Living with a rare disease means having to face doctors who don’t believe you, regardless of the evidence of suffering , partners who become carers- gradually or suddenly, and the world’s obsession with labels. In this episode I talk about the importance but also -coexisting- unimportance of diagnoses, the role of mental health in chronic illness, and what it means to exist outside the “being- and having to be inspirational” narrative.
Covering:
1. A brief introduction
2. The Online Debate: Who’s “Disabled Enough”?
3. Living the In-Between. Looking to well to be disabled but to disabled to be well.
4. Medicine & Misbelief, struggles with rare diseases — lack of cure or treatment.
5. Personal & Social Dynamics: How relationships shift: partners becoming carers.
6. Rethinking Narratives: Why “inspirational” framing flattens lived experience.