{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,9]],"date-time":"2026-10-09T09:54:50Z","timestamp":1791539690412,"version":"4.3.4"},"reference-count":8,"publisher":"JMIR Publications Inc.","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["J Particip Med"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>This reflective article, written collaboratively by 4 people living with multiple sclerosis (MS)\u2014Johanna Hising DiFabio, Meredith O\u2019Brien, Jennifer Southard, and Danny van Leeuwen\u2014with Mary Hennings of the Society for Participatory Medicine, distills insights shared at a March 2025 event cohosted with Northeastern University\u2019s Bouv\u00e9 College of Health Sciences. The panelists speak as experts on their own lived experience, tracing the arc from diagnosis to what they call \u201coptimal living\u201d with a complex, unpredictable disease. The piece begins with the diagnostic journey itself, describing a \u201cdouble trauma\u201d: 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\u2014not just competence, but shared communication style and mutual respect for the patient\u2019s 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\u2019t 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 \u201cdon\u2019t look sick.\u201d 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\u2014that patients and clinicians grow together, with the patient retaining ownership of their own body and life.<\/jats:p>","DOI":"10.2196\/94593","type":"journal-article","created":{"date-parts":[[2026,10,9]],"date-time":"2026-10-09T09:45:33Z","timestamp":1791539133000},"page":"e94593-e94593","source":"Crossref","is-referenced-by-count":0,"title":["Living the Masterclass: Multiple Sclerosis Patient Journeys and the Reality of Participatory Medicine"],"prefix":"10.2196","volume":"18","author":[{"ORCID":"https:\/\/orcid.org\/0009-0001-8952-469X","authenticated-orcid":false,"given":"Mary","family":"Hennings","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0008-4365-2419","authenticated-orcid":false,"given":"Meredith","family":"O'Brien","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0007-3207-1371","authenticated-orcid":false,"given":"Johanna Hising","family":"DiFabio","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0007-3487-1874","authenticated-orcid":false,"given":"Jennifer","family":"Southard","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6653-5145","authenticated-orcid":false,"given":"Daniel","family":"van Leeuwen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1010","published-online":{"date-parts":[[2026,10,8]]},"reference":[{"issue":"2","key":"R1","doi-asserted-by":"publisher","DOI":"10.1177\/20552173251333390","article-title":"Diagnostic delay and misdiagnosis of symptoms reported by patients with multiple sclerosis participating in a research registry","volume":"11","author":"Solomon","journal-title":"Mult Scler J Exp Transl Clin"},{"key":"R2","unstructured":"Empowering people affected by MS to live their best lives. National Multiple Sclerosis Society. URL: https:\/\/www.nationalmssociety.org [Accessed 11-07-2026]"},{"issue":"9","key":"R3","doi-asserted-by":"publisher","first-page":"711","DOI":"10.1136\/bmjqs-2019-009830","article-title":"Coproduction: when users define quality","volume":"29","author":"Elwyn","journal-title":"BMJ Qual Saf"},{"issue":"2","key":"R4","doi-asserted-by":"publisher","first-page":"57","DOI":"10.1177\/0141076818790665","article-title":"Empathy as a state beyond feeling: a patient and clinician perspective","volume":"112","author":"Price","journal-title":"J R Soc Med"},{"key":"R5","doi-asserted-by":"publisher","DOI":"10.2196\/71610","article-title":"Patient and practitioner perspectives on the definition and measurement of therapeutic empathy: qualitative study","volume":"17","author":"Bennett-Weston","journal-title":"J Particip Med"},{"key":"R6","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.r1634","article-title":"Spetspatients are helping to reshape healthcare","volume":"390","author":"Riggare","journal-title":"BMJ"},{"issue":"1","key":"R7","doi-asserted-by":"publisher","DOI":"10.1038\/s41598-022-27247-y","article-title":"Effect of breathwork on stress and mental health: a meta-analysis of randomised-controlled trials","volume":"13","author":"Fincham","journal-title":"Sci Rep"},{"key":"R8","unstructured":"O\u2019Brien M . Uncomfortably Numb 2: An Anthology for Newly-Diagnosed MS Patients. Wyatt-MacKenzie Publishing; 2025. ISBN: 978-1954332584"}],"container-title":["Journal of Participatory Medicine"],"original-title":[],"language":"en","deposited":{"date-parts":[[2026,10,9]],"date-time":"2026-10-09T09:45:34Z","timestamp":1791539134000},"score":1,"resource":{"primary":{"URL":"https:\/\/jopm.jmir.org\/2026\/1\/e94593"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,10,8]]},"references-count":8,"URL":"https:\/\/doi.org\/10.2196\/94593","relation":{},"ISSN":["2152-7202"],"issn-type":[{"value":"2152-7202","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,10,8]]},"article-number":"v18i2e94593"}}