From Symptom awareness to illness recognition and beyond: personal experiences of being diagnosed with MND

Background: Health professionals are increasingly attempting to understand illness from the patient’s perspective. Making use of illness narratives is one way of becoming more informed about the personal experience of living with illness. Objectives: To explore the personal experience of a) becoming aware of symptoms b) the recognition of these as indicative of illness serious enough to warrant medical attention and c) the process of being diagnosed with ALS/ MND. Methods: We previously reported the processes used for locating published and unpublished personal illness narratives about life with ALS/MND (1). The 161 narratives identified were subject to content and thematic analysis with reference to Frank’s narrative typologies, restitution, chaos and quest (2). Data management was aided by Nvivo 7 software. Results: A number of key themes emerged. This paper focuses on the story of the time leading up to and around the diagnosis. Authors reveal how they recognise abnormalities presenting as symptoms, attribute changes in their body to illness and assess the magnitude of their condition. This results in a change of status from symptom awareness to illness recognition. Adopting the characteristics of the restitution narrative numerous texts reveal authors’ reactions to vague initial symptoms and their attempts to explain away the problem as being of little significance. The realisation that their condition is serious is often reflected in a move away from a restitution narrative towards one of chaos, with its dominant message of loss of control. Many authors describe sanctioning of help-seeking where their health concerns are legitimated by others. Undergoing investigative tests is consistently described as an unpleasant, confusing and often dehumanising process. Authors recount trauma-filled reactions when given their diagnosis. Many react in disbelief that their condition can be so serious, yet they feel remarkably well and display only minor symptoms. Some report feelings of anger, disappointment and abandonment resulting from the inability of medical science to offer a viable cure. Seeking recovery, often through the use of alternative treatments, provides evidence of a return to the restitution narrative, while viewing the illness as a challenge to overcome reflects the adoption of the quest narrative. Discussion and conclusion: These illness narratives throw light on the personal experiences leading up to and around the time of a diagnosis of ALS/MND. The results have implications for the training of health care personnel and for the care provided at this distressing and traumatic time.