First secure your own mask, then help those around you with theirs. In sum, interactions with the outside world can be challenging when you are dealing with chronic pain and fatigue. To preserve energy for the things most important to you, eliminate all superfluous tasks and unpleasant social activity. For those activities we choose to do, always come prepared. When we desire assistance from others, ask politely and clearly, explaining that they are saving us a great deal of pain and we are very grateful.
People like to feel appreciated.
When this approach is unsuccessful, there are several options. We may decide to rule out future interactions of this sort when possible. We can calculate whether the extra pain is worth it. We are the toughest group around. But playing the martyr entails huge costs and can be done only so much.