On the internet you don’t need feet: using technology to overcome changes in relationships with society following a diagnosis of ALS/MND

Background: Recording personal experiences of ill health within an illness narrative enables individuals to document how their condition has impacted on their lives and helps to illuminate the steps they have taken to overcome adversity. Objectives: To gain an understanding of the role of the internet in the personal experience of living with ALS/MND. Methods: 161 print and internet narratives identified as a result of a detailed systematic search strategy 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 use of modern technology by people diagnosed with ALS/MND in their attempts to cope with the disease. Being isolated pervades many narratives, as authors retreat from their everyday activities. The emergence of the internet and the availability of chat rooms and discussion groups specifically for people with ALS/MND have opened up numerous opportunities for interaction with the outside world. This has helped to ease the sense of isolation experienced by many authors as their condition deteriorates. New virtual friendships develop as traditional friendships fall away. Those authors experiencing dysarthria comment on how it removes them from spontaneous interaction with others. Communication becomes a matter of need rather than a social exchange. An inability to convert one’s thoughts into the spoken word results in a sense of increasing isolation from the world. Accessing the internet allows authors to overcome their disabilities, even if only momentarily. Discussion and Conclusion: Illness narratives about life with ALS/MND allow individuals to document how they have adjusted to the effects of the disease. These findings indicate that, despite their disabilities, those diagnosed with the illness can continue to involve themselves within society on a number of levels through accessing the internet.