Multiple sclerosis (MS) is a chronic, neurological disease with a course that varies and a prognosis that is uncertain. In a doctoral thesis at Luleå University of Technology, where 25 women with MS were interviewed, a clear picture emerges. Knowledge about their experiences of living with the illness requires to make health care personalized.
- The women who I asked would like to have time and opportunity to express grief and vulnerability in contact with health services. They also expect a response based on their individual situation and needs, "said Malin Olsson, Ph.D. at Luleå University of Technology.
The purpose of Malin Olsson's research is to describe women's experience of living with MS: She has interviewed 25 women with MS, focusing on their daily lives, experiences of extreme tiredness, treatment and their experiences of feeling well. The illness MS means a big change for the women affected, according to Malin Olsson,
- It's about to go from being healthy and independent to being dependent on others to meet the basic needs of daily life, "she says.
The study shows that woman's experiences of changing relationships between one's own body, self and the outside world is the knowledge needed to identify the individual experiences of women living with MS. This in turn is a precondition for the health care system to be able to communicate on the conditions of women and understand their situation.
Malin Olsson also shows in her research that women living with MS in today's individualistic society are more likely than before at greater risk to be discriminated in their everyday lives.
- To not feel equal and involved in a community with others is in itself exclusion, "she says.
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