Thanks so much for all your feedback, everyone. It really helps to know there are people who hear me.
I'm due to start the treatment program next week. It could be a good opportunity to meet some people who are going through similar issues. It will also be isolating in its own way because it will force my lab-times to evenings and weekends when I am less likely to see my lab-mates. Thinking of asking for a Zoom social hour every once in a while.
I've been tagging lots of books on Amazon related to living with chronic illness (managing work, relationships, etc...). Based on the tables of contents, several of them specifically address topics like grieving the loss of your previous life and the future you thought you had, as well as how illness can take a toll on your self-esteem and sense of identity. This is what I could never convince anyone to discuss with me; they kept telling me not to think that way and to just believe I will get back to my old self.
I've been trying to beat back thoughts of worthlessness. It's still difficult to let go of the implication that all I've needed to do all along is change my outlook. One therapy group leader told me that lack of optimism may be the reason previous treatment methods did not work. She didn't know my situation at all. I was optimistic for four and a half years; it was only relatively recently I could no longer maintain it, even though I tried.
I've been thinking about the propensity of some to use the "other people have it worse" approach to...to what? Is this really meant to help or is it mostly meant to shut up the other person's complaints? Because when someone tells me to use willpower to be more upbeat, less withdrawn, less focused on my own pain, more active/productive, it's hard for me not to think of the times that:
1) SO was kept awake later than usual because of some noisy neighbors (probably got around 5-6 hours, instead of his usual 8). He spent the next day groggy, grumpy, and sullen. He complained of how tired he was, how the interrupted sleep made it hard to focus. He went to bed early and felt back to normal the next day.
2) SO wrenched a muscle, which led to several days of pain, foul mood, and low activity. He wasn't interested in conversation or "together time" or anything except sitting still and being left in peace. By the next week, he had recovered, pain was gone, SO's mood back to normal.
3) Former PI came down with a head cold. Complained of lack of focus, feeling "like a zombie", making mistakes with her work. Took the next two days off and came back to lab recovered.
I can think of other people, other examples, but it all comes down to the same principle: people who don't seem to practice what they preach. They don't seem particularly optimistic (even though they have every reason to expect their discomfort to be short-lived), social, or able to function at their normal levels. Why do they expect me to be? When I haven't slept through the night in months. When I've spent years feeling like a zombie far more often than I felt like a human.
Supposing they didn't recover, and they felt that way for years, to the point their careers stalled, relationships withered, their bodies aged while their minds stagnated beneath the fatigue, pain, and disconnection from the world around them. Would they be comforting themselves thinking, "At least it's not [insert worse circumstance here]?" Would they maintain their optimism for the future? If uncertainty is a major stressor, and they had no idea when to expect to feel better, how would they fare?
I can never ask this because 1) it's pointlessly combative and 2) you can't really know how it would affect you unless you've lived it. But I wonder if, were the question(s) posed to them, they would imagine themselves as never giving in to despair, never succumbing to utter exhaustion or loneliness, and getting through by sheer determination and willpower.
Am I really so much less resilient than everyone else?
