Navigating the Unknown: A Qualitative Exploration of the Lived Experiences of People With Multiple Sclerosis During Pregnancy

Background: People with multiple sclerosis (MS) face challenges in family planning and pregnancy due to the unpredictable nature of the disease and a lack of clear guidelines for approaching pregnancy-related care. The objective of this qualitative study was to explore the pregnancy experiences of people with MS, focusing on uncertainty and mental health. Methods: Semistructured interviews were conducted at the Duke Neurological Disorders Clinic (N = 10). Thematic analysis was conducted inductively to identify main themes. Results: Participants, aged 26 to 40 years, had a range of 1 to 12 years since MS diagnosis and an average of 2 pregnancies and 1.3 children per participant. Three main types of uncertainty were identified: (1) anticipation of the future (relapses, impact of MS on motherhood, health care factors); (2) experienced symptoms (differentiating MS from pregnancy, role of MS in peripartum challenges); and (3) availability of information (insufficient research, provider counseling, external support). These uncertainties negatively impacted mental health, with most participants reporting mental health challenges (n = 7, 70%) and utilizing mental health resources (n = 8, 80%), including talk therapy, psychiatric medications, and support groups. Conclusions: People with MS experience disease-related uncertainty during and around pregnancy. This study highlights the need for proactive counseling on medication safety, lactation, risks of infertility, and pregnancy complications. We also identify a need to address uncertainty and its impacts on the mental health of pregnant people with MS. Clear provider recommendations, timely communication, enhanced mental health screening, and augmented social support are likely to be beneficial in this setting.