The traditional problem for me personally is that when I’m doing a good job of ‘faking it,’ with fecking bells hanging off (oops, slipped in to Father Ted mode), I feel like I’m a downright Superman dealing with my chronic illness, but of course… people around me tend to assume that’s just me using my normal amount of energy / alertness. And that’s even coming from people who’ve known about my issues since forever.
Which amounts to a recurring problem, in which strategically-speaking, ‘faking it’ for appearances is seemingly one of the worst possible things one can do.
Loads to unpack there of course, but… you guessed it, I’m tired and need to lay down for a bit. Lucky me, because some ME/CFS-sufferers can barely make it out of bed for the most basic of needs. (“not you, Grandpa Joe!”) And its heartbreaking when that’s happening to teens & twentysomes, their young primes being wrecked by this cursed syndrome of diseases.
Reminds me of my disability evaluation where my ability to lift my arm over my head once translated to them that I’d be able to wash myself.
Not faking it would mean that my wife wouldn’t even let them see me because their mere presence could be too much for me.
These crazy hoops we jump through, just to meet the needs of public perception…
I felt utterly humiliated at times, altho it’s what the situation called for, essentially.