable Bowel Syndrome

It's not news that IBS is tough. The unpredictability of symptoms, misunderstanding by peers, fear,  misconceptions, desperation, all contribute to discrimination of sufferers and significant impairment of quality of life. In fact, IBS sufferers are affected by greater physiological and physical disturbances than patients of inflammatory bowel disease, proving that wellbeing is not directly associated with observable morbidity.

The most common psychological problems of IBS are anxiety, depression, panic, and post-traumatic stress. According to an Australian study (Mikocka-Walu et al, 2008), anxiety is a greater problem than depression, while a recent Korean study (Hyun Sun Cho et al., 2011) shows the same prevalence for anxiety and depression (observed in 38.6% and 38.6% of IBS patients, and in 24.2% and 16.5% of healthy subjects, respectively). Indeed, different cultural environments enhance or decrease problems associated with IBS - Greeks, for example, take it harder than the Swiss (Faresjö et al., 2006). Differences in IBS prevalence could also be the result of different environments, creating a reluctance to talk about digestive issues. In countries such as United States and UK more people may be suffering in silence.

The questionnaire below was developed by Kaiser Permanente (Longstreth et al., 2005) to capture the impact of irritable bowel syndrome and its treatment on patients’ lives.

References

Longstreth GF, Bolus R, Naliboff B, Chang L, Kulich KR, Carlsson J, Mayer EA, Naesdal J, Wiklund IK. Impact of irritable bowel syndrome on patients’ lives: development and psychometric documentation of a disease-specific measure for use in clinical trials European Journal of Gastroenterology & Hepatology 2005, 17:411–420

Groll D, Vanner SJ, Depew WT, DaCosta LR, Simon JB, Groll A, Roblin N, Paterson WG. The IBS-36: a new quality of life measure for irritable bowel syndrome. Am J Gastroenterol. 2002 Apr;97(4):962-71.

Faresjö A, Anastasiou F, Lionis C, Johansson S, Wallander MA, Faresjö T. Health-related quality of life of irritable bowel syndrome patients in different cultural settings. Health Qual Life Outcomes. 2006 Mar 27;4:21.

Mikocka-Walus AA, Turnbull DA, Andrews JM, Moulding NT, Wilson IG, Harley HA, Hetzel DJ, Holtmann GJ. Psychological problems in gastroenterology outpatients: A South Australian experience. Psychological co-morbidity in IBD, IBS and hepatitis C. Clin Pract Epidemiol Ment Health. 2008 May 23;4:15.

Cho HS, Park JM, Lim CH, Cho YK, Lee IS, Kim SW, Choi MG, Chung IS, Chung YK.
Anxiety, Depression and Quality of Life in patients with irritable bowel syndrome  Gut Liver. 2011 Mar;5(1):29-36.