Find ways to manage your disease, not to cure it, just to take the "edge" off it.
Accept that you will likely never get better. If you don't accept this, your disease will play with your emotions, you will constantly grasping for what you can't have, you will constantly be getting your hopes up. If you think you will never get better, then slight improvements will feel great, getting a bit worse wouldn't feel that bad either because it is within expectations.
If you love people, use that as a reason to keep going, you don't want to hurt them. Love is there to show us how much we can endure. You may feel like you are suffering and getting worse and worse, but if you find a reason that you can't die, humans can be surprisingly resilient to extreme suffering. Just most people do not have a reason.
Of course I don't want to marginalize anyone's suffering, it is up to them to make the decision of life and death.
I have CFS and am stuck in bed 23 hours a day. I am constantly feeling terrible and have no energy, sore muscles etc. The suffering is unrelenting. But both my dad and mom would be broken if I died. My brother is just starting his career and is in a very tenuous situation. If I died his whole future would probably change for the worse. I can't die, even if I get much worse and have to experience infinite suffering, I can't die. Of course this is my resolve now, maybe I'l think differently if that actually happens. I don't know.