So many of these lines hit me like a knife to bone. Thank you for talking to me about this on the deck this weekend, I can't stop thinking about the ways in which we shame ourselves for our bodies acting "abnormally" (because what even is a normal body??). Your willingness to be vulnerable is such a gift and I can't thank you enough for sharing it.
It’s so so so true, Kath. And it’s hard to unwrite the shame-y narratives when they are, culturally speaking, written in stone. Love to chat about any topic on any sunny deck with you 💗💗💗💗
Ali, I was diagnosed with Graves' Disease (the opposite thyroid condition) last fall and even though I didn't even realize I had symptoms, being medicated has been so lifechanging for me re: anxiety and my own expectations / beliefs around productivity. My productivity was in part fueled by my body attacking itself... LIKE! Anyway I'm so glad you also have found answers!
Ooof, a friend of mine also has Graves and I am so sorry — it sounds rouuuugh. (Our thyroids combined, though? Unstoppable.) I’m on some meds for the hormonal shitstorm, but they apparently won’t hand over the thyroid stuff until my labs get bad enough, despite the fact that I’m already symptomatic 🙃 I am so glad yours are working though!!!
I was in the ringer trying to figure out why I was throwing up everything I ate for going on a decade. Tons of appointments, stress management, got a dog, started gardening, low fiber, high fiber, high protein, sugar management, IV drips, thousands of dollars in specialist appointments, 4 endoscopies, and a million otc supplements. Nothing improved until I just walked into an ER puking blood and was like "do an abdominal ultrasound or commit me, I can't do this anymore". There was a growth blocking my cystic duct and my gallbladder had literally melted into my abdomen. An hour later I was scheduled for a gallbladder removal. I haven't puked since, but I'm also by no means "healthy" after being malnourished and riddled with inflammation for so long. The thing that gets me about it is the doctor mentioned people usually don't realize what's going on until their gallbladder ruptures, so my body was actually doing amazing work to let me know I needed help before it got that bad. They could have run the ultrasound during my first visit, but they framed my symptoms as something to be managed rather than investigated.
Wow, Scout. "They framed my symptoms as something to be managed rather than investigated" feels like it could be the thesis statement for so many chronic illness experiences. I'm so sorry it took a decade — and an ER visit — to get answers. Thank you for sharing this. The part about your body actually doing amazing work by refusing to let you ignore what was wrong really resonates with me.
Hmmm! I am different. I have had a diagnosis of schizophrenia, depression, anxiety for most of my life along with alcohol abuse. I just try to live with whatever it all is and have never actively tried to do anything except accept what the doctors give me or force on me. I would like to say this passive acceptance has been good for me but until I met my new family much of my life has been miserable! I have finally got my drinking under control though. I sleep better now. No idea why I said all this. Just loved your piece and wanted to join in!
No need to apologize for saying it, Graham — I’m glad you did. It sounds like you've carried an enormous amount for a long time, and I do think there is a balance between acceptance and action, right? Also, congratulations on getting your drinking under control. I'm especially struck by the part about your new family; sometimes connection seems to change things that medicine alone can't. Thanks for joining the conversation!
Gosh yes .. I struggled with Lyme disease for 5 years before it was diagnosed. It’s been over a decade since that diagnosis, and I still get flare ups from time to time which has bled into other areas of my health with age. I’ve settled into the fact that I have a disease that is sometimes undetected and other times requires 12 hours of sleep and brings on a good deal of pain. I’ve adjusted my mindset and have started to let this simply (and not so simply) be part of my life instead of trying to predict, control, or define it. There are certainly things that help, but I’ve also found I care less about quick fixes, about rushing to the next treatment, and I prefer something slower, more nuanced, and ultimately something let’s my body feel sick sometimes. Because dang it, it’s okay. Even though it sucks. I detest the paradigm that says all things must cured instead of allowing for a world where people are sick and hurting sometimes and need to be held in that, not just in their health.
Yes, Forrest! This! Also, I had a friend with undetected Lyme and it sounds so confusing and difficult, so sending hugs your way.
Also "allowing for a world where people are sick and hurting sometimes and need to be held in that" is such a beautiful way of putting it. I think a lot of us end up exhausted not just from being sick, but from feeling like we're failing if we're not actively fixing ourselves at all times. Thank you for this perspective.
So many of these lines hit me like a knife to bone. Thank you for talking to me about this on the deck this weekend, I can't stop thinking about the ways in which we shame ourselves for our bodies acting "abnormally" (because what even is a normal body??). Your willingness to be vulnerable is such a gift and I can't thank you enough for sharing it.
It’s so so so true, Kath. And it’s hard to unwrite the shame-y narratives when they are, culturally speaking, written in stone. Love to chat about any topic on any sunny deck with you 💗💗💗💗
Ali, I was diagnosed with Graves' Disease (the opposite thyroid condition) last fall and even though I didn't even realize I had symptoms, being medicated has been so lifechanging for me re: anxiety and my own expectations / beliefs around productivity. My productivity was in part fueled by my body attacking itself... LIKE! Anyway I'm so glad you also have found answers!
Ooof, a friend of mine also has Graves and I am so sorry — it sounds rouuuugh. (Our thyroids combined, though? Unstoppable.) I’m on some meds for the hormonal shitstorm, but they apparently won’t hand over the thyroid stuff until my labs get bad enough, despite the fact that I’m already symptomatic 🙃 I am so glad yours are working though!!!
i know the various strange amber jar pill concoctions very well... great read, thank you!
Oof, I am sorry to hear this! But thank you so much for reading 🩷
I was in the ringer trying to figure out why I was throwing up everything I ate for going on a decade. Tons of appointments, stress management, got a dog, started gardening, low fiber, high fiber, high protein, sugar management, IV drips, thousands of dollars in specialist appointments, 4 endoscopies, and a million otc supplements. Nothing improved until I just walked into an ER puking blood and was like "do an abdominal ultrasound or commit me, I can't do this anymore". There was a growth blocking my cystic duct and my gallbladder had literally melted into my abdomen. An hour later I was scheduled for a gallbladder removal. I haven't puked since, but I'm also by no means "healthy" after being malnourished and riddled with inflammation for so long. The thing that gets me about it is the doctor mentioned people usually don't realize what's going on until their gallbladder ruptures, so my body was actually doing amazing work to let me know I needed help before it got that bad. They could have run the ultrasound during my first visit, but they framed my symptoms as something to be managed rather than investigated.
Wow, Scout. "They framed my symptoms as something to be managed rather than investigated" feels like it could be the thesis statement for so many chronic illness experiences. I'm so sorry it took a decade — and an ER visit — to get answers. Thank you for sharing this. The part about your body actually doing amazing work by refusing to let you ignore what was wrong really resonates with me.
Yeeeeesssss, I've been trying to fix my pain. I've been working so hard at it thats obviously it's a personal failure that it's still there ☹️
Oof, Renee, I am so sorry to hear that. I hope something delivers relief, on both the pain front and feeling like you're failing (you're not!!).
Hmmm! I am different. I have had a diagnosis of schizophrenia, depression, anxiety for most of my life along with alcohol abuse. I just try to live with whatever it all is and have never actively tried to do anything except accept what the doctors give me or force on me. I would like to say this passive acceptance has been good for me but until I met my new family much of my life has been miserable! I have finally got my drinking under control though. I sleep better now. No idea why I said all this. Just loved your piece and wanted to join in!
No need to apologize for saying it, Graham — I’m glad you did. It sounds like you've carried an enormous amount for a long time, and I do think there is a balance between acceptance and action, right? Also, congratulations on getting your drinking under control. I'm especially struck by the part about your new family; sometimes connection seems to change things that medicine alone can't. Thanks for joining the conversation!
Gosh yes .. I struggled with Lyme disease for 5 years before it was diagnosed. It’s been over a decade since that diagnosis, and I still get flare ups from time to time which has bled into other areas of my health with age. I’ve settled into the fact that I have a disease that is sometimes undetected and other times requires 12 hours of sleep and brings on a good deal of pain. I’ve adjusted my mindset and have started to let this simply (and not so simply) be part of my life instead of trying to predict, control, or define it. There are certainly things that help, but I’ve also found I care less about quick fixes, about rushing to the next treatment, and I prefer something slower, more nuanced, and ultimately something let’s my body feel sick sometimes. Because dang it, it’s okay. Even though it sucks. I detest the paradigm that says all things must cured instead of allowing for a world where people are sick and hurting sometimes and need to be held in that, not just in their health.
Yes, Forrest! This! Also, I had a friend with undetected Lyme and it sounds so confusing and difficult, so sending hugs your way.
Also "allowing for a world where people are sick and hurting sometimes and need to be held in that" is such a beautiful way of putting it. I think a lot of us end up exhausted not just from being sick, but from feeling like we're failing if we're not actively fixing ourselves at all times. Thank you for this perspective.