Mothering young children

Mothering young children – challenging, yet beneficial Astrid Plumb-Parlevliet Children in their early childhood years place a high physical demand on their mothers and as a result these mothers are predominantly preoccupied with tasks related to their young children. Mothers with multiple sclerosis can have limited physical and emotional capacity. It is important for these mums to maintain their energy. This study looked at the experiences of mothers with multiple sclerosis, who had at least one child in their early childhood years. Ten mothers, all with relapsing-remitting multiple sclerosis, participated in this qualitative study; four major themes and eight sub-themes were uncovered. Theme • Changing life perspective • Balancing life with MS • Having children • Peer contact Sub-themes • Avoidance • Seize the day • Conserve energy • Support network • Pregnancy decision • Dealing with motherhood • Feeling judged • Sense of belonging These themes are a reflection of all of the study’s interviews combined. It tells the overall story of living with multiple sclerosis as a mother of young children. Theme 1: Changing Life Perspective After being diagnosed with MS, people go through a change in life perspective. Initially the participants tried to avoid thinking and dealing with their MS diagnosis. MS is an unpredictable illness and therefore avoidance assists in maintaining emotional well-being. Avoidance has been found to be an acceptable coping strategy whilst MS has a mild influence on life. Many of the participants avoided their MS diagnosis by not disclosing their illness to others and/or by avoiding the MS Society. MS is still in the back of their mind; nevertheless, it is not actively present in daily life. After a while life with MS is accepted and the focus in life is changed to make life worthwhile. It is important to seize the day. By not dwelling on MS, by living consciously whilst making informed choices, and by doing things for themselves, the participants showed the importance of seizing the day. Changing their life perspective assisted them to stay mentally strong and hopefully this will assist them in staying physically strong as well. Theme 2: Balancing Life with MS Staying physically strong is important for people with MS. Impaired physical functioning has a major impact on life and this impact needs to be dealt with appropriately. Additionally, stressful events increase the probability of relapse and therefore need to be kept to a minimum. Consequently, balancing is an important part of life for people with MS. The participants talked about the importance of conserving their energy and having a support network available for balancing life with MS. It was hard to manage and conserve energy, however, most of the participants tried to limit the number of activities they engaged in. Most support was provided by the partner of the participants. Yet other people stepped in when the partner could not cope. Theme 3: Having Children MS symptoms can lead to physical and emotional coping difficulties, which influence the motherhood experience. The participants shared their experiences of having children. They talked about the decision to become pregnant and how they experience dealing with motherhood. Some of the participants were already mothers when they were diagnosed with MS. For the ones that did not yet have children before being diagnosed, it sped up the decision to have children. However, most reduced the number of children they originally wanted. 20 Summer 2015 The MS Society of Western Australia

While many of the participants chose to become pregnant after their MS diagnosis, they found it hard to deal with MS and motherhood tasks, as MS affected their ability to mother. Planning was important to combat physical issues and fatigue. Activities had to be put in place to occupy the children when the mother did not feel well; however, it was not always achievable. The experience of motherhood was influenced more by the severity of MS than by the number of children. Mothers were not able to look after their children when they were experiencing new symptoms due to a relapse or when old symptoms briefly resurfaced. Fatigue also played a part in their ability to be a mother. During these times, being a mother of young children was hard as the children were not able to understand their mother’s illness and still required attention. The mothers with one child, when severely affected by their illness, were found to struggle more compared to mildly affected mothers with a number of young children. Nevertheless, being a mother enriched and provided purpose to the participants’ lives. Children kept their mother’s mind off MS as they were too busy looking after their children. As long as there is adequate support available during illness complications and life with MS is properly balanced, the psychological benefits of being a parent of a young child could outweigh the physical demands. Being a mother could therefore be beneficial to people with MS. Theme 4: Peer Contact The participants considered contact with peers important. The participants relayed their feelings of being judged by the community and occasionally by friends. All participants relayed that it was easier to relate to other people with MS. It gave them a sense of belonging and reduced their loneliness. Furthermore, it could prevent them from comparing themselves to the ideal mother and thereby reduce stress. By facilitating more contact between peers, people with MS may be able to better their mental health. Research Conclusions The findings indicated that a change in life perspective was initially difficult for women with MS, yet necessary for their psychological well-being. They had to be able to balance life with a debilitating chronic illness in order to stay physically and mentally strong. Mostly they required support from family members to assist them with this. Having children brought physical difficulties; however, it assisted them in staying mentally strong. A reason also considered whilst making the decision to have children. To combat the feeling of loneliness, contact with peers was considered to be normalising. Changing their life perspective, adequately balancing life and MS, having children and peer contact assisted these women in their pursuit to live contently despite MS. Hereby I would like to thank all the mothers who participated in this study. I am honoured that you were willing to share your experiences with me. Thank you for your time, especially because life as a mother who has MS and young children is already hectic enough. It was incredible to hear your stories. Your experiences encouraged me. I would also like to thank Sue Shapland, Louise Hatter and Lisa Papas from The Multiple Sclerosis Society of Western Australia (Inc). Thank you for assisting me with participant recruitment. Without your support I would not have been able to undertake this study. Your support for people with MS is inspirational. This study was undertaken as a requirement for the course of Bachelor of Arts (Psychology) Honours at the Faculty of Health, Engineering and Science of Edith Cowan University. MSWA Nurse Marisa Pinerio retires It is with mixed emotions that I announce that our young at heart Marisa Pinerio retired in November and is now free to amble down the path of being a grandmother and retiree! Marisa has been an amazing part of the MSWA Nursing Team for 10 years. She brought so much laughter and fun to us all, not only in the nursing team, but in our MS Family. Her wealth of knowledge, compassion and understanding benefited so many people affected by MS and those working in the area of MS in Australia. Her passion for supporting and mentoring her peers, and being there for all, will be missed. We hope that she will now put that abundance of energy into enjoying the next stage of her life. Please join me in wishing her all the best. Sue Shapland The MS Society of Western Australia Summer 2015 21