In this episode, Libby talks with Lisa Sherman about the long journey to diagnosis that many people with HSD/hEDS undertake. They explore barriers to diagnosis, the pros and cons of diagnosis, why the medical system hasn’t done a great job identifying and treating this patient population, and how things might be changing. Some key points discussed in this episode: How Lisa began her journey of specializing in the treatment of people with hypermobility syndromes How Libby and Lisa started collaborating through their personal and professional overlaps How common hypermobility syndromes are currently diagnosed The nature of the HSD/hEDS “spectrum” as a spectrum of variety, in addition to severity The history and limitations of the Beighton Scale as an assessment for generalized hypermobility The imperfect nature of current diagnostic criteria and how the diagnostic landscape is evolving Why HSD/hEDS present a confusing clinical picture for many medical practitioners Some systemic barriers within the medical system that prevent early diagnosis and treatment for this patient population The unfortunate experience of medical gaslighting A silver lining of the covid crisis for people with complex chronic conditions What it’s like wandering in the wasteland of non-diagnosis Why medical appointments are often so anxiety-provoking for bendy people The validation and empowered action that can stem from diagnosis How having a clear diagnosis can help reduce anxiety and support nervous system regulation The overwhelm that can stem from diagnosis How a good working hypothesis can be just as good as a diagnosis for some people How focusing on the basic pillars of overall health is always a good place to start -- appropriate movement, nervous system regulation, nutrition, and sleep.

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