Journey to Diagnosis with Lisa Sherman

Zebra Talks: Living Your Best Bendy Life

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.