BLOGS
The nursery light casts soft shadows across my daughter's sleeping face as I sit here, my body humming with familiar pain while my mind navigates territories I thought I'd mapped during years of PTSD therapy. But this is different. The hypervigilance I knew from before has transformed into something new – a different kind of overwhelming awareness, not of danger, but of a responsibility so profound it takes my breath away.
Continue readingWe live in the liminal spaces between sickness and wellness, between the body we remember and the body we inhabit. Chronic illness is not a destination but a country with shifting borders, where the landscape changes without warning and the maps we carried into this territory become obsolete with each passing season.
Continue readingEmpathy is a profound human experience that connects us to others. When we feel empathy, we step into another's shoes and see the world through their eyes. We share in their suffering, joy, hopes and struggles. Empathy allows us to understand experiences that are not our own. It is both an emotional response and a skill that can be honed.
Continue readingYou design for us, but our voices are often just an afterthought – a regulatory obligation, not a design imperative. But we, the patients and our caregivers, are vital. We are experts in our own lived experience – a goldmine of data for you to use. Pharma has proven the ROI of patient involvement; they see better retention and market access.
Continue readingThe journey through chronic illness is fraught with countless difficult decisions, but perhaps none is more paradoxical than the choice many patients eventually face: do I dedicate myself fully to my own recovery, or do I continue advocating for others like me? This seemingly impossible dilemma forces individuals to confront fundamental questions about purpose, healing, and the sometimes contradictory nature of patient advocacy work.
Continue readingHealthcare organizations exist to serve patients, yet the patient experience and patient advocacy are often an afterthought. As healthcare focuses intensely on revenues, regulations, and payer relationships, individual patients can feel lost in a system not designed to meet their needs. Every healthcare organization should appoint a Chief Patient Officer or Patient-in-Residence to champion the patient's voice and advocate for their needs.
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