Personal Experiences Of Living With ALS/MND: Illness Narratives Posted On The Web

Background: Experiences reported in internet narratives, as opposed to those appearing in other media, are more likely to be written as they occur and rarely undergo reflective editorial processes. Hence, they are often written with a degree of poignancy and intensity not found in other media. Objectives: To determine: 1) What PALS/PwMND write about their illness experiences; 2) Why PALS/PwMND write about their illness experiences; 3) What the benefits of writing are. Methods: The process of identifying internet narratives by people with ALS/MND has been reported previously (1). This process ultimately generated a sample of 64 electronic narratives, which were subjected to a content and thematic analysis, aided by Nvivo software. Results: A number of key themes emerged. Most narratives contain a strong emphasis on regular condition updates, often including tips on how to manage particular symptoms and disabilities. Several authors, despite increasing loss of function, stress the importance of what can still be done, rather than what has been lost. Many refer to this as ‘‘living with, not dying of ALS/MND’’. There is a sense that authors have remained ‘whole’ in their thoughts, despite their physical deterioration. Frequent comments are made about the impact on and changes to relationships with others, usually partners/ spouses and referred to as their ‘‘loss of life’’. There are numerous reports of searches for alternative and complementary therapies, which help to provide a sense of personal control in a life that is otherwise ‘‘out of control’’ and generates a feeling that they are doing something for themselves when conventional medicine has little to offer. Most authors display altruistic motivation for writing; they share their experiences (including the testing of unproven treatments) and knowledge of the disease to lessen the burden on others. They provide resources for others, in terms of advocacy, information and support; several raise awareness and educate, many inspire, offer hope and provide an example to other sufferers of how to cope with the diagnosis of ALS/MND. Authors view the narrative writing process as therapeutic, and for some, helping to remove the final barrier to admitting their diagnosis by ‘‘going public’’. Readers report being comforted, supported and enlightened. Publishing on the internet provides an opportunity to communicate with other PALS and reduce isolation. By being visible, authors act as a beacon for others and a source of invaluable information for patients, carers and health professionals. Discussion and conclusions: Illness narratives enable individuals to document how illness has impacted on their lives and the lives of those closest to them. The electronic narratives of illness identified in this study comprise a rich source of data about issues which people with ALS/MND regard as important.