That must be terrifying, and my heart goes out to both of you. I'm very sorry it came to the point where it seems there is nothing to be done and the best you can do is keep the pain private. Are you part of a mutual support group or some other network for chronic pain sufferers? I think it may be healthier to have people you can be heard by and empathized with, and perhaps they should be people who understand (some of) what you're going through and won't feel saddened by or responsible for your condition.