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.
