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Keywords:

  • multiple sclerosis;
  • lived experience;
  • women;
  • fatigue;
  • phenomenological hermeneutic interpretation;
  • Ricoeur;
  • nursing

Aim.  This paper reports the findings of a study that aimed to elucidate the meaning of fatigue for women with multiple sclerosis (MS).

Background.  Living with chronic illness can involve giving up usual activities. MS is a chronic autoimmune disease of the central nervous system. Fatigue is a common experience among people with MS; however, little is known about the meaning of fatigue experienced by women with this condition.

Method.  Ten women with MS were interviewed about their experience of fatigue. A phenomenological hermeneutic method influenced by Ricoeur was used to interpret the transcribed interviews.

Findings.  The findings were presented in two major themes with five subthemes; experiencing the body as a barrier and experiencing a different absence. Fatigue seemed to give rise to an experience of being absent and divided into two parts. This also led to a feeling of not being able to participate in the surrounding world. The feeling of being an outsider and lacking the ability as a healthy person is interpreted as a form of suffering. Although the fatigue had a great impact on the women's daily life, the women still hoped for some relief. Fatigue seemed to imply that instead of working as an implement to manage in the world the body has become an enemy of survival.

Conclusion.  This study highlights the importance for nurses of understanding how women with MS experience fatigue, which is a prerequisite for communication based on a shared understanding. This awareness would enhance nurses’ opportunities to alleviate suffering. More research is needed to investigate what kinds of interventions can help these women to manage their everyday lives and to maintain a sense of normality despite their fatigue and illness. Such interventions should be subject to empirical evaluation research.