JMIR Publications

This reflective article, written collaboratively by 4 people living with multiple sclerosis (MS)—Johanna Hising DiFabio, Meredith O’Brien, Jennifer Southard, and Danny van Leeuwen—with Mary Hennings of the Society for Participatory Medicine, distills insights shared at a March 2025 event cohosted with Northeastern University’s Bouvé College of Health Sciences. The panelists speak as experts on their own lived experience, tracing the arc from diagnosis to what they call “optimal living” with a complex, unpredictable disease. The piece begins with the diagnostic journey itself, describing a “double trauma”: the anguish of unexplained physical decline before diagnosis, followed by the weight of confronting a confirmed chronic illness. The authors argue that how clinicians deliver and support a diagnosis determines whether patients end up isolated or drawn into genuine partnership with their care team. A central theme is the search for the right clinician fit—not just competence, but shared communication style and mutual respect for the patient’s expertise in their own life. The authors describe practices that support this, such as setting the visit agenda in advance through patient portals, and stress that patient engagement styles vary: some patients want deep involvement in research, while others prefer to delegate, but all need a clinician who genuinely listens. The article expands the notion of a care team beyond medical clinicians, describing three layers: the medical core, a complementary team (bodywork, movement, nutrition specialists), and a personal network of family and friends providing emotional support. It also names systemic frictions, like patients having to relay information among clinical specialists who don’t communicate with each other. A recurring message is resisting being reduced to the disease. The authors describe both the comfort and sting of comments like being told they “don’t look sick.” They also share personal strategies for preserving identity and quality of life, from adapting a musical instrument to accommodate physical limitations, to writing and publishing patient narratives, to using organizational resources like the National MS Society to navigate research and advocacy. The article closes with practical counsel for newly diagnosed patients: stay engaged, insist on true clinical partnership, build a broad support ecosystem, and protect the personal choices that give life meaning. It affirms the core principle of participatory medicine—that patients and clinicians grow together, with the patient retaining ownership of their own body and life.