The impact of multiple sclerosis on the identity of mothers in Italy

Abstract

Purpose: This paper reports on one of the themes that emerged from the analysis of the study, regarding the perceived influence of multiple sclerosis (MS) on the identity of mothers in the socio-cultural context of Italy.

Method: In-depth interviews were conducted with 16 women at various stages of MS, with follow up interviews with seven of the women. Phenomenology guided the methodology and the analysis was conducted using interpretative phenomenological analysis.

Results: Through the research the value of motherhood to the women who participated emerged. The findings illustrated how many strove to maintain control of their MS, which led to some making comparisons of themselves and other mothers and feeling different. Some women described how they adjusted their roles and found strength in being mothers but others spoke of their feelings of loss. Most women described living in the moment, appreciating the present and living each day as it came. Another significant experience was fear of stigma, both realized in the form of “pity” from others, and the perceived and actual associated stigma for their families. This contributed to why some women were reluctant to disclose their condition. The mothers who took part in this study differed in how they perceived their disabled identity.

Conclusion: Although this study was conducted in the socio-cultural setting of Italy, the findings have implications for professionals working with disabled mothers and women with MS in Italy and beyond; including recognizing the value associated with fully identifying oneself as a mother, rather than solely focusing on doing mothering tasks.

Implications for Rehabilitation

• Professionals need to be mindful of the value of motherhood for women with multiple sclerosis.

• Professionals should support women who feel like they are battling with maintaining control of their multiple sclerosis, who may be adjusting their identity as mothers; recognizing that they may be influenced by the stage of their multiple sclerosis and whether they were diagnosed before or after having their children.

• Women can have feelings of loss related to their ability to fully participate in their children’s lives and professionals should work with women to help them identify the value of their mothering role not only in physically participating in activities but also in being emotionally and physically present as a mother.

Keywords:

• Multiple sclerosis
• motherhood
• identity
• Italy
• qualitative
• self

Acknowledgements

Participant recruitment was facilitated by the Italian MS Society. Marina Usai assisted with the conduct of the interviews. Tamara Reiter transcribed and translated the interviews.

Above all the research team express their thanks to the study participants, for willingly giving up their time and sharing their stories.

Disclosure statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Additional information

Funding

This research study was financially supported by a fellowship from the Fondazione Italiana Sclerosi Multipla, Genoa, Italy.