Support Group Stuck: Living with multiple complex cconditions

I find myself stuck.

After a decade of chronic illnesses slowly dismantling my life, and the last three years keeping me more in my regional speciality/academic medical hub than at home, I’ve had three major surgeries and more “minor” procedures, scans, tests, and transfusions than I would care to remember.

I’m home, rebuilding my physical, relational, and mental health. On disability for the moment, trying to determine what comes next at 44 and piece together how this new “custom” body feels, and how I feel about everything now that I’m not fighting every moment to stay alive. I talk to the nice people at mental health who are trying so hard but have little idea what to do with me (it’s very rural mental health and we’re lucky to have as much as we do), and attend online support groups where I carefully maneuver to share last so no one has to go after me—even when I never share everything. Because there are liver groups, transplant groups, new job groups, etc. but none that I’ve found that address what happens when you cross all these lines and you’re always the “special” one at whatever group you attend. So you end up educating, answering questions, helping others feel better about their road ahead, but leaving knowing you helped, but no one understood you.

So I wonder if hidden somewhere there is a group for complex patients who are taking the day off educating and answering questions—as wonderful as that is to do—and are instead listening to each other?

Any resources welcomed.