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Not seen and not heard

Stephanie Rhodes (University of Wolverhampton) calls for more understanding over the psychological implications of 'invisible' physical illness.

29 November 2016

For decades, we have been primed as to what a disability looks like; a stick person in a wheelchair. But not all disabilities can be seen, and around the world there are millions of people suffering with non-visible illness. The World Health Organisation (2015) has attempted to incorporate a far more multidimensional view of disability; one that considers the biological, social and psychological factors that may limit activity and participation in society. Yet the inaccurate perception of disability has long since been branded into the minds of the public.

Psychology as a discipline has certainly recognised the suffering that can occur in the hidden corners of the mind, and the consequences that this can have upon human behaviour. Yet there exists a multitude of physical illnesses that cannot be seen which, whilst not psychological in origin, can have very real and devastating effects when the invisible burdens continue to go unrecognised.

It could be argued that the attention has not solely been applied to overtly visible illnesses. Substantial quantities of research studies have investigated the impact of self-help interventions upon cancer patients (Matcham et al., 2016) and the effectiveness of psychosocial interventions for adolescents and younger cancer sufferers (Richter et al., 2015). Nevertheless, cancer can become very visible with patients experiencing extreme hair loss and fragility during chemotherapy and radio-therapy treatment.

Sadly, there are illnesses that have received considerably less recognition and support, from a psychological perspective, simply due to the sensitive nature of the illness and the apparent ‘invisibility’ of the condition. Inflammatory Bowel Disease (or IBD) refers to a group of gastrointestinal diseases such as Crohn’s disease and Ulcerative Colitis that cause symptoms such as diarrhoea, urgency, severe abdominal pain, bloody stools and fatigue. Unfortunately, no cure exists for the condition but genetic, environmental and immune factors are thought to contribute to the onset and relapse of illness (Cosnes et al., 2011). Worryingly, the numbers of cases are increasing exponentially, specifically amongst children and adolescents with no known cause or cure. Symptoms can be extremely distressing, debilitating and embarrassing for sufferers yet little or no psychological invention programmes have been routinely employed to support patients diagnosed with the disease despite substantial evidence suggesting that emotional life events or experiences can exacerbate symptoms (Keefer et al., 2008).

The unpredictability and uncertainty of the disease, along with the hidden damage and deterioration occurring inside the body, can cause significant psychological upset. As outlined in Sajadinejad et al. (2012), the potential psychological impact can be substantial. Loss of bowel control and changes to body image due to medication side effects can lead to social isolation, impairments of body image, feelings of inadequacy, a concern of not reaching one’s full potential and feeling unclean. In fact, an array of psychological and social difficulties have been identified with IBD, yet it appears that little attempt has been made to design cognitive-behavioural therapies that can be delivered to patients as a routine treatment option.

An alternative factor may be the potential disgust that society assigns to toilet habits and defecation in general. Interestingly, we possess individual differences in our experience of disgust. Is it fair to say that sufferers of bowel disorders such as Crohn’s disease, who may require ostomy surgery at some stage in their lifetime, can be seen as having a medical condition that may elicit disgust? If so it may not be surprising that sufferers may struggle to convey their emotions to others and that emotional expression has been shown to be significantly reduced (Moreno-Jimenez et al., 2007). The very nature of the illness may simply make it very difficult for patients to covey the pain, distress and embarrassment that they experience simply because the details of our toilet habits, healthy or otherwise, is not a topic that people drop into polite conversation. However, this can only increase the feeling of isolation for IBD sufferers; the illness cannot be seen and their experiences cannot be heard. Thus increasing the barrier between the patient and family, friends, co-workers and society.  

At present sufferers of embarrassing conditions, such as Crohn’s disease, are turning to social media for support and are using humour and inspirational anecdotes to increase moral. However, the community of sufferers are still isolated in the wider context. It would be unfair to suggest that the psychological impact of IBD has been ignored by academics. However, the potential for research in this area in particular is vast, with IBD affecting every area of life including education, career progression, relationships and friendships, social acceptance, pregnancy and child-rearing and the psychological impact of invasive surgical procedures such as ostomy surgery and colonoscopies. Many sufferers are diagnosed during childhood and adolescence whereby the formation of self-identity and inclusion are so vital.

Of course, IBD is one of many physical illnesses that cannot be seen. Sufferers of Chronic Fatigue Syndrome and Fibromygalia are also poorly understood conditions that can receive little support and/or recognition from wider society. Psychologists certainly have a responsibility and duty to understand the psychological impact of physical illness in order to improve the quality of life of those suffering with chronic illness; visible or non-visible. With research and understanding, we can enrich the lives of those suffering with hidden disability and dispel the ignorance of what it means to be disabled.

- Stephanie Rhodes is Demonstrator in Psychology in the Institute of Psychology, Faculty of Education, Health and Well-being, University of Wolverhampton. [email protected] Crohn's and Colitis Awareness Week runs from 1-7 December.

References 

Cosnes, J., Gower-Rousseau, C., Seksik P., & Cortot, A. (2011). Epidemiology and natural history of inflammatory bowel diseases. Gastroenterology ,140, 1785–1794.

Keefer, L., Keshavarzian, A., & Mutlu, E. (2008). Reconsidering the methodology of stress research in inflammatory bowel disease. Journal of Crohn's and Colitis, 2(3), 193–201.

Matcham, F., Rayner, L., Hutton, J., Monk, A., Steel, C., & Hotopf, M. (2014). Self-help interventions of depression, anxiety and psychological distress in patients with physical illness: A systematic review and meta- analysis. Clinical Psychology Review, 34, 141.157.

Moreno-Jim´enez, B., Blanco, B.L., Rodrıguez-Munoz, A., & G.Hernandez, E. (2007). The influence of personality factors on health-related quality of life of patients with inflammatory bowel disease. Journal of Psychosomatic Research62(1), 39–46.

Richter, D., Koehler, M., Friedrich, M., Hilgendorf, I., Mehnert, A., & Weiβflog, G. (2015). Psychosocial interventions for adolescents and young adult cancer patients: A systematic review and meta-analysis.  Critical Reviews in Oncology/Hematology, 95, 370- 386.

Sajadinejad, M.S., Asgari, K., Molavi, H., Kalantari, M., & Adibi, P. (2012). Psychological issues in inflammatory bowel disease: an overview. Gastroenterology Research and Practice. Retrieved online September 2016: doi:10.1155/2012/106502.

World Health Organisation. (2015). Disabilities. Retrieved from http://www.who.int/topics/disabilities/en/