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research aim
Living well with arthritis means very different things to different people. Some people seem to live their lives very effectively despite huge obstacles, whilst others seem to struggle painfully. All have good days and bad days but there are those who seem able to live life well regardless. The quality of their lives remains high and their visions for the future seem somehow unhindered. I want to discover why and how this is so.
Being a person with arthritis, a researcher, a nurse and a trained facilitator gives me a unique opportunity to see my project from multiple angles. I can freely communicate with each group. Each of my roles informs the other. My peers in each group give me constructive feedback and point out where I may be speaking with the wrong voice.
the moral quest
Illness narratives or illness stories have been used extensively in medical social science and anthropology; first to explore clinical practice and patients' experiences of doctors (Hyden 1997). Later the focus was on the experience "suffering". Arthur Kleinman (1988) wrote extensively on the need for effective narrative analysis in order to treat patients effectively as individuals. Recently Frank (2000) has suggested that illness narratives stand independently, speak of the complete experience and is both therapeutic and emancipatory.
Having arthritis often destroys an individual's life map. People need time to rediscover their bearings before they can plot a new course. Sharing their story with another allows this. On hearing oneself, a new position on the map is plotted and new horizons are perceived. Hearing others' stories allows for different destinations and routes to emerge. I have come across people, silent for 25 years, for the first time able to tell their story to others with arthritis. They then start to look at their lives differently with new understanding. This simple exchange in itself leads me to believe in a moral quest for more stories to be heard.
Therapeutic illness narratives need an active listener who engages in such a way that they walk through the story together. They come away from the encounter enriched and changed by the experience and have begun a relationship with the teller. It is growthful for both parties. The active listener is also a witness to unfolding events within the story. The storyteller too, becomes a witness to their own story: hearing and re-hearing themselves helps the witness self to emerge. At this stage, the storytelling becomes therapeutic as the teller can begin to make sense of the past and of the present as well as see the future.
three kinds of narrative
Arthur Frank (1995) suggests three main types of narrative and that in the West, we are preoccupied with the restitution narrative, which goes: "Yesterday I was healthy, today I am sick but tomorrow I will be healthy again". There is a belief in restorable health. People with arthritis do not fit this model so can find it difficult to tell a story without a happy ending.
The Chaos narrative remains most frequently unheard. When someone is overwhelmed by the intensity of their illness, to speak coherently becomes impossible. Lived chaos cannot be told. Only when there is a tentative ability to stand outside the chaos can the story begin to emerge. Frank calls it "the anti-narrative of time without sequence, telling without mediation and speaking about oneself without being fully able to reflect on oneself". The challenge of listening is to not steer the teller away from the difficulty of telling. It is to hear. Chaos narratives are often disjointed and without sequence. The underlying message is that life does not get better. There is no happy ending. All this provokes anxiety as the mask slips off to reveal human frailty and vulnerability. Revealing how easily each of us could be toppled has a deep effect on the listener.
This narrative is often only witnessed by close friends and family, who find listening painful and frustrating. It is natural too long for a restitution narrative where life returns to normal and the teller returns to their former self. This frustration is often unknowingly communicated to the teller who then cannot share their true story for fear of further upset. Platitudes or silence follows. This is when hearing others' stories can be enormously supportive, especially when in a state of despair. I have often heard the words "It's so good to meet with other people and chat, I no longer feel alone".
opportunities
There are many organizations represented here at EULAR, which support people with arthritis and offer them a range of opportunities to tell their stories formally and informally. I am sure that these will continue to develop in the coming years. Now that people's individuality is respected I am confident that narratives will form a focal point for future research and help to inform a more collaborative relationship with all health care professionals. If we can listen to all the different narratives we can reveal an enormous wealth of detail about how people live their lives well with chronic illness.
small groups
Co-operative inquiry seems well suited to this research. Small groups of people with arthritis can be brought together over a long period of time to explore wellness in practice: to share narratives; to identify questions and projects; to test ideas and to pool resources. Repeated cycles of inquiry would alternate between reflection and action and refine and develop the inquiries.
living well
Undoubtedly living well with arthritis means different things to different people. I have met people who have found a treasured aspect of their lives and nurtured it. This gives them immense satisfaction and fulfillment in life. They have let go of less important aspects of life to ensure they live well in what they do. Narratives can play a crucial role for individuals to discover what wellness might be and a supporting philosophy for life. I want to support people with arthritis to learn these things.
a successful attitude
Ruth who is 85 and who has had arthritis for thirty years explains her life with arthritis this way. "After all these years I can do less and less, but the doing of that less is one of my chief physical and psychological joys". What strikes me most of all is her joy of life despite it all. Later she writes "One bit of life philosophy that has saved me from even the slightest bitterness over the arthritis is my ever-present conviction that no power on earth or in heaven inflicted this disease upon me: not God, not Nature, not those sisters the Three Fates. The arthritis was an entirely random statistical occurrence, and consequently I have no one and nothing to blame or complain to. I am not a victim. Nor do I find it appropriate or relevant to pity myself. As much as I must contend with every day, there are many, many others who must contend with more than I." (Bendor, 1999) This speaks volumes.
references
Bendor, R. (1999). On being a patient. Annals of Internal Medicine. Vol 131. No 2, 150-152.
Frank, A.W. (1995). The wounded story teller: Body, illness, and ethics. Chicago: The University of Chicago Press.
Frank, A.W. (2000). The standpoint of the storyteller. Qualitative Health Research, Vol.10 No.3, 354-365.
Heron, J. (1996) Co-operative Inquiry: Research into the Human Condition, London, Sage Publications.
Hyden, L,C. (1997). Illness and narrative. Sociology of Health and Illness, Vol. 19, No 1, 48-69.
Kilty, J.M. (1993). Fundamentals of Co-Counselling. Cornwall Co-Counsellors.
Klienman, A. (1988). The Illness Narratives: suffering, healing, and the human condition. Basic Books.
