Something I’ve been sitting with lately. Eighteen months since the infection that started all of this, and I still catch myself saying “I’m still recovering” when people ask. But that’s not quite honest anymore, is it. At some point, this stopped being something I was passing through and became something I was living with.
ME/CFS, POTS, the cognitive dysfunction, the crashes after I overdo it. The whole constellation. But I don’t have a clear date for when my thinking actually shifted. I’ve been logging symptoms since month three, partly to show my neuro a real picture, partly because it gave me the illusion I was doing something productive.
At some point the log stopped feeling like evidence of recovery-in-progress and started feeling like a record of a new baseline. For me it might have been around month ten, when I realised I’d stopped counting weeks since the virus. Or maybe it was the second time I cancelled a family visit because I’d misjudged my window and crashed beforehand. Or the appointment where my neuro said we’d “monitor for improvement” - which I read as him not expecting much of one.
I still find it hard to say “this is chronic” out loud, even to my GP. I work in physical therapy, I know the vocabulary, and I still soften it. “I’m not quite back to normal yet.” Which is eighteen months of not being fully honest with myself or the people treating me. Some of what I’ve read describes a grief around this - the moment you stop holding the door open for the version of yourself that was going to bounce back.
Did any of you have a specific moment where the language changed? And did naming it differently - to yourself or to someone else - actually shift how you were treated or how you felt about it?