Like any relationship, a patient-doctor one has rules about how to engage and communicate. They’re typically in writing, bearing the patient’s signature of agreement. I’ve seen the rules posted on walls as the U.S. Patient Bill of Rights and Responsibilities, but there are also unspoken rules around trust and admiration.
Celebrate With Me — Candace Semien
Lupus is not a butterfly experience for Candace J. Semien. It is a continuous wolf attack. She lives with lupus and Sjogren’s syndrome — which, she says, are not badges of survivor honor but a harsh reality. She infuses diversity into the growing lupus awareness and advocacy megaphone.
A journalist by nature, she pulls and prods for ways to live purposefully while having limited abilities and dis-abilities. Through this column, Candace asks hard questions about lupus and shares answers that will improve the lives of people living with chronic, autoimmune diseases while encouraging honest and bold patient-family-doctor relationships.
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Where were you when you were told you had lupus? Who gave you the official diagnosis? Confirming lupus is a challenge, not only because it seems to be a mystery to primary care physicians and specialists, but also because of the testing structure, insurance requirements, and even access limitations.
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