In case you, your loved one, or your entire patient-family have been harmed, shocked, or merely flummoxed as a result of your interaction with or immersion into the medical system; if you’re wondering if you’re nuts, or how crazy you might be; if you’re doubting yourself and your perceptions, or the meaning you make of events you’ve endured—this blog entry exists to tell you that you are not nuts and you are not alone.
Every citizen-turned-patient advocate or activist has had the exact same experience as you. That’s hundreds, maybe thousands, of active citizens throughout the United States and in other countries around the world (notably, that I’m aware of, in Canada, England, and New Zealand).
During the events forming the nucleus of our emergent advocacy, we can’t believe what is happening and we can’t believe what’s not happening. Eventually we learn, through many conversations, that our experiences represent a norm.
Learning this is both a relief and a burden. It’s the comfort, and the terror, to quote Ian Schoales of San Francisco’s now-defunct Duck’s Breath Mystery Theatre and acerbic social commentator. It’s a relief and a comfort to know we’re not crazy or alone. It’s a burden and a terror to realize that our experiences are just another link in an ongoing chain—the banality of harm.
In my world-view and experience, harm is both clinical and existential. Thus my definition of harm is more expansive than how the term is used by medicine.
So, whatever your details (and there are a zillion variables and variations), your state of harm, past and present, is shared. You have company, and we are working to do something about it. So are a range of providers, groups, and institutions. It will take time. We are gaining traction.
Welcome. We’re sorry you’re here, and we’re glad you’re joining us.