I don't know if it helps you, but I have a widely unknown DX, even my care team have not experienced anyone with this dx, so I know how you feel about no one being able to help/understand you. i found that doing a lot of research myself and being willing to share both the research and my experiences/what I find helps me etc helps others to better understand my needs/concerns and offer better advice/support to me.
sometimes you can't educate the nation, but you can inform a few. talk to a few people you trust one at a time, explain clearly your needs/concerns and what you would like from them in terms of support, you may find that people do not know how to help you, but by spelling out clearly how they can it makes it easier for them to do so.