The journey to multiple sclerosis: a qualitative study

J Neurosci Nurs. 1999 Feb;31(1):17-26. doi: 10.1097/01376517-199902000-00003.


The diagnosis of multiple sclerosis (MS) often creates more questions than answers. It is not uncommon to hear about individuals who receive the diagnosis with relief and surprise, However, the implications of being diagnosed with a chronic illness like MS is complex. There is no known cure for this disease that has remissions, relapses and possible continued progression. For individuals diagnosed with MS, responding to the physical and psychological stresses of a condition with an unknown cause and no cure is challenging. The purpose of this study was to explore the individual's experience of having symptoms for a period of time and then to be told they have MS. The phenomenological qualitative research method was used to illuminate the nature of their experiences. The time course spanned before diagnosis, at diagnosis and following diagnosis. Interviews were conducted with five purposefully selected participants. The process of data analysis highlighted common threads and patterns among informants. Four major themes emerged: Whispered Beginnings, Echoes of Silence, The Spoken Words, and Recreating Voice. The experiences of individuals recently diagnosed with MS are illuminated in order to provide insight and information to health care providers who are faced with telling a person the diagnosis of MS.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Activities of Daily Living
  • Adaptation, Psychological*
  • Adult
  • Attitude to Health*
  • Disease Progression
  • Female
  • Humans
  • Life Change Events
  • Male
  • Middle Aged
  • Multiple Sclerosis / diagnosis*
  • Multiple Sclerosis / physiopathology
  • Multiple Sclerosis / psychology*
  • Nursing Methodology Research
  • Surveys and Questionnaires
  • Truth Disclosure*