I agree. and, at 79, the past few years have taught me even more that trusting .myself and listening to my intuition and my body are essential for maintaining agency in a system that wants us to believe "they" know better. Only I have lived in my body. Only I know my my lived experiences. Each day my courage grows stronger. I refuse to be "hexed" by even well-meaning "health care" professionals.
Hi, So true, only we know our lived experience, what we've tried, what's working and what isn't. We are wise to have a clear and informed voice as these types of decisions are made.
This resonates. I've had Crohn's disease for sixty years — multiple surgeries, hospital stays, emergency room decisions. What I've learned is close to what you're circling here, but I'd put it more bluntly: you have to be in charge. You have to drive your own healthcare. You cannot hand it off to somebody else and expect it to be taken care of properly.
That means knowing when to seek out another physician because you're not getting the help you need. Knowing when to go to the emergency room and when not to. Understanding that a pill or a potion isn't going to fix it — especially when what you're dealing with is chronic and lifelong and never going away. At some point, you stop looking for the cure and start learning how to live well with it. That's a different project entirely.
The physician relationship matters — I've had good ones and not-so-good ones — but the significant decisions, the major turning points, the moments that actually changed things? Those came from me paying attention, pushing back, doing the learning, and making the calls alongside my doctor — never relying on him fully (unless I was knocked out and under anesthesia!). I've made plenty of mistakes along the way. But I have a good quality of life now. It can be done.
"At some point, you stop looking for the cure and start learning how to live well with it. That's a different project entirely" Very wise words, indeed, James. I have found it to be true.
Hi James, Thank you for sharing your first had account of dealing with the health care system and for stating so clearly the need to drive our own health care. You have summed it up well "stop look for the cure and start learning how to live well with it."
I can’t name another profession that doesn’t have to provide a reasonable cost estimate before starting work. Yes, there are huge uncertainties involved at some level of treating humans, but experts (physicians) have a reasonable estimate for when there might be complications. The patients need to have full disclosure of the financial costs, the expected reimbursement and not just their “copay”. Patients need to be included in the conversations between doctors and insurers in the process to get treatments covered, not just get a letter, often months later, that the procedure had been “approved.”. Patients need to have a record in their “patient portal” of every single person who has accessed their file and when. While patient portals are “compliant” with HIPPA rules, it also means that doctors for different things don’t get information if they are not in those portals
My goal is for America to get beyond the simple crap of Medicare for All and look a much better system of Medicaid for all. No copays, no deductibles, none of that crap that keeps people from getting the care they need. Sure some providers eschew Medicaid but only because they can. If it is the sole option, they wouldn’t have a choice.
"...such as feeling ignored, interrupted, or rushed, having our concerns dismissed, sensing a lack of empathy; and encountering unprofessionalism or refusals to explain treatment options." I have experienced all of this with various specialists and their staffs, now that I am older. I just thank heaven I have a fantastic primary care physician who listens and who advocates for me if necessary. I feel blessed; she's been my doctor for 37 years. Thanks for this fine post, Janice.
What you're describing as preparation isn't just practical. It's an act of self-respect. And that reframe, that the relationship with ourselves shapes whether we move through these moments with confusion and fear or with clarity and dignity, moves the locus of control back to the woman. Even inside a system that can make that feel impossible
I have had an issue for approximately 8 months. I have been to my internist, my naturopath, a general surgeon and none seem to have an answer. So, I’m going to another internist in another state, where I happen to be for the summer. My approach will be this:
Give him my history. And over the 8 month period of time.
The tests I’ve taken and the non results.
Then I will ask , what is next? What are the next steps we take to diagnose definitively, what is going on. If he does not know, I have a list that I will suggest. And I will ask specifically to have done, even if I pay for it in cash. Don’t leave it up to insurance. And I’m not leaving the office until we have a plan.
Navigating healthcare is not only about managing the system, but about maintaining our dignity and exercising our agency within it.
Always empowering ❤️ stay strong
I agree. and, at 79, the past few years have taught me even more that trusting .myself and listening to my intuition and my body are essential for maintaining agency in a system that wants us to believe "they" know better. Only I have lived in my body. Only I know my my lived experiences. Each day my courage grows stronger. I refuse to be "hexed" by even well-meaning "health care" professionals.
Thank you for sharing your wisdom 🙏
Hi, So true, only we know our lived experience, what we've tried, what's working and what isn't. We are wise to have a clear and informed voice as these types of decisions are made.
This resonates. I've had Crohn's disease for sixty years — multiple surgeries, hospital stays, emergency room decisions. What I've learned is close to what you're circling here, but I'd put it more bluntly: you have to be in charge. You have to drive your own healthcare. You cannot hand it off to somebody else and expect it to be taken care of properly.
That means knowing when to seek out another physician because you're not getting the help you need. Knowing when to go to the emergency room and when not to. Understanding that a pill or a potion isn't going to fix it — especially when what you're dealing with is chronic and lifelong and never going away. At some point, you stop looking for the cure and start learning how to live well with it. That's a different project entirely.
The physician relationship matters — I've had good ones and not-so-good ones — but the significant decisions, the major turning points, the moments that actually changed things? Those came from me paying attention, pushing back, doing the learning, and making the calls alongside my doctor — never relying on him fully (unless I was knocked out and under anesthesia!). I've made plenty of mistakes along the way. But I have a good quality of life now. It can be done.
"At some point, you stop looking for the cure and start learning how to live well with it. That's a different project entirely" Very wise words, indeed, James. I have found it to be true.
Hi James, Thank you for sharing your first had account of dealing with the health care system and for stating so clearly the need to drive our own health care. You have summed it up well "stop look for the cure and start learning how to live well with it."
I can’t name another profession that doesn’t have to provide a reasonable cost estimate before starting work. Yes, there are huge uncertainties involved at some level of treating humans, but experts (physicians) have a reasonable estimate for when there might be complications. The patients need to have full disclosure of the financial costs, the expected reimbursement and not just their “copay”. Patients need to be included in the conversations between doctors and insurers in the process to get treatments covered, not just get a letter, often months later, that the procedure had been “approved.”. Patients need to have a record in their “patient portal” of every single person who has accessed their file and when. While patient portals are “compliant” with HIPPA rules, it also means that doctors for different things don’t get information if they are not in those portals
Hi Tim, Your points are well-taken - and something to be considered as we deal with the healthcare system.
My goal is for America to get beyond the simple crap of Medicare for All and look a much better system of Medicaid for all. No copays, no deductibles, none of that crap that keeps people from getting the care they need. Sure some providers eschew Medicaid but only because they can. If it is the sole option, they wouldn’t have a choice.
Hi Tim, That would be a wonderful system, it seems.
This helped in preparing for my upcoming Dr. Appt. Thank you.
Hi Jo, That's great - hope all goes well!
"...such as feeling ignored, interrupted, or rushed, having our concerns dismissed, sensing a lack of empathy; and encountering unprofessionalism or refusals to explain treatment options." I have experienced all of this with various specialists and their staffs, now that I am older. I just thank heaven I have a fantastic primary care physician who listens and who advocates for me if necessary. I feel blessed; she's been my doctor for 37 years. Thanks for this fine post, Janice.
Hi Sharron, Having such a primary care physician is a blessing for sure.
Must advocate for ourselves ; we know our bodies …..and, as Linda stated above , do not leave the office until you have a plan.
Hi Karen, I totally agree with your point - we must advocate for ourselves.
What you're describing as preparation isn't just practical. It's an act of self-respect. And that reframe, that the relationship with ourselves shapes whether we move through these moments with confusion and fear or with clarity and dignity, moves the locus of control back to the woman. Even inside a system that can make that feel impossible
Hi Amy, Well said - we are talking about an act of self-respect and sense of self- worth.
I have had an issue for approximately 8 months. I have been to my internist, my naturopath, a general surgeon and none seem to have an answer. So, I’m going to another internist in another state, where I happen to be for the summer. My approach will be this:
Give him my history. And over the 8 month period of time.
The tests I’ve taken and the non results.
Then I will ask , what is next? What are the next steps we take to diagnose definitively, what is going on. If he does not know, I have a list that I will suggest. And I will ask specifically to have done, even if I pay for it in cash. Don’t leave it up to insurance. And I’m not leaving the office until we have a plan.
Hi Linda, Your point is well taken - don't leave it up to insurance. And I love that - not leaving the office until we have a plan.