I’m so sorry that happened to you. We all need to hear this story to give ourselves permission to jump off any real or figurative treadmills and stay safe. Then we need to follow up that we are documented properly. And you’re right self-advocacy is exhausting!
I appreciate your empathy. It’s hard to stay safe - or even feel safe - when things like this happen. Managing symptoms and health while keeping up with documentation is a full time job!
Did they just get that blank look in their eyes, like their brains turned off? I’ll say “I can’t look down without getting dizzy” and their eyes go blank and they ignore me. If you don’t fit in their pre-programmed categories, they short out. Zero curiosity.
I long for an ADHD neurosurgeon who’ll say “omg girl! That’s awful! I wonder what’s going on? Should we brainstorm?”
Instead I get “I’m going to ignore the ‘hypermobility’ word you just said and do a backbend HEADSTAND on my office floor while flashing my $2,000 boots and telling you the LORD does the healing”! 😡
I got brave enough to write my story. Any chance you know you to animate x-rays 😃 so a surgeon can see my bone spurs sticking into my spine when I’m NOT lying flat in an MRI machine? 🤦♀️
I swear neurosurgeons are mentally deficient. I keep getting told “don’t use too many words, you’ll confuse the surgeon.” Should I pantomime? Do charades? JFC, I’m not their special ed teacher.
I’m back to lying down bc earlier today the physical therapist asked me to try some hip bridges—which pushed my body weight onto the bone spurs…. 🤦♀️
I’m so sorry that happened to you. We all need to hear this story to give ourselves permission to jump off any real or figurative treadmills and stay safe. Then we need to follow up that we are documented properly. And you’re right self-advocacy is exhausting!
I appreciate your empathy. It’s hard to stay safe - or even feel safe - when things like this happen. Managing symptoms and health while keeping up with documentation is a full time job!
Did they just get that blank look in their eyes, like their brains turned off? I’ll say “I can’t look down without getting dizzy” and their eyes go blank and they ignore me. If you don’t fit in their pre-programmed categories, they short out. Zero curiosity.
I long for an ADHD neurosurgeon who’ll say “omg girl! That’s awful! I wonder what’s going on? Should we brainstorm?”
Instead I get “I’m going to ignore the ‘hypermobility’ word you just said and do a backbend HEADSTAND on my office floor while flashing my $2,000 boots and telling you the LORD does the healing”! 😡
I got brave enough to write my story. Any chance you know you to animate x-rays 😃 so a surgeon can see my bone spurs sticking into my spine when I’m NOT lying flat in an MRI machine? 🤦♀️
I swear neurosurgeons are mentally deficient. I keep getting told “don’t use too many words, you’ll confuse the surgeon.” Should I pantomime? Do charades? JFC, I’m not their special ed teacher.
I’m back to lying down bc earlier today the physical therapist asked me to try some hip bridges—which pushed my body weight onto the bone spurs…. 🤦♀️
https://substack.com/@saracorlett/note/p-200946360?r=81i50f&utm_medium=ios&utm_source=notes-share-action
Congratulations on writing your story! You've been through a lot. I'm sorry you experienced all of that.
I've found writing is a wonderful tool for processing the difficult emotions my diagnostic odyssey has stirred up.
Oh I’m so furious for you!
It was a frustrating experience. In retrospect, I was too sick to really comprehend it all in the moment. Thank you for your empathy!