Living Fully Without a Diagnosis | Jessica Hayon | NancyTalk 8

Jessica Hayon spent more than 20 years living with a progressive disability that still does not have a definitive diagnosis. Instead of putting her life on hold while waiting for answers, she learned to adapt, build confidence, and keep moving through the unknown. In this NancyTalk, Jessica—an apparel-industry professional and adaptive athlete—shares how she went from walking, to using crutches, to becoming a full-time wheelchair user before her 13th birthday. She speaks honestly about bullying, inaccessible environments, unwanted questions from strangers, workplace assumptions, and the loneliness that can remain even after reaching major life goals. Jessica also shares the moments that expanded what she believed was possible: adapting a sewing machine so she could power it with her elbow, living independently at the Fashion Institute of Technology, traveling alone, finding Achilles International, completing marathons and triathlons, building a disability community, and advancing into a senior role in textile research and development. Her central message is not about finding every answer. It is about knowing yourself, asking for what you need, challenging your limits, and creating a life that is meaningful even when the path remains uncertain. CONTENT NOTE This talk includes discussion of progressive physical disability, bullying, ableist language, invasive medical testing, inaccessible environments, and the emotional impact of living without a diagnosis. ABOUT JESSICA HAYON Jessica Hayon is an apparel-industry professional and adaptive athlete. She works in textile research and development and has participated in handcycling races, marathons, triathlons, skiing, tennis, rock climbing, and other adaptive sports. Her story centers on independence, community, confidence, and moving forward without waiting for perfect certainty. ABOUT NANCYTALK NancyTalk shares honest, practical, and hopeful conversations about disability, independence, accessibility, rehabilitation, community, relationships, work, recreation, and building a meaningful life. NancyTalk is presented by the Nancy Lieberman Back-to-Life Center at Mount Sinai. CHAPTERS 0:00 Welcome and introduction 0:28 Jessica begins her story 0:45 A slow, unexplained physical regression 1:28 Journaling and what photographs hid 2:19 Years of specialists without a diagnosis 3:28 From walking to a wheelchair before 13 3:58 Bullying, rumors, and ableism 4:47 Accessibility needs that changed every day 5:37 Adapting a sewing machine with her elbow 6:32 FIT and learning to live independently 7:24 Choosing to stop chasing a diagnosis 7:53 Her first solo interstate trip 8:22 Unwanted questions and awkward encounters 11:00 Visible disability is not public property 11:25 Workplace assumptions and inaccessible interviews 12:44 Finding accessible housing in New York 13:25 Achievement without connection 14:00 Social barriers and inaccessible venues 14:29 The “favorite accessible stall” story 15:21 The adaptive trip that changed everything 15:50 Achilles International and handcycling 16:25 The hidden logistics of a triathlon 17:10 Finding her disability community 18:03 Confidence through athletic challenge 18:38 Career growth in the apparel industry 19:22 Returning to medical testing with her brother 21:31 Maintaining her body—not chasing a cure 21:56 The unknown can be scary, but so can the known 22:17 Audience Q&A 23:05 Confidence, assistance, and being taken seriously 24:16 Why she no longer needs a diagnosis 25:11 Becoming the workplace accessibility expert 26:14 What she would tell her younger self 27:18 Closing WATCH AND FOLLOW Subscribe to NancyTalk:    / @nancytalk   Learn about the Nancy Lieberman Back-to-Life Center: https://reports.mountsinai.org/articl... Instagram:   / back2lifenyc   Facebook:   / back2lifenyc   Threads: https://www.threads.net/@back2lifenyc X: https://x.com/Back2LifeNYC Bluesky: https://bsky.app/profile/back2lifenyc... #NancyTalk #JessicaHayon #AdaptiveAthlete