Thread by @LGlaucomflecken

The term “caregiver”needs work. It’s a hospital-centered term, by way of the patient. It describes the caregiver’s *work* in relation to *someone else.* It ignores the real and myriad ways the caregiver lives with and is affected by the disease daily. 🧵 1/8

Ironically, the term #caregiver completely ignores the caregivers themselves. Yes, the patient’s needs should be centered by the medical team. Yes, caregivers should be acknowledged as important members of that team. But… 2/8

…many caregivers’ mental and physical health is directly affected by the very same disease, condition, diagnosis, etc. What of their needs? Why is the #healthcare system at large ignorant of the treatment *they* need? 3/8

Family members, spouses, parents, children, and loved ones are not hired help. They are caregivers, yes, but they are more than that. Caregivers are often patients in their own right. 4/8

The patient’s circumstances deeply affect their loved ones. Their lives are often changed forever, with trauma, anxiety, depression, exhaustion, shock, burnout, physical injury, among many others. So why does the term - and therefore the healthcare system - not reflect that? 5/8

The term has never felt complete and accurate to me. So, what would be a better term? What would better encapsulate the variety and many layers of the true experience? It’s a genuine question that I’ve been trying to answer for years. 6/8

My favorite so far is “forgotten patient” (and likewise “co-patient”/“co-survivor”). linkinghub.elsevier.com/retrieve/pii/S… That feels true on this end. I suspect the healthcare system takes issue with it. But language affects treatment. Labels should center those to which they are applied. 7/8

.#medtwitter, patients, and caregivers, I’d love your thoughts. 8/8

cc @robmentz @dranulala @JCardFail @PSnobelen @BenjaminAbella @WellspouseOrg @CaregiverAction @CaregiverAlly @NA4Caregiving @theCGspace @matthewjdouma