"I Didn't Know How to Be a Partner in My Own Care": Joel Nelson on Learning Self-Advocacy Late

Joel Nelson spent his childhood being discussed in his doctors’ appointments, rather than conversed with. He was ten when the joint pain started, and for the next eight years the conversations about his body happened over his head, behind a curtain, between the adults in the room. He was poked and prodded and left in pain while a plan was made without him. This inspired a deep urge to speak for himself, and to empower others to do the same. To that end, Joel is the founder of Psoriatic Disease UK, an IFPA ambassador, and the administrator of a peer support community of more than forty thousand people. He talks with Holly about the self-advocacy skill nobody handed him, what it cost to learn it in his twenties, and how he tries to hand it to the next person. Plus, in our history section, what the research says about why autoimmune disease is rising worldwide.See omnystudio.com/listener for privacy information.