To your 404 error...503 service is unavailable, server not responding
Sending hugs, my friend, no words. I'll sit alongside in empathy and nod my head.
Recent story, a cis woman (she/her) - had excruciating pain, a history of GI issues, and several consultations with different doctors, each focusing on historical colon lesions and her irritable bowel syndrome. Finally, she got to see an oncologist - recently diagnosed with stage 4 bowel cancer.
The only place I know where I had exceptional care was Switzerland - for obvious reasons. I tell ALL my friends to take a friend with them to A&E.
Thank you, Victoria. Friendship like yours makes a huge difference. After all, I know that you hear me when others do not.
And your friend’s story of all that pain and the time it took to get a proper diagnosis… that’s heartbreaking. I wish I could understand why this happens to so many of us.
I'm not even trans and except for switching the hormones out this exact same series of bullshit procedures along with the hostile "it's just stress, you need to practice better self-care" bullshit.
I mean really, we should try yoga. I have literally been told by medical “professionals” to do so. So they believe in the power of stress, but they do not believe in our individual power to know our bodies.
I have an autoimmune blood clotting disorder that is named after the rheumatologist who discovered it in the UK. However no rheumatologist in my own city will see me for the disease even though the places that specialize in it in this country recommend a hematologist and a rheumatologist in very plain language. Nope. I don't know what I'm talking about. I'm kinda just waiting for a stroke. I mean hopefully not. But...
Rachel, Is that Hughes disease (antiphospholipid syndrome)? Its becoming better understood but not soon enough for many sufferers. I had a work colleague who had it and I’ve read that up to 20% (based on my memory) of chronic migraine sufferers had it and obtained ‘remission’ from their headaches once they were on blood thinners. Here’s hoping you dodge the shonky doctors and the more extreme signs and symptoms if so.
Also, please don’t reply if you’d rather not disclose details. I shouldn’t ask, sorry. Despite having invisible illnesses myself I still make rookie anti-ableism mistakes at times 🫣❤️🩹
You are good! Better than my GP and every rheumatologist in Louisville. I had a decent hematologist but he went MIA about six months before COVID. They had me on atypical anticoagulants and it seems to be pretty accepted that these medications are not especially helpful for APS clots? For some unknown reason I can't tolerate Coumadin. It's always too high (like not registering) or not doing anything. I don't want to say that they all seemed fairly unconcerned about all the lupus like symptoms I've been having for years except for the fact that they seemed pretty unconcerned about all the lupus like SLE Lupus (not just the anticoagulant). They reminded me that having a positive lupus anticoagulant test has absolutely nothing to do with having systemic lupus. Except for the times when it does. But have I tried yoga?! I have to laugh because I simply don't have the energy to battle with them anymore. I'll get around to seeking vengeance through better living eventually but it's not super easy and they AREN'T actually legislating away my right to good treatment. It's just not here. I didn't want a hysterectomy but I was coerced into getting one. People that want or need them have their requests refused. It's insane. I'm mostly glad that I can't get pregnant now but I would have rather felt like I chose.
Oof! That sounds rough. There are lots of complaints about UK/NZ/Australia but universal basic health care makes living easier, though someone in a rural area likely would have a similar experience to you. I hope you get the care you need.
But do you ever feel like our bodies are NOT the ones fucking things up? Like maybe they're our only solid partner in anything, if only the docs would learn to listen.
You know, this perspective is really making me check my privilege right now. Because I've almost wholly been believed and listened to by doctors my whole life. I have one health thing that doesn't necessarily have an answer as to why it's happening, but am still being supported by doctors in monitoring it.
I have a lot of frustrations around my health and the ways my issues seem to pile upon one another, but being treated poorly by doctors isn't one of them. Part of this is because most of my afflictions have diagnosable answers, but it's also because of my identity.
Thank you for helping me think a little deeper about this.
Macey, what a wonderful thing to realize and share. Thank you. It’s so tough to see our own privilege, but many of us have it in these unexpected places. As a white person with a job and healthcare and a supportive family I have it too. I think it’s valuable to document our journeys, good, bad, and meh, so that our larger communities see themselves and have a place for their voices. Your voice is part of that.
♥️ with you on this journey into the medical world. I've personally discovered some wonderful doctors who listen to & collaborate with me - but most of them are unconventional and very expensive. hoping we make actual progress in training empathetic medical staff & ensuring holistic care is realistically affordable (free). and in the meantime, I hope you find a medical ally! (I know they're out there! I went to school with a few.)
I want to clarify, too: my medical history is VERY different from yours. and I'm mostly speaking from the experience of caretaker (my family has spent the year recovering from mold illness - among other things) but I find it very sad that so many folx struggle to find what they need here ♥️
Even with the many differences in bodies and experiences, I think there is a lot that's relatable about how we are treated by the medical system. And I genuinely believe it is a systemic failure, not really an individual one. I think my doc would probably like to solve more problems with me, but the system holds him back.
Oy Robin. The worst part is your ending. Or lack thereof. Still no answers. I am so sorry.
It is confusing and frustrating why this is so common. I started to write out my nightmare of a hysterectomy story, but instead I'll just add another vote to the reminder that you are not alone in these frustrations.
Anything related to figuring out hormones is also always so freaking complicated. You are in such an impossibly challenging situation. 😢
I've been here for a few days staring at the estrogen creme and DHEA supplements that have arrived, that I also know I need - but am terrified to start, wondering what the docs haven't appropriately explained to me or warned me about for potential side effects or complications.
I'm sending good vibes, which will include small electric shocks to be administered to your medical team any time they try to make you feel guilty for providing your body with what you know it needs.
Rose, thank you. I always find it remarkable how many people DO understand, which makes it harder to reconcile a medical community that DOES NOT get it. Good vibes for you as well. Our bodies deserve the best.
Oh yeah, it totally is. But it might also be pretty cool if a doctor ever said something like, “You should eat whatever makes you feel good or brings you joy or helps you connect to the people you love.” I bet that’s just not in their script at all.
Wow Robin, what is it with doctors anyway? While I am sure there are many good ones out there, the ones you are referring to are surely aren't. What ever happened to "First do no harm"?
I wonder how they would respond if they read my words. They probably sleep well at night believing they are providing the best care possible, and I think their hearts are likely in very good places. I'm not the only one who puts on a brave face in those offices to try to get the care I need, but it's clearly a game we're playing. And if we, the patients, know how the game works, surely the providers must know too?
Ugh. Just ugh. I'm sorry you're going through this. I'm sad that our healthcare system doesn't know how to provide care. I'm here in solidarity. And if you're interested and ever up for a short road trip, I can recommend my wonderful doctor who, for the first time in my life, actually listens and believes me.
Being believed is such a big deal, and I wonder how traumatized we must all be to see that as the hallmark of a "really good" provider. It *should* be the standard of care from every provider.
But seriously, I'm only heading your way to drop off a jar of bluebarb jam. Priorities, right?
I know very few people that haven’t gone through some form of this scenario in their lives, from minor to life threatening. Though there are good doctors out there, our health care system’s dismal incentivizing practices (which our health insurance system is part of as well) does a real disservice to patients
I really feel for you, Robin! Sending hugs and courage. Especially for the worse days.
I don’t know what it’s like but my wife is chronically ill and chronically traumatized by US docs. And we live in the SF Bay Area! She was lucky enough to be able to go see her parent’s docs while visiting them in Brazil. They treated her like respectfully for the first time in years. She also managed to get tests done that they refuse to give her in the US and shed a little light on her medical issues without still really knowing when and what’s going to hurt next.
My French friends who were just visiting told me to see docs in France. That’s what most of my French American friends do because the health care providers and the system SUCK in this country.
Oh Soph, thank you! I am so sorry your wife has gone through so much trauma. Please send her my love and solidarity. Those of us with any type of chronic illness and/or disability really are subjected to brutality and disregard in the worst ways.
Wishing you hadn’t had to go through this mix of stigma, ignorance and gas lighting Robin. Your essay made me realise its not even the ignorance that’s the worst bit, its the way that medical culture seems to need to blame the patient for their inability to diagnose or treat a symptom... As outraged as we can be when the answer is “I don’t know”, that and a referral to someone else who might is what we need and deserve.
Oh yeah, agreed there. We shouldn't be blamed for having bodies that don't respond to their treatments or fit their parameters. Seriously, my body has done well enough without B12 for four decades. I clearly don't need it. Rare? Sure. But I'm still here, and I feel better without that stuff in my body.
If I were a doctor, which I am NOT, that alone would make me wonder if the b12 deficiency is not classic ‘pernicious anemia’ but a side effect of something else that is going on. Or if you are reacting to something other than b12 in the injections...maybe they contain a carrier or binder? But again, I’m not a doctor or a biochemist. I hope you get an answer and a solution that means you feel even better. And some medical respect for your human dignity.
B12 allergies often happen when a person has a cobalt allergy, and those are pretty rare. You usually don’t know you have that allergy until you take a B supplement or shot. This is my fourth time trying to get vitamin B into my body with the same result, so I think it’s just how my code was written.
Thank you for that insight. Reading back the comment you answered it reads like I’m giving you suggestions. That wasn’t my intention... I was following my curiosity and wondering why some doctors don’t or aren’t encouraged to. Its not a good idea to comment while awake in the wee hours of the night... and here I’ve done it again. So I’ll circle back to the refrain of your original post, none of us need more ‘but have you tried yoga’ energy in our lives.
Oh goodness, I could see your friendly intent. No harm done at all. I wish more doctors followed their curiosity, too. I think we could all learn more if we stayed open in that way.
Huge sighs. I wish I was unable to know exactly what you mean, but in truth I do… diagnostic skills have fallen out of favor with most MDs, due to the fear of being sued, and so they order every single test, then assume it’s something else (just because their tests couldn’t solve it) then treat you for that something else, meanwhile you get worse.
The whole thing feels like a distraction technique. Keep me focused on the next set of tests and appointments, all the while my real issues can't ever be addressed.
Solved... well that's complicated. No, not entirely. I struggle with the agency to confront my doctor about my needs for fear that he will send me down another winding path with no real conclusion. And, to be fair, my current doc is the best one I have had in years.
To your 404 error...503 service is unavailable, server not responding
Sending hugs, my friend, no words. I'll sit alongside in empathy and nod my head.
Recent story, a cis woman (she/her) - had excruciating pain, a history of GI issues, and several consultations with different doctors, each focusing on historical colon lesions and her irritable bowel syndrome. Finally, she got to see an oncologist - recently diagnosed with stage 4 bowel cancer.
The only place I know where I had exceptional care was Switzerland - for obvious reasons. I tell ALL my friends to take a friend with them to A&E.
Thank you, Victoria. Friendship like yours makes a huge difference. After all, I know that you hear me when others do not.
And your friend’s story of all that pain and the time it took to get a proper diagnosis… that’s heartbreaking. I wish I could understand why this happens to so many of us.
Oh if only this didn't sound familiar.
Ugh, I’m sorry that it does. But I’m sitting next to you.
I'm not even trans and except for switching the hormones out this exact same series of bullshit procedures along with the hostile "it's just stress, you need to practice better self-care" bullshit.
I mean really, we should try yoga. I have literally been told by medical “professionals” to do so. So they believe in the power of stress, but they do not believe in our individual power to know our bodies.
I have an autoimmune blood clotting disorder that is named after the rheumatologist who discovered it in the UK. However no rheumatologist in my own city will see me for the disease even though the places that specialize in it in this country recommend a hematologist and a rheumatologist in very plain language. Nope. I don't know what I'm talking about. I'm kinda just waiting for a stroke. I mean hopefully not. But...
Rachel, Is that Hughes disease (antiphospholipid syndrome)? Its becoming better understood but not soon enough for many sufferers. I had a work colleague who had it and I’ve read that up to 20% (based on my memory) of chronic migraine sufferers had it and obtained ‘remission’ from their headaches once they were on blood thinners. Here’s hoping you dodge the shonky doctors and the more extreme signs and symptoms if so.
Also, please don’t reply if you’d rather not disclose details. I shouldn’t ask, sorry. Despite having invisible illnesses myself I still make rookie anti-ableism mistakes at times 🫣❤️🩹
You are good! Better than my GP and every rheumatologist in Louisville. I had a decent hematologist but he went MIA about six months before COVID. They had me on atypical anticoagulants and it seems to be pretty accepted that these medications are not especially helpful for APS clots? For some unknown reason I can't tolerate Coumadin. It's always too high (like not registering) or not doing anything. I don't want to say that they all seemed fairly unconcerned about all the lupus like symptoms I've been having for years except for the fact that they seemed pretty unconcerned about all the lupus like SLE Lupus (not just the anticoagulant). They reminded me that having a positive lupus anticoagulant test has absolutely nothing to do with having systemic lupus. Except for the times when it does. But have I tried yoga?! I have to laugh because I simply don't have the energy to battle with them anymore. I'll get around to seeking vengeance through better living eventually but it's not super easy and they AREN'T actually legislating away my right to good treatment. It's just not here. I didn't want a hysterectomy but I was coerced into getting one. People that want or need them have their requests refused. It's insane. I'm mostly glad that I can't get pregnant now but I would have rather felt like I chose.
Oof! That sounds rough. There are lots of complaints about UK/NZ/Australia but universal basic health care makes living easier, though someone in a rural area likely would have a similar experience to you. I hope you get the care you need.
🩷 I'll tell everyone everything I can't stop sometimes it's so fascinating anyone asks!
Phew!
Really I'm honestly still impressed you nailed it in one!🩷
Yes, I'm always so mortified when it takes someone half as many words or less to say what I can only say badly with many. But yes absolutely.
I feel this. When the list of the ways your body has fucked up keeps growing. There's no frustration like it.
But do you ever feel like our bodies are NOT the ones fucking things up? Like maybe they're our only solid partner in anything, if only the docs would learn to listen.
You know, this perspective is really making me check my privilege right now. Because I've almost wholly been believed and listened to by doctors my whole life. I have one health thing that doesn't necessarily have an answer as to why it's happening, but am still being supported by doctors in monitoring it.
I have a lot of frustrations around my health and the ways my issues seem to pile upon one another, but being treated poorly by doctors isn't one of them. Part of this is because most of my afflictions have diagnosable answers, but it's also because of my identity.
Thank you for helping me think a little deeper about this.
Macey, what a wonderful thing to realize and share. Thank you. It’s so tough to see our own privilege, but many of us have it in these unexpected places. As a white person with a job and healthcare and a supportive family I have it too. I think it’s valuable to document our journeys, good, bad, and meh, so that our larger communities see themselves and have a place for their voices. Your voice is part of that.
♥️ with you on this journey into the medical world. I've personally discovered some wonderful doctors who listen to & collaborate with me - but most of them are unconventional and very expensive. hoping we make actual progress in training empathetic medical staff & ensuring holistic care is realistically affordable (free). and in the meantime, I hope you find a medical ally! (I know they're out there! I went to school with a few.)
I want to clarify, too: my medical history is VERY different from yours. and I'm mostly speaking from the experience of caretaker (my family has spent the year recovering from mold illness - among other things) but I find it very sad that so many folx struggle to find what they need here ♥️
Even with the many differences in bodies and experiences, I think there is a lot that's relatable about how we are treated by the medical system. And I genuinely believe it is a systemic failure, not really an individual one. I think my doc would probably like to solve more problems with me, but the system holds him back.
Oy Robin. The worst part is your ending. Or lack thereof. Still no answers. I am so sorry.
It is confusing and frustrating why this is so common. I started to write out my nightmare of a hysterectomy story, but instead I'll just add another vote to the reminder that you are not alone in these frustrations.
Anything related to figuring out hormones is also always so freaking complicated. You are in such an impossibly challenging situation. 😢
I've been here for a few days staring at the estrogen creme and DHEA supplements that have arrived, that I also know I need - but am terrified to start, wondering what the docs haven't appropriately explained to me or warned me about for potential side effects or complications.
I'm sending good vibes, which will include small electric shocks to be administered to your medical team any time they try to make you feel guilty for providing your body with what you know it needs.
Rose, thank you. I always find it remarkable how many people DO understand, which makes it harder to reconcile a medical community that DOES NOT get it. Good vibes for you as well. Our bodies deserve the best.
So frustrating. Ooof. One that I particularly hate is "have you tried drinking water?" Like no, my chronic issues are not dehydration, thank you...
Ha! Yeah, I had one doc try to convince me to be vegan. I mean, I don't think bacon got me into this mess, and I'll be damned if I'm giving it up now.
Yes, I feel like no one wants diet advice, no matter what it is...feels very intrusive and inappropriate.
Oh yeah, it totally is. But it might also be pretty cool if a doctor ever said something like, “You should eat whatever makes you feel good or brings you joy or helps you connect to the people you love.” I bet that’s just not in their script at all.
Wow Robin, what is it with doctors anyway? While I am sure there are many good ones out there, the ones you are referring to are surely aren't. What ever happened to "First do no harm"?
I wonder how they would respond if they read my words. They probably sleep well at night believing they are providing the best care possible, and I think their hearts are likely in very good places. I'm not the only one who puts on a brave face in those offices to try to get the care I need, but it's clearly a game we're playing. And if we, the patients, know how the game works, surely the providers must know too?
You make an excellent point Robin.
Ugh. Just ugh. I'm sorry you're going through this. I'm sad that our healthcare system doesn't know how to provide care. I'm here in solidarity. And if you're interested and ever up for a short road trip, I can recommend my wonderful doctor who, for the first time in my life, actually listens and believes me.
Being believed is such a big deal, and I wonder how traumatized we must all be to see that as the hallmark of a "really good" provider. It *should* be the standard of care from every provider.
But seriously, I'm only heading your way to drop off a jar of bluebarb jam. Priorities, right?
Far too common a narrative. So many live diminished and relatively isolated lives because no one in a position to effect change actually listened.
I have my own story but yours speaks volumes for others.
Our stories matter, Shayne. They all matter.
I know very few people that haven’t gone through some form of this scenario in their lives, from minor to life threatening. Though there are good doctors out there, our health care system’s dismal incentivizing practices (which our health insurance system is part of as well) does a real disservice to patients
Agreed, I think this is the most common narrative of healthcare in north america. And that is a sad thing to admit.
I really feel for you, Robin! Sending hugs and courage. Especially for the worse days.
I don’t know what it’s like but my wife is chronically ill and chronically traumatized by US docs. And we live in the SF Bay Area! She was lucky enough to be able to go see her parent’s docs while visiting them in Brazil. They treated her like respectfully for the first time in years. She also managed to get tests done that they refuse to give her in the US and shed a little light on her medical issues without still really knowing when and what’s going to hurt next.
My French friends who were just visiting told me to see docs in France. That’s what most of my French American friends do because the health care providers and the system SUCK in this country.
What to do…
Big sight…
Big hug…
Oh Soph, thank you! I am so sorry your wife has gone through so much trauma. Please send her my love and solidarity. Those of us with any type of chronic illness and/or disability really are subjected to brutality and disregard in the worst ways.
Wishing you hadn’t had to go through this mix of stigma, ignorance and gas lighting Robin. Your essay made me realise its not even the ignorance that’s the worst bit, its the way that medical culture seems to need to blame the patient for their inability to diagnose or treat a symptom... As outraged as we can be when the answer is “I don’t know”, that and a referral to someone else who might is what we need and deserve.
Oh yeah, agreed there. We shouldn't be blamed for having bodies that don't respond to their treatments or fit their parameters. Seriously, my body has done well enough without B12 for four decades. I clearly don't need it. Rare? Sure. But I'm still here, and I feel better without that stuff in my body.
If I were a doctor, which I am NOT, that alone would make me wonder if the b12 deficiency is not classic ‘pernicious anemia’ but a side effect of something else that is going on. Or if you are reacting to something other than b12 in the injections...maybe they contain a carrier or binder? But again, I’m not a doctor or a biochemist. I hope you get an answer and a solution that means you feel even better. And some medical respect for your human dignity.
B12 allergies often happen when a person has a cobalt allergy, and those are pretty rare. You usually don’t know you have that allergy until you take a B supplement or shot. This is my fourth time trying to get vitamin B into my body with the same result, so I think it’s just how my code was written.
Thank you for that insight. Reading back the comment you answered it reads like I’m giving you suggestions. That wasn’t my intention... I was following my curiosity and wondering why some doctors don’t or aren’t encouraged to. Its not a good idea to comment while awake in the wee hours of the night... and here I’ve done it again. So I’ll circle back to the refrain of your original post, none of us need more ‘but have you tried yoga’ energy in our lives.
Oh goodness, I could see your friendly intent. No harm done at all. I wish more doctors followed their curiosity, too. I think we could all learn more if we stayed open in that way.
Huge sighs. I wish I was unable to know exactly what you mean, but in truth I do… diagnostic skills have fallen out of favor with most MDs, due to the fear of being sued, and so they order every single test, then assume it’s something else (just because their tests couldn’t solve it) then treat you for that something else, meanwhile you get worse.
I so hope that it’s been solved now.(?)
The whole thing feels like a distraction technique. Keep me focused on the next set of tests and appointments, all the while my real issues can't ever be addressed.
Solved... well that's complicated. No, not entirely. I struggle with the agency to confront my doctor about my needs for fear that he will send me down another winding path with no real conclusion. And, to be fair, my current doc is the best one I have had in years.
Soooooo accurate. The yoga thing made me giggle.
Well, yoga really does help a lot of things...
yes....in empathy, my friends. Keep the faith.
Thanks, Janice. Friendship makes all of this so much easier.
I often think, "How does she do it? She is so brave, so courageous." You are my hero.