Life and work with multiple sclerosis (MS) : the role of unseen experiential phenomena on unreliable bodies and uncertain lives

This article extends my earlier Heideggerian phenomenological work (Vickers, 2001) which explored the life and work of people with unseen chronic illness. Here I report findings of another phenomenological study where I interviewed people with Multiple Sclerosis (MS) about their life and work. For around 70% of people with MS, the disease is characterized by seemingly random cycles of exacerbations (relapses) and remissions. Often, their disease is unseen by others. Even those that have visible disabilities are highly likely to have many unseen symptoms. Fatigue, diminished strength and stamina, bowel or bladder dysfunction, visual impairment, depression, anxiety, pain, cognitive difficulties, and sexual dysfunction may all prove challenging for people with MS during their life and work. In addition to unseen symptoms are other unseen personal phenomena impinging on these people's lives that are not understood by others, such as thoughts and emotions. Twenty-one interviews were conducted resulting in over 43 hours of interview data from 35 tapes, and 335,258 words and 1,222 pages of verbatim transcribed data. What is presented here is the role of the various unseen personal phenomena in the 2 emergent phenomenological themes: unreliable bodies and uncertain lives.