I feel you. I think my family still treats me and my disease relatively well, compared to some of the stories I saw in my own ME/CFS group. They never disbelieved me for example or told me to just get myself together or thought the problem to be psychological.
But it doesn't really go beyond that. Their attitude is mostly "yes, yes, we understand, you are ill and cannot exert yourself too much". So in words it is fine, but their actions tell a different story. They tell me to do things that are important and must be done right now, even though they are not actually that important. And I told them a million times not to expect me to just jump up to do things they ask from me last minute, without any prior warning, because that is very difficult for me, especially if I have a bad day. I need to be able to do things on my own schedule and it is the disease that dictates it, not me or anyone else. But it also took them a long time to understand that I also cannot make definite plans far ahead in time because I have no idea how I'll feel.
The other thing is that I usually tell them when I have a bad day so they know. I tell my mom not to stress me on those days and also not to talk for very long to me (on the phone) because my cognitive bandwidth is really tiny and it only takes a minute or so for my brain to feel it is melting down on those days. Especially not to tell me important things I'm supposed to remember because I'll probably remember very little of those. I usually tell her to always send me the important things in an email.
All these instructions get ignored routinely unfortunately. There have been multiple instances when I told my mom if she ignores my requests like this, especially on my bad days, I'll just won't talk to her after a while because I don't really have a choice if I want to preserve my health and sanity. It is really horrible for me when I say "mom, I cannot pay attention anymore, my brain is not capable of more, please stop talking". And then she just keeps going and going and I just hang up because what else can I do.
But to answer your question: the fact that my family can actually pay attention to these things became obvious to me when my sister was trying to conceive artificially and was taking some medication for this. She told us not to stress her at all because it can be very dangerous and I remember she told me this starting with "just so you understand" and I remember how bad that felt. I mean my whole life has been like this for years, I've explained it to them many times, sent them videos about the "battery" analogy etc. And it was still me somehow who this needed to be explained to.
And my family really took it seriously in her case, a lot more than in mine and tried to make her life as stress/exertion-free as possible. And I was still in the same "yes, she is ill but she can also endure these things" box. That was hard to take. So I do think that unless you have a family who has an extremely good understanding of the disease (which they may not even if they have the best intentions), then it is mostly the community, other pwME who will give you support.
