Annefleur Langedijk, hoofdredacteur
Hedwig Ens (eindredactie)
Will van Houten (eindredactie)
Susanne van der Kleij
dr. M. Dekker
dr. M. Keestra
drs. S. Sitalsing
prof. dr. F. van Vree
drs. L. Wenting
The ways in which people experience and cope with an illness is an interesting topic worth researching. Insights into illness experiences and coping strategies lead to a better understanding of how people give meaning to health and illness. Even more important, this kind of research highlights what people exactly go through and from what kinds of support they might benefit the most. When looking at illness experiences the most obvious is to examine those of patients. But what about the people in their direct surroundings? Although their bodies are not directly affected, their lives certainly are. Knowledge about the experiences of partners may be particularly useful concerning the so-called participation society and current reforms in health care, which lead to greater responsibilities put on the shoulders of the inner circle of sick people. In this article, I provide a fresh perspective at the situation of ill people by focussing on their direct surroundings: their partner. I will explain that the concept of uncertainty is at the core of partner’s experiences, and how they make sense of their new lives by applying coping mechanisms.
Before diving into the experiences and coping mechanisms of partners, however, it is helpful to take a look at what medical anthropology exactly is. Anthropology in general aims at uncovering hidden structural tendencies in cultures or phenomenon’s that are taken for granted by the people native to this culture. Knowing more about the underlying structures of a particular situation or phenomenon is useful for understanding how the situation might have arisen, and therefore how it can be dealt with. These larger structures are usually locally investigated using qualitative methods as interviews, case studies and participant observation. The subfield of medical anthropology focuses especially on issues concerning health and illness.
During the last decades, an increasing desire has developed in both anthropology and medicine to vocalize the undervalued experiences of people dealing with illness in some way (Green & Thorogood, 2014). Nowadays, it is recognized that Narrative Theory (largely developed in and later borrowed from literary theory) is particularly suitable when examining these unnoticed experiences of illness. This theory states that we tell our social environment and ourselves a particular story or narrative about whom we are, through which we are constructing a meaningful identity (Ezzy, 1998, 2000). Our stories are based on our experiences in life, serve as a blue print for the way we experience the present, and determine our outlook on the future. When we gather new experiences, we gradually adapt our story, to a greater or to a lesser extent. However, when something serious or bad happens (e.g. you or your partner turns out to be terminally ill) the story you used to tell about yourself, your life, and your future does not fit with this new present situation you suddenly have to deal with. You are forced to make sense of this sudden disruption and to adapt your whole story to cope with the new situation that gives rise to many uncertainties.
A partner’s narrative
The way in which partners of cancer patients told and adapted their stories of themselves, their lives, and thus their identities, was what I investigated for my Master thesis in Medical Anthropology and Sociology. What did these partners actually experience? Far and foremost, the concept of uncertainty became invasively present in their lives. Partners first of all told about the shock when hearing the diagnosis. After that, the uncertain outcome of the disease and treatment of their ill partner and the sudden proximity of death caused profound changes in everyday life. For example, partners were forced to take over responsibilities in areas as finances, childcare and everyday practicalities. Furthermore, as the patient often became dependent on the care of the partner, the (balance of the) love relationship inevitably changed. The illness thereby influenced the experience of intimacy and sexuality in the relationship. Partners also spoke of what it meant to be ‘a good partner’ in times of sickness. Many were confronted with implicit norms about, for example, the extent to which they should care for the patient, and to what extent they were ‘allowed’ to think of themselves. In other words: partners experienced much uncertainty due to the profound changes in their lives and their identity. In medical anthropology the experiences of the partners would be referred to as a so-called biographical disruption (Bury, 1982). This concept refers to the disruptive effect of an illness on someone’s life.
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1982 Chronic illness as biographical disruption. Sociology of Health & Illness, 4 (2), 167-182.
1998 Theorizing narrative identity. The Sociological Quarterly, 39 (2), 239-252.
2000 Illness narratives: time, hope and HIV. Social Science & Medicine, 50 (5), 605-617.
Frank, A. W.
2013  The Wounded Storyteller: Body, illness, and ethics. University of Chicago Press.
Green, J. and Thorogood, N.
2014  Qualitative Methods for Health Research. Los Angeles, London, New Delhi, Singapore, Washington DC: SAGE Publications.
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