That's the toughest part of having health issues that are poorly understood. You don't get the benefit of financial support programs that others have due to the complexity and cost of the care you need, and organizations that are supposed to help people with disabilities expect you to rely on those you live with for more financial and physical support that those people shouldn't have to give. Too many people with chronic illnesses end up without what they need to survive and with no physical support because our "safety net" system overtaxes our loved ones who aren't mentally equipped to deal with those illnesses and the financial strain that they bring. Getting people to recognize that it is a problem and getting them to understand that they should want to change things because they could be in that position some day are more difficult than you would think. Glad you have someone who is there for you, and wish you luck with your attempts to improve your health. If you haven't tried it, I would look for a naturopath. You'll likely have to pay cash for anything that involves actual health care, but they are more geared towards resolving health issues rather than treating symptoms, and don't just take the lazy route and blow you off like traditional doctors that only care about getting a paycheck without being sued for malpractice rather than whether or not they are actually helping their patients. Not having to fight people every step of the way to get them to do their job will probably be less exhausting, too.