My biggest advice: PROTECT YOURSELF.
You’re going to have a find the strength inside yourself to divorce yourself from the expectations of others. Easier said than done, I know.
I don’t have polyneuropathy but I do have chronic migraines, lymph edema in my left arm (so I can’t lift anything with that arm, really) and nerve damage in my face. They all involve chronic pain and none of them can’t be “walked off” or “pushed through.”
When any them are bothering me, the more I do, the worse it gets. So, when things are starting to go south, I stop. Period. Do not pass go, do not collect $200, do not care what anyone else says or thinks. Those people are not living in my body with my pain. Their expectations can’t be mine.
Living with a chronic condition, especially a rare one, means you have to protect yourself and do what’s best for you, not best for what others think. It’s actually easier then it sounds and can done without being combative about it (well, except for me when I have a migraine and lots of what I like to call “free floating rage on a hair trigger”).
Be straight with people. Tell them point blank what can and can’t happen in your world then stick to it. Often they simply don’t understand what you’re dealing with on a regularly basis. Tell them.