Items Tagged ‘Ehlers-Danlos Syndrome’

November 16, 2018

The Art of Slowness: The Abstract and Concrete in Chronic Illness – Experts by Experience

By kozachek kozachek

The desire to have control over one’s environment, and to have access to the fruits of life and labor, burns consistently in every heart. In the face of health adversity, realistically evaluating your ability, and pacing accordingly, is my best approach to achieve success. But this can be a challenge within our cultural paradigm of […]

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Tags: Ehlers-Danlos Syndrome


May 18, 2018

Redefining My Life’s Purpose…in a Recliner – Experts by Experience

By Shani Weber shaniweberehlersdanlossociety

Ever since I was a young girl I knew I wanted to be an Early Childhood Special Education teacher. My self-identity was being a teacher and my purpose was teaching. My life was going as planned—until it wasn’t. Joint pain and dislocations became more frequent, I worked fewer and fewer hours, and my focus shifted […]

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Tags: Ehlers-Danlos Syndrome, experts by experience, patient advocacy


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