@santosha Thank you for this. I really resonate with the call for truly individualized care.

For a long time, my care felt “protocol-first” rather than “person-first.” I know guidelines matter, but I often wished my care team would spend more time on my actual day-to-day pattern, how I respond to specific meds, and what quality of life looks like for me beyond seizure counts. The hardest part wasn’t just symptoms, it was feeling like I had to prove my lived experience was clinically relevant.

What helped most was when a clinician treated me like a partner: clear reasoning behind decisions, willingness to adjust based on my feedback, and practical support for the real-life impact (driving limits, safety planning, work and relationships).

Curious what “individualized care” has looked like when it’s gone well for others here. As some of you might know, I've pivoted my life to try to communicate to doctors that we are sovereigns in our healthcare, not just subjects. Sadly, it feels that the providers don't really know us and the reality of the challenges we face and the impact it has on our lives. We are often just looking for empathy, in addition to excellent care.