When people get sick we think of two sorts of illness. It’s either an acute problem where the person will get better in a short time or that it’s a chronic condition, one where the problem exists for a long time. However it’s common for medical communication to talk about these two different disease experiences in the same way. Medical communication and goals for treatment focus on the disease or conditions but not the patient as a whole. At this larger level we are missing some points that might help improve both short-term and long-term ways people experience disease. I want to make the case for understanding both the patient journey at a medical level and understanding the patients life story or narrative as it relates to disease as an equal part of therapy planning.
We treat acute and chronic conditions in the same way. Our aim is to get the person back to normal. That sounds intuitive and without question but when we look a little closer this may not be the only way. Each of us has a life story or narrative that guides us. Think of it as the way we make decisions relative to our personal story and it’s the way we authenticate ourselves. This narrative is made up from the stories we tell ourselves about the past and the future we expect for ourselves. Our health is very much part of this narrative.
When someone gets acutely sick our outlook on life changes. We wish to return to the “normal us” in line with the stories we have about what we used to do and what we want to do in the future. Most acute episodes allow us to return after a period back to the normal narrative. The problem comes in chronic conditions, which are permanent deviations from our expected narrative path. Over a time a new narrative forms, incorporating the new and often-limited possibilities the chronic condition allows. This period of adaptation is part of the coping mechanisms we use to live within sickness.
While this process looks logical and familiar, it may offer new possibilities in caring for people with chronic conditions. The use of storytelling as part of therapy may help both the goals of treatment and the path of therapy to be tailored better to the person. This thought comes from idea that healthcare should be more about personal wellbeing than focused just on the sickness aspects of illness. In acute cases this wellbeing is often in the form of comfort and with comfort the person is often closer to the normal narrative. The speed of resolution of the condition equals the speed of returning to the normal narrative. As long as there are not frequent acute episodes there is little long-lasting disruption to the normal narrative.
In chronic conditions there is a different dilemma. The normal narrative is under threat and more often than not permanent changes are made in a person’s life. For example diabetes requires a permanent change of diet and arthritis often limits activity. In each of these cases the normal narrative is adapted and eventually leading to a new narrative.
So the way we approach wellbeing must be seen through the narrative we are aiming to support. In most acute cases it’s a return to the normal narrative. In chronic conditions it’s an adaptation to a new narrative. We most also recognize that in many conditions people are transitioning to hybrid people. These people are incorporating new tools like wheelchairs, pacemakers and crutches into their lives and narratives. These become part of their identity and they incorporated into the person’s personal story.
The use of story in healthcare allows us to think more holistically about illness and move the goals of wellbeing within illness to goals of recovery and existence in the future. Given the right story goals we may adapt to illness within wellbeing. This phenomenological approach attempts to align the goals of pharmacological therapy with types of therapy like psychological or even philosophical in the attempt to create the best new normal narrative for people living with disease. If the goals of therapy do not match the new narrative forming in people’s minds, the outcomes of treatment will always feel sub-optimal. If we are always expecting and communicating the outcome of treatment will return people to the normal narrative and do not help to build the new narrative (the one which is achievable for the person to live with illness within wellbeing) we are likely to fail to make the best outcomes. One result of this misaligned story is poor adherence to medical advice like taking pills, dieting, improving exercise. It’s possible that people fail to adhere to medical advice as they have not accepted the role of the medical advice as part of the new narrative towards wellbeing.
So to make sure we are supporting this way of thinking we should spend more time thinking and understanding people´s personal story and the way it may need to adapt in the face of chronic illness.
This post was inspired by the writing of Illness- The Art of Living by Havi Carel and of and Atul Gwande’s (Reith Lectures)