I think people really cannot understand the moment to moment affects this has on us. Our struggles don't always manifest optically - we don't "look" all that sick, so why don't we just suck it up and get back to work? In times like this, I've found forums like this to be very important. You can hear from people who understand you, and get little strategies you may not have thought of. But mainly, just a place (like this forum) where people DO understand, is great. Then, perhaps the help that your family *can* give, can be seen in a more generous light.
Hang in there.