Thank you Madelleine, I’ve not heard ‘medical burnout’ applied to those of us with chronic illness but I relate. The hope, the labour, the labour of hope (managing the cycles of hope, disappointment and shame). Oof.
The pharmacology didn’t do much for me, but my exercise physiologist, general practitioner and psychologist are all helpful around pacing, monitoring what helps to manage my energy without getting too perfectionistic and ‘paralysis by analysis’ about it. I’m super lucky that they keep reminding me I can trust my body, that I’m doing everything currently available. Then I cry because there is no magic wand. But at least they don’t gaslight me like so many others experience.
I sometimes gaslight myself. My psychologist has me practicing ‘trust & believe’ about my body even if the pendulum starts to swing the other way. She looked a bit satirical when she said, “It has a LONG way to go, so I wouldn’t worry about that.” I’m glad your ME specialists are really good. Maybe society will catch up in our lifetime if we all keep writing instead of being shamed into silence.
Sounds like a good psychologist! And yes, I think the needle is moving in our favour — albeit slowly. I actually believe in a big breakthrough one day, that’s my hope right now.
More and more over the past year or so, I’ve realized that managed-care medicine has nothing to offer those with long COVID and ME/CFS but throwing pharmaceuticals at us like throwing spaghetti against the wall and seeing what sticks. I’m so over it. But to some degree, I have to stay on the Ferris wheel because my disability benefits require me to do so. Ugh. The medical burnout is real.
Oh yes burnout with the gaslighting of doctors, burn out from endless tests, burn out from invasive procedures and tests… Yup I get that. Thanks for putting a name to it!
I’m in burnout now. Sick with ME + others but got worse after Covid. I’m severe currently & it’s so difficult to get up & do the things my body needs.
I get burnt out from living so long (25+ years)with this illness especially when I’m in a long crash, like now (8 weeks). And I get burnt out from trying to find new tools to improve my quality of life and advocate for post-illness conditions. Then I need to take a break & try to have something to bring a smile or laugh everyday. Some pleasure. That helps me with both types of burnout. And reaching out to community members. It’s so important to have sick friends who completely get it 💜
I live with family who do the cooking, shopping & cleaning, plus I can’t afford rent in CA, US. This is a huge thing for me to eat healthy food without having to shop, prep, cook. What I need is an assistant to pay bills, do research, type up my poems, deal with the pharmacy & medical appointments etc. All that cognitive, print-related stuff is really hard on me.
I’m interested what specific type of care assistants or access needs people would want????
I soo feel you on the burnout. I get burnt out when I go below baseline for too long or am in a crash for a prolonged period. I like how you take breaks and find joy, or pleasure. Such an important antidote to burnout 🌸
Many thanks for this initiative - I am not able to listen to the actual medidation. When I press play a voice reads out the post but not the meditation. What am I doing wrong?
Thank you Madelleine, I’ve not heard ‘medical burnout’ applied to those of us with chronic illness but I relate. The hope, the labour, the labour of hope (managing the cycles of hope, disappointment and shame). Oof.
I know, I recently went through a period of burnout. I wish there was professional help for this, but I doubt a lot of therapists know what it is.
The pharmacology didn’t do much for me, but my exercise physiologist, general practitioner and psychologist are all helpful around pacing, monitoring what helps to manage my energy without getting too perfectionistic and ‘paralysis by analysis’ about it. I’m super lucky that they keep reminding me I can trust my body, that I’m doing everything currently available. Then I cry because there is no magic wand. But at least they don’t gaslight me like so many others experience.
Oh that’s a good thing, I’m so tired of the gaslighting. I have a really good ME specialists so that is helpful.
I sometimes gaslight myself. My psychologist has me practicing ‘trust & believe’ about my body even if the pendulum starts to swing the other way. She looked a bit satirical when she said, “It has a LONG way to go, so I wouldn’t worry about that.” I’m glad your ME specialists are really good. Maybe society will catch up in our lifetime if we all keep writing instead of being shamed into silence.
Sounds like a good psychologist! And yes, I think the needle is moving in our favour — albeit slowly. I actually believe in a big breakthrough one day, that’s my hope right now.
I believe so too. The future is not yet written.
More and more over the past year or so, I’ve realized that managed-care medicine has nothing to offer those with long COVID and ME/CFS but throwing pharmaceuticals at us like throwing spaghetti against the wall and seeing what sticks. I’m so over it. But to some degree, I have to stay on the Ferris wheel because my disability benefits require me to do so. Ugh. The medical burnout is real.
I so hear you!
Oh yes burnout with the gaslighting of doctors, burn out from endless tests, burn out from invasive procedures and tests… Yup I get that. Thanks for putting a name to it!
I hear you! ❤️🌸
I hear you! 😊😆❤️
I’m in burnout now. Sick with ME + others but got worse after Covid. I’m severe currently & it’s so difficult to get up & do the things my body needs.
I get burnt out from living so long (25+ years)with this illness especially when I’m in a long crash, like now (8 weeks). And I get burnt out from trying to find new tools to improve my quality of life and advocate for post-illness conditions. Then I need to take a break & try to have something to bring a smile or laugh everyday. Some pleasure. That helps me with both types of burnout. And reaching out to community members. It’s so important to have sick friends who completely get it 💜
I live with family who do the cooking, shopping & cleaning, plus I can’t afford rent in CA, US. This is a huge thing for me to eat healthy food without having to shop, prep, cook. What I need is an assistant to pay bills, do research, type up my poems, deal with the pharmacy & medical appointments etc. All that cognitive, print-related stuff is really hard on me.
I’m interested what specific type of care assistants or access needs people would want????
I soo feel you on the burnout. I get burnt out when I go below baseline for too long or am in a crash for a prolonged period. I like how you take breaks and find joy, or pleasure. Such an important antidote to burnout 🌸
Many thanks for this initiative - I am not able to listen to the actual medidation. When I press play a voice reads out the post but not the meditation. What am I doing wrong?
Hi Maria, you’re on the wrong post 🥰 The meditation is here: https://madelleine.substack.com/p/chronic-illness-earth-meditation