Lynn

Caregivers Only Support Group

Greetings, I have a long history as a health advocate and educator yet had absolutely no experience, no clue, about autoimmune encephalitis (AE) until my partner, Sharon, experienced everyday life unraveling in 2018. Her treatment journey: a year of diagnostics, a year of infusions, then more years of healing slowly— becoming a new Sharon in the process.

We’re both retired now and active with exercise and meditation, healthy eating, good sleep, and creating meaningful community relationships. Sharon has a good team of doctors, and I have tried my best through these years to advocate for her, negotiate, question, and communicate when Sharon could not speak for herself.

Our focus now is staying present, welcoming each moment whatever comes, caring for ourselves, each other. AEA support groups have provided a space to connect—around this collection of serious illnesses that most people have never heard of and that AE research is still defining—creating together these special, online moments benefitting from our shared experiences, exploring resources, and gaining new perspectives across the miles.