Hi @clumsysilverdad and thanks so much for taking the time to contribute. We've found the pigeon hole scenario is firmly in place in our psyche. If you have a broken arm people know what that is, they identify the remedy and they have a firm grasp of your limitations until it's healed and how long the healing is likely to take. All nice and neat.
With the out of the box suffers, and Lyme is a great example, people don't know how to respond. This has no cure at late stages yet all people can muster is a "get well soon" statement; even those who we've told repeatedly about the lack of possibility for getting well. It's infuriating really sometimes as it dangles a carrot of wellness that we'll never know but that's not through malice, people are just in the general case myopic & compliant.
Thank you for your compassion, it's warmly received and it's comforting just to know that others share our views on being able to freely navigate the bad seas they find themselves in.