Transformation of relationships following a diagnosis with ALS/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 living with ALS/MND as documented in personal illness narratives, written by people diagnosed with the illness. Methods: A detailed search strategy loosely based on systematic review methodology was adopted to identify illness narratives in print and internet form written by people diagnosed with ALS/MND. The 161 narratives identified were subject to content and thematic analysis. Data management was aided by Nvivo 7 software. Results: A number of key themes emerged. This paper focuses on the transformation of relationships at a number of levels following a diagnosis of ALS/MND. Authors comment that they endure changes in their relationships within the family and an altered dynamic within the domestic setting. This is particularly apparent with considerations of gender, where individuals are no longer able to perform ‘usual’ gender specific activities. There is evidence of inversion of relationships as changes occur within generational roles as individuals develop dependent relationships on others. Numerous narratives, regardless of genre, document authors’ changing relationships with their own bodies. There is a strong impression of accelerated aging and the use of powerful imagery in an attempt to capture the impact of the disease at a personal level. For some, defined by their occupation, there is loss of identity when employment ends. Changes within the immediate environment result in the loss of individuality and private space. Many authors convey their sorrow at the loss of their ability to initiate physical contact, particularly with their spouse/partner. Relationships are also affected by a loss of intimacy between husband and wife. The disabilities caused by ALS/ MND engender a sense of vulnerability in some people at having to rely on others for their needs. Discussion and Conclusion: What we have here is authors writing about the various changes forced on them as a result of their illness. What emerges is a sense of attempts to overcome adversity and re-evaluate life in light of current circumstances. These illness narratives provide an insight into the effects of the disease on the individual diagnosed with ALS/MND. They also provide a glimpse into the world of other people from the perspective of the ill person. As such, the findings have implications for the training of health care professionals involved in the care of people with ALS/MND.