18 months in, the mental cost of 'normal' tests

Health & Wellness Neurologic
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hit the 18 month mark a little while ago and it really kinda drove home how much this illness messes with your head, not just your body. i think i mentioned this before in my being told it was anxiety post, but that was just the start of it. i deleted a hiking trip from my calendar around month 15. that was the actual pivot for me.

not a doc appt, not a test result. just realizing i couldn’t even pretend to reschedule it. that’s when the shift happened from ‘recovery’ to ‘this is just how it is now’. and that mental shift is heavy.

my neurologist ran the full panel, mri, spinal tap, metabolic work. everything. came back clean. and that’s its own kind of damage.

when your body is screaming at you - can’t stand for six minutes without HR spiking, cognition going offline - but the official papers say ‘nothing wrong here’, it messes with your ability to trust what your body is even telling you. it’s like you absorb enough of that dismissal and you start gaslighting yourself. is it really this bad? am i just looking for something?

it’s not depression in the typical sense, though i’m sure that’s in the mix too. it’s more the erosion of identity. i was a physical therapist. i spent years teaching patients energy conservation, pacing.

i knew the rules cold. and now i’m the one blowing past my window, ending up on the floor, trying to piece together what happened. the irony of that is brutal. the cognitive piece is what really ended my career.

the fatigue i could modify around. orthostatic stuff i could adapt. but when you can’t remember patient names mid-session, you can’t do the job. the grief from losing that identity, that’s a different animal than the grief of the illness itself.

it ambushes you. i’ll reach for my work bag out of pure muscle memory sometimes, then remember there’s nowhere to take it anymore. it’s this constant background hum of ‘i know better, so why am i still here?’ and the system telling you ‘it’s nothing, really’. how do you guys deal with that specific type of mental grind?

the one where your own experience is constantly being invalidated by the very people who are supposed to help?

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that feeling of “your body is screaming at you” while the official papers say ‘nothing wrong here’ is incredibly isolating, and it’s definitely an erosion of trust, not just identity. Often what gets missed is how much the ‘normal’ test parameters can miss issues that are still profoundly affecting function. The system isn’t always set

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funny how a “clean” mri or spinal tap just confirms the tests themselves are missing the actual picture. feels like a setup for that internal gaslighting you mentioned.

2 Likes
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that invalidation piece. brutal.

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The way you described the cognitive fallout, that “erosion of identity,” really hit home. It’s one thing when the physical stuff means you can’t keep up, but losing the you that knew how to manage it all, that’s a whole other level of brutal. I understand the feeling of your own experience being dismissed by the medical system; it’s like they’re looking at a different person on paper than the one you know you are. My neurologist keeps saying my MRI lesion load is stable, which is technically good, but doesn’t explain why I’m suddenly forgetting names mid-sentence or walking into rooms and having no clue why I’m there. It makes you question yourself, doesn’t it?

fwiw Like, am I making this up? Is it just fatigue? But then you have those moments, when you reach for your work bag, and the stark reality hits - that person is gone, and the “nothing wrong here” papers feel like a deliberate insult. It’s not about being a “warrior,” it’s about the quiet, grinding loss of who you were.

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that specific kind of invalidation, the ‘clean tests’ but your body is screaming, is awful. for MS, a ‘clean’ mri doesn’t always mean there’s no lesion load from previous flares, just maybe no active ones showing gadolinium contrast. it’s that invisible damage that often causes the most grief

edit: forgot to add