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An article by Sharon Kilty in The Patient's Network magazine, Vol. 5, No. 3, Winter 2000. Published by International Alliance of Patients' Organisations (IAPO) with additional headings. This is an amended version of the paper for Eular 2000.
Sharon Kilty is a member of Young Arthritis Care and sits on the UK committee (in 2000). She has lived with arthritis for 18 years. At present she is researching her PhD on concepts of wellness in chronic illness. She is based at the Rheumatology Unit at the Royal Cornwall Hospital [UK] as a member of the research team headed by Professor A. D. Woolf.
active patient participation
The power of telling one's story is immense and belongs squarely in the domain of active patient participation in the journey to wellness. Our human condition draws us naturally to listen as our ancestors did, gathering metaphorically around the campfire. Individuals with stories of illness and disability can change themselves and others by telling their stories. It is vital to create these opportunities.
identifying past and present
Illness stories have been used extensively in the realms of medical social science and anthropology, initially to try to uncover patients' experiences of their relationships with doctors, more in recent times to try to understand the experience of "suffering". Most recently they have been recognized by Arthur W. Frank, Professor of Sociology at the University of Calgary, in Canada, as the voice of "the illness experience" - not previously heard in its totality by the medical profession. These stories are now seen as standing alone without need for analysis or interpretation but as truths in their own right. This recognition allows illness stories to become both therapeutic and empowering for the person in the throes of a disease.
therapeutic and enlightening
Illness stories are therapeutic for tellers who have a real opportunity to be heard and to hear themselves. As they tell and retell their story they can unravel the truth of their own experience of illness and begin to adjust to the person they have become. From this position they can begin to uncover the person they could become. Telling their story has given them the opportunity to step outside of themselves and witness who they are. This dis-identification allows new possibilities to emerge.
Illness stories are therapeutic for others who also have a chronic illness or disability. Hearing the stories allows them to recognize that they are not alone; other people can understand their experience and even have similar experiences. They may discover new role models which show them how to work actively with their illness experience in ways that enrich their lives. Hearing illness stories from others may encourage people to take a risk and begin to talk about their own illness experience. In these situations not only is the telling of the story therapeutic for the listener as well as the teller, but it is also an empowering process for both parties. As more stories are told, each individual becomes empowered and the community of storytellers becomes enriched by the diversity of the human capacity to adapt and develop.
Illness stories are enlightening for everyone outside of the illness experience, be they family, friends, health care professionals or politicians. There is a famous saying "you cannot understand a man until you have walked a mile in his moccasins" - telling our stories begins to allow these individuals to walk with us through our illness experience in our moccasins. In time this will allow a deeper and more equal understanding of the illness experience to emerge.
different kinds of illness narratives
Arthur W. Frank suggests that three main types of story or narrative exist: the restitution narrative, the chaos narrative and the quest narrative.
restitution narrative
In the West, we are mainly 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 chronic illness and disability do not fit this model and so can find it difficult to tell a story which does not appear to have a happy ending.
the chaos narrative
The chaos narrative or story remains the most frequently unheard. When people are 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 refrain from steering 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. 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 particular type of story is often witnessed only by close friends and family, who find listening painful and frustrating. It is natural to 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 silences follow. 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".
the quest narrative
The third form of illness story is the quest narrative, in which a person journeys through and faces suffering head on in the belief that something is to be gained from the illness experience. Quest stories search for alternative ways of being ill or, as I would suggest, alternative ways of being well.
participating actively in narrative
I perceive in Frank's model a possibility to create therapeutic story telling where individuals share their stories as part of their healing into wellness. Presently most illness stories are told informally between friends over coffee or at support groups and other meetings of patients' groups. Some are published as biographies but most remain unheard. The research project I am currently engaged in aims to explore this whole area as a means of supporting people's journey to wellness. I firmly believe that there is such a thing as wellness in a life of chronic illness and disability and that telling our stories can help us discover what it means for us. I am sure that the organizations which are part of the International Alliance of Patients' Organizations (IAPO) can and do foster an environment where people can tell their stories. I believe they should create opportunities actively. The potential seems endless.
seeing the whole person
It is no longer enough for others to interpret or analyze what they think our illness experience is; rather there is a real need for them to accept our stories in their totality. Only when the whole story is honoured will we truly be heard. Seeing the whole person allows for a deeper healing into wellness where the mind, body and spirit can move on to the next chapter in the living story.
Arthur W. Frank, The Wounded Storyteller, Chicago/London, The University of Chicago Press, p. 98, 1995.
