Facing Uncertainty, Proceeding with Caution, Living with Joy: Women with Multiple Sclerosis and the Motherhood Decision

Multiple sclerosis is a degenerative neurological disorder, affecting approximately 250,000-350,000 persons in the United States. Women are diagnosed twice as frequently as men, with the majority of those diagnoses occurring during their childbearing (typically between the ages of 20 and 40) years. For women with multiple sclerosis, the decision to bear children is complicated by numerous factors. First, conventional cultural images of motherhood rarely acknowledge women with disability of any kind as fit mothers. For a disabled woman to pursue motherhood often means confronting predominant ideals and frequently having to justify her decision. Second, multiple sclerosis has proven to be an enduring mystery to medical researchers. Discovered over 130 years ago, no causative agent has been identified and current treatments can merely slow the progression of the disease. Because the disease is unpredictable and there is no way of knowing the rate of disease progression, women must evaluate their current level of disability at the time they consider pregnancy and try their best to envision what their future may hold. Other complications include difficulty in accessing healthcare providers that are well-trained in the management of pregnancy and multiple sclerosis, and the limited availability of social programs and services to support mothers with multiple sclerosis. Despite these considerable challenges, women with multiple sclerosis employ strategic, adaptive approaches to their disease. Pregnancy and parenting that enable them to effectively fulfill the role of mother