For over seven years, I’ve been forced into the role of “my own best advocate.” This is because the people I turned to for care refused to understand what I need for recovery from severe Complex PTSD and quadrilateral Complex Regional Pain Syndrome (CRPS), alongside other chronic conditions that are symptoms of a dysregulated nervous system. That put me on a yo-yo recovery trajectory. For years, I lived on the whipsaw of hell.
What I most need is not complicated: safe connection, trustworthiness, attunement, verification of my strengths, empathetic listening, and compassion. These are the foundations of human regulation and healing. Yet time after time, my practitioners miss the point and end up doing more harm.
I’ve printed out studies and peer-reviewed papers. I’ve made handouts and graphics, tracked biodata with apps and laid it out in spreadsheets and timelines. I’ve shown them the evidence. Still, most of the time, it doesn’t click. They don’t get it. They don’t believe me. They don’t even believe the science that is right in front of them.
Being stuck in this cycle has profound effects on my system. When one already lives with trauma, pain, and exhaustion, being dismissed or disbelieved drives the nervous system deeper into survival states. Each invalidation keeps my body on high alert, reinforcing hypervigilance. Instead of finding relief, I’m forced to keep climbing the same hill again and again, burning through what little energy I have to advocate, explain, prove, and defend.
The toll is heavy. It means my system is rarely allowed to feel safe. My body carries the constant strain of chronic conditions, as well as the impact of disbelief and neglect from the people I ask for help. The effort of trying to be heard becomes another layer of trauma.
Recovery requires space for safety, regulation, and trust to grow. But how can that happen when the people charged with helping me can’t provide those conditions? When they insist on pathologizing, medicating, or denying my lived experience in this body instead of simply offering the connection that human biology requires? This is a professional and human failure. It leaves me and countless others to carry our suffering unsupported, bearing the weight of a disease management industry that refuses to recognize what healing requires.
This is negligence passed off as care. It’s an industry that insists it knows better than the people it harms. For seven years, I’ve been climbing the same hill, bearing the strain of my symptoms and the blindness of a system that refuses to recognize basic human biological needs. And until that changes, every claim about “treatment” or “progress” is an empty promise built on my suffering.
