Boy do I hear you!
My guy has as an autoimmune disorder and feels the way you describe. His is vasculitis which is when the immune system thinks his blood cells are foreign and so kills them. He is left with red blotches or blood blisters everywhere. The problem is that when he covers them up or the blotches are deep so it just looks like freckles on the surface. As you can imagine, every organ in his body can be affected. The kidney (he only has one) and lungs and gut are often most hard hit, organs critical for life. Even a bout of indigestion can be frightening and a cause for concern. He feels like death warmed over 99% of the time.
But he looks good. He sleeps off and on most of the day and is up and about for 5 to 10 minutes and it’s time for another nap and oxygen. I think people think he’s faking or lazy or something. When my mother says, “Really?!” in that incredulous way, I want to smack her! But you can see, if you look closely — the smile that doesn’t reach the eyes, the sighs, stopping to “think” in the middle of an activity. He’s a big guy and has lost wgt, but not a lot, so he looks like he’s been eating what he should. But he can’t eat much because his taste has been affected. His facial color is good (that’s the oxygen and the Alabama 5 minutes in the sun tan.)
Add to this the medication that is trying to, and is, turning off his immune system. There is this constant battle in his body. Frankly, I don’t know how he, or you, or anyone else so afflicted gets out of bed. The exhaustion, the depression, the grief, the pain. Oh, and the fear.
Then someone asks, “How are you?” And you know that if you tell them, you will never see them again. Because they really don’t care or they are totally incapable of dealing with “real” hurt.
Good luck to you. I enjoy reading your articles. Sometimes I get so zeroed in on being a caregiver (with depression) that I forget about all the other people who “seem” so well, those silent sufferers….may all beings be free from suffering (whether they look like the need the “prayer” or not), may You be free from suffering.