This joins the core collection in the The Things I Wish I Knew Twenty-Five Years Ago Collection of my library. It's hard for someone coming in to treatment to figure out.
I have one of those tricky conditions that can be hard to diagnose, but is fairly obvious in retrospect. I've now been through these psychiatrists and internists
0. Dr. Welby's med school buddy GP—ok, here's a benzo for your panic attacks, but I don't believe you so don't use them
1. Dr. Junior resident on internist rotation—what's the problem? Panic attacks only last 20 minutes or so
2. Dr. Senior resident internist—try paroxetine; not working? Have some bupropion. (Predictable but little known polarity flip followed by instant "I've been here before."
1. Dr. Feelgood—suck it up; it doesn't really matter what the diagnosis is, there are no happy pills
2. Dr. Do-no-harm—start low, go slow and maybe in a year we'll find a therapeutic dose
3. Dr. Empiricist—there are no silver bullets, but lets go through the tree to find you something that mainly works (then we moved out of state)
4. Dr. Me2—I feel your pain, I have it too (he retired)
5. Dr. Relief Pitcher—all good?
6. Dr. Panel Buyer—says here you are an X—here's your refills, now go away
7. Dr. Empiricist again—but then he retired
8. Dr. Oh-no-that's-wrong—wouldn't renew one ingredient from the cocktail that had been working, prescribed another that I declined after finding 20 contraindications in the crimp and then tried another that was so sedating I couldn't drive the next morning—then she retired
9. Dr. Art-not science Internist—I'll refill these, but not that, try diet and exercise and other lifestyle improvements because that's why they call it behavioral health followed by, no you can't get a referral to a psychiatrist. Don't you know that there's a pandemic going on and they are accepting only patients with COVID?
10. Dr. Have-DSM-Will-Travel. Let's tweak this and throw in that. (She leave town)
11. Dr. Art-no-science-internist—I know you think its related to your psychiatric diagnosis and stopped telling me what worked for you on the past and no I'm not going to give you a referral. (He retires.)
12. I'm currently between physicians while the wait lists clear on my approved networks. Fortunately, I've got enough pills to see me through.
Except for the three psychiatrists wedged in the 2 years out of state, my treatment has been from well regarded medical centers in Seattle with excellent health coverage and no budget contraints. I've only been suicidal a few times, but got past it. I've become very well informed by diligently reading the crimps and academic literature, and I've developed a healthy skepticism about the standard of statistical evidence that is widely used. The only way that I think it would have been possible for me to have received better care was to have been a physician myself or have a close family member.
End of violin recital 🎻
If this is the pinball machine that I've been through, what the hell is it like for people without my advantages?
Amber, I really appreciate this frank talk with Sarah. Having been in the MH field for 20 years I concur with much that you both point out — even subtly playing out with psychotherapists who don’t diagnose disorders or prescribe meds. We have a ways to go as a field. My experience has led me towards early retirement and working more as a mentor in community to help folks grow in a more integrated and whole way.
Thank you for your feedback! There’s so much healing that can happen in peer support and community recovery spaces. I often encourage families to seek support groups for things like postpartum depression and parenting children with special needs.
Peer support is crucial in recovery from substance use disorder and I’m glad that there’s a growing emphasis on secular and trauma-informed approaches.
Finding the right physicians and therapists is a real challenge. Especially when insurance companies hold so much leverage over what and who people have access to.
I'm still making my way thru Sarah's book- challenging since I highlight, mark and reread so many things in it-so progress is slow.
However, I've come across this Medscape article which is fitting within the topic of Sarah's book- after reading The Body Keeps the Score (Van Der Kolk) and Silently Seizing: Common, Unrecognized and Frequently Missed Seizures and Their Potentially Damaging Impact on Individuals With Autism Spectrum ... Essential Guide for Parents and Professionals (R. N. Haines, Caren), I've been looking for answers for my own PTS for years, and found parallels between my epileptic son, my formerly deployed exhusband, and myself- the more I learn, the more I realize Sarah's book describes the journeys of so many of us.
Excellent article! I agree that use of the term “disorder” can be stigmatizing and pejorative. It also indicates a condition that one never recovers from. Such that it becomes an identity rather than a condition that can be overcome.
I might written an entire essay using this line as a prompt:
"The natural human reaction to a life-threatening event should not be labeled a disorder."
another related book that doesn't spell out what Sarah Fay spells out but that describes so many similar experiences is Resilience by Jessie Close and Glenn Close -Jessie doesn't talk about the DSMs but she describes such a horrible journey!
agreed. that realization is how I came to believe that my CPTS and my son's brain/PTS (he's had trauma from concussions and brain bleeds due to convulsions, in addition to ongoing spikes in the frontal lobes and abuse trauma) can be healed. He's come so far with neurofeedback and different therapies, especially once we got his seizure activity under control. You might really like Caren Haines' book, which I discovered when I was looking for resources for my son- her son's story is incredibly similar to my son's; we know that autism and epilepsy are both neurological matters, so her book was quite the discovery for me. But I hadn't realized any of this until a few years ago, and kept runnng up against that "disorder" word, which I have always taken to imply that something isn't cureable or healable. Society has a long way to go in the labels we choose.
Thank you so much. I’ve been writing about misdiagnosis for the last couple of years for Mad in America from the parent’s perspective. I’d love to talk further.
Really great conversation! You hit on critical points that most outside the medical community do not consider. It’s usually not until you’ve experienced an issue with care that you become well informed. I was misdiagnosed for more than two decades. When my only child became ill 7 years ago he was dismissed by the medical community because they didn’t know what they were looking at. I became a medical detective and found the answers for both of us! I’m a fierce advocate for other patients searching for answers and write about my experiences on my Substack. My father who was a physician, encouraged me to write about our story to inform others. He tried to educate his colleagues about the things they didn’t understand, but found many who were uninterested. Your insights about the issues with the structure of the medical system are on point! Your patients are lucky to have you!
I was told quite recently by an NHS psychiatrist that, and I quote 'There's no such thing as a misdiagnosis'. 🤠
Then was promptly re-diagnosed with a misdiagnosis from 15 years ago, which was explained at the time to be a misdiagnosis. I find doctors and often other healthcare professionals to be extremely arrogant.
I know and have trained with many insufferable physicians. The belief that one knows everything shuts down the ability to learn. It often shuts down the ability to hear other viewpoints as well.
I find this sense of intellectual superiority, whether they are truly more knowledgeable or not, to be a terrible quality. I'm a huge fan of the physicians or healthcare practitioners who are taking a more holistic approach to patients. Instead of seeking the buzzword and making a diagnosis, trying to better understand the patients as a whole. Instead of rushing to get them out, they'll take a full hour to better understand them as a whole. Diet, lifestyle, what's going on at home—these things matter. Unfortunately, they're rarely explored by today's fast-moving, patient turnover-maximizing physicians. I firmly believe that if healthcare was focused on actually figuring out why a patient isn't well (under the hood) instead of simply following the standard algorithms of care, that people like Sarah wouldn't have to spend half their lives trying to figure out why they're not well. Thanks for this wonderful piece Dr. Hull.
I think there’s a real desire among many physicians to take time to get to know our patients and truly guide them through health as well as injury and illness. But you’re correct that the algorithms and profit driven structure of the US healthcare system don’t allow for that.
Insurance companies pay for diagnosis and procedure codes. They don’t pay for a listening ear, a shoulder to cry on or help interpreting the medical nonsense on TikTok.
Doctors who want to take care of patients without having their time managed by venture capitalists and insurance companies are turning to cash-pay and membership-based service models. From what I’ve seen there an exodus of physicians from insurance-based clinics that will continue as shareholder profits are prioritized over patient care. Direct Primary Care is an excellent alternative that’s more cost effective than most people realize.
My son has an eileptologist who is OUTSTANDING in that he listens and discusses thoughts and ideas, he's receptive to questions and new information, and really works to understand my son's unique neurological challenges. We are so very lucky.
As a healthcare professional, I find this to be gut-wrenching and simply unacceptable. I too had a health scare a few years back (uncontrollable muscle twitching) and waited nearly four months to see a neurologist. Having a medical background, I knew with a certain level of confidence that it was a benign condition, but when I got to the neurologist, I was more nervous than I was on my first date! The neurologist put his medical student, who was on day 1 of her rotation, on my case. He sat by, texting on his phone, and at the end told me it's nothing to worry about. Regardless of whether someone is being diagnosed with a benign condition or a life-altering disease, healthcare professionals need to step up their game. I don't necessarily mind the arrogance, it seems to be ubiquitous, but you can be arrogant AND empathetic, which is sorely lacking in clinics and hospitals these days. Sorry you had to go through this... It's unacceptable. Also, Sarah is great and thanks to Dr. Hull for this piece.
I’m sorry to hear this happened to you. It was terrible patient care and lazy teaching on the part of the neurologist.
I understand that gallows humor and a certain level of detachment are coping mechanisms within the trenches of medical training . But that level of insufferable arrogance undermines professional relationships as well as patient confidence.
Thank you. I'm lucky to have had medical training and understood what was happening neurologically. It's unfortunate for those who don't and are left scared, vulnerable, and with plenty of unanswered questions. Funny enough (not really), I'd gone home and read his patient feedback and it was eerily similar to my experience. Unfortunate. Better standards are needed.
This joins the core collection in the The Things I Wish I Knew Twenty-Five Years Ago Collection of my library. It's hard for someone coming in to treatment to figure out.
I have one of those tricky conditions that can be hard to diagnose, but is fairly obvious in retrospect. I've now been through these psychiatrists and internists
0. Dr. Welby's med school buddy GP—ok, here's a benzo for your panic attacks, but I don't believe you so don't use them
1. Dr. Junior resident on internist rotation—what's the problem? Panic attacks only last 20 minutes or so
2. Dr. Senior resident internist—try paroxetine; not working? Have some bupropion. (Predictable but little known polarity flip followed by instant "I've been here before."
1. Dr. Feelgood—suck it up; it doesn't really matter what the diagnosis is, there are no happy pills
2. Dr. Do-no-harm—start low, go slow and maybe in a year we'll find a therapeutic dose
3. Dr. Empiricist—there are no silver bullets, but lets go through the tree to find you something that mainly works (then we moved out of state)
4. Dr. Me2—I feel your pain, I have it too (he retired)
5. Dr. Relief Pitcher—all good?
6. Dr. Panel Buyer—says here you are an X—here's your refills, now go away
7. Dr. Empiricist again—but then he retired
8. Dr. Oh-no-that's-wrong—wouldn't renew one ingredient from the cocktail that had been working, prescribed another that I declined after finding 20 contraindications in the crimp and then tried another that was so sedating I couldn't drive the next morning—then she retired
9. Dr. Art-not science Internist—I'll refill these, but not that, try diet and exercise and other lifestyle improvements because that's why they call it behavioral health followed by, no you can't get a referral to a psychiatrist. Don't you know that there's a pandemic going on and they are accepting only patients with COVID?
10. Dr. Have-DSM-Will-Travel. Let's tweak this and throw in that. (She leave town)
11. Dr. Art-no-science-internist—I know you think its related to your psychiatric diagnosis and stopped telling me what worked for you on the past and no I'm not going to give you a referral. (He retires.)
12. I'm currently between physicians while the wait lists clear on my approved networks. Fortunately, I've got enough pills to see me through.
Except for the three psychiatrists wedged in the 2 years out of state, my treatment has been from well regarded medical centers in Seattle with excellent health coverage and no budget contraints. I've only been suicidal a few times, but got past it. I've become very well informed by diligently reading the crimps and academic literature, and I've developed a healthy skepticism about the standard of statistical evidence that is widely used. The only way that I think it would have been possible for me to have received better care was to have been a physician myself or have a close family member.
End of violin recital 🎻
If this is the pinball machine that I've been through, what the hell is it like for people without my advantages?
Amber, I really appreciate this frank talk with Sarah. Having been in the MH field for 20 years I concur with much that you both point out — even subtly playing out with psychotherapists who don’t diagnose disorders or prescribe meds. We have a ways to go as a field. My experience has led me towards early retirement and working more as a mentor in community to help folks grow in a more integrated and whole way.
Thank you for your feedback! There’s so much healing that can happen in peer support and community recovery spaces. I often encourage families to seek support groups for things like postpartum depression and parenting children with special needs.
Peer support is crucial in recovery from substance use disorder and I’m glad that there’s a growing emphasis on secular and trauma-informed approaches.
Finding the right physicians and therapists is a real challenge. Especially when insurance companies hold so much leverage over what and who people have access to.
Yes
Beautiful
I'm still making my way thru Sarah's book- challenging since I highlight, mark and reread so many things in it-so progress is slow.
However, I've come across this Medscape article which is fitting within the topic of Sarah's book- after reading The Body Keeps the Score (Van Der Kolk) and Silently Seizing: Common, Unrecognized and Frequently Missed Seizures and Their Potentially Damaging Impact on Individuals With Autism Spectrum ... Essential Guide for Parents and Professionals (R. N. Haines, Caren), I've been looking for answers for my own PTS for years, and found parallels between my epileptic son, my formerly deployed exhusband, and myself- the more I learn, the more I realize Sarah's book describes the journeys of so many of us.
https://www.medscape.com/viewarticle/ptsd-needs-new-name-experts-say-heres-why-2024a1000ey2?ecd=WNL_trdalrt_pos2_240814_etid6748550&uac=49095BV&impID=6748550
Excellent article! I agree that use of the term “disorder” can be stigmatizing and pejorative. It also indicates a condition that one never recovers from. Such that it becomes an identity rather than a condition that can be overcome.
I might written an entire essay using this line as a prompt:
"The natural human reaction to a life-threatening event should not be labeled a disorder."
another related book that doesn't spell out what Sarah Fay spells out but that describes so many similar experiences is Resilience by Jessie Close and Glenn Close -Jessie doesn't talk about the DSMs but she describes such a horrible journey!
agreed. that realization is how I came to believe that my CPTS and my son's brain/PTS (he's had trauma from concussions and brain bleeds due to convulsions, in addition to ongoing spikes in the frontal lobes and abuse trauma) can be healed. He's come so far with neurofeedback and different therapies, especially once we got his seizure activity under control. You might really like Caren Haines' book, which I discovered when I was looking for resources for my son- her son's story is incredibly similar to my son's; we know that autism and epilepsy are both neurological matters, so her book was quite the discovery for me. But I hadn't realized any of this until a few years ago, and kept runnng up against that "disorder" word, which I have always taken to imply that something isn't cureable or healable. Society has a long way to go in the labels we choose.
Thank you so much. I’ve been writing about misdiagnosis for the last couple of years for Mad in America from the parent’s perspective. I’d love to talk further.
Really great conversation! You hit on critical points that most outside the medical community do not consider. It’s usually not until you’ve experienced an issue with care that you become well informed. I was misdiagnosed for more than two decades. When my only child became ill 7 years ago he was dismissed by the medical community because they didn’t know what they were looking at. I became a medical detective and found the answers for both of us! I’m a fierce advocate for other patients searching for answers and write about my experiences on my Substack. My father who was a physician, encouraged me to write about our story to inform others. He tried to educate his colleagues about the things they didn’t understand, but found many who were uninterested. Your insights about the issues with the structure of the medical system are on point! Your patients are lucky to have you!
“3rd party bean counters”
All of this is so important !!!
Love it-overdue…
As a holistic lifestyle for most of my life-momma with first baby born at home naturally, ecstatically
Two years later I was hijacked to the king of industrial medical complex
Nothing less than hospital rape
I’ve written researched navigated multiple medical mistakes
Only in past few years can I speak feel safe to speak
And know I did not do anything wrong
It’s dark world
I appreciate what you are doing
Love sarah
Thank you Dr. Amber Hull
I look forward to more
💜👏🌹👏🧡
I was told quite recently by an NHS psychiatrist that, and I quote 'There's no such thing as a misdiagnosis'. 🤠
Then was promptly re-diagnosed with a misdiagnosis from 15 years ago, which was explained at the time to be a misdiagnosis. I find doctors and often other healthcare professionals to be extremely arrogant.
I know and have trained with many insufferable physicians. The belief that one knows everything shuts down the ability to learn. It often shuts down the ability to hear other viewpoints as well.
I find this sense of intellectual superiority, whether they are truly more knowledgeable or not, to be a terrible quality. I'm a huge fan of the physicians or healthcare practitioners who are taking a more holistic approach to patients. Instead of seeking the buzzword and making a diagnosis, trying to better understand the patients as a whole. Instead of rushing to get them out, they'll take a full hour to better understand them as a whole. Diet, lifestyle, what's going on at home—these things matter. Unfortunately, they're rarely explored by today's fast-moving, patient turnover-maximizing physicians. I firmly believe that if healthcare was focused on actually figuring out why a patient isn't well (under the hood) instead of simply following the standard algorithms of care, that people like Sarah wouldn't have to spend half their lives trying to figure out why they're not well. Thanks for this wonderful piece Dr. Hull.
I think there’s a real desire among many physicians to take time to get to know our patients and truly guide them through health as well as injury and illness. But you’re correct that the algorithms and profit driven structure of the US healthcare system don’t allow for that.
Insurance companies pay for diagnosis and procedure codes. They don’t pay for a listening ear, a shoulder to cry on or help interpreting the medical nonsense on TikTok.
Doctors who want to take care of patients without having their time managed by venture capitalists and insurance companies are turning to cash-pay and membership-based service models. From what I’ve seen there an exodus of physicians from insurance-based clinics that will continue as shareholder profits are prioritized over patient care. Direct Primary Care is an excellent alternative that’s more cost effective than most people realize.
My son has an eileptologist who is OUTSTANDING in that he listens and discusses thoughts and ideas, he's receptive to questions and new information, and really works to understand my son's unique neurological challenges. We are so very lucky.
That's amazing! I'm happy to hear this :)
Agree thank you Paul
As a healthcare professional, I find this to be gut-wrenching and simply unacceptable. I too had a health scare a few years back (uncontrollable muscle twitching) and waited nearly four months to see a neurologist. Having a medical background, I knew with a certain level of confidence that it was a benign condition, but when I got to the neurologist, I was more nervous than I was on my first date! The neurologist put his medical student, who was on day 1 of her rotation, on my case. He sat by, texting on his phone, and at the end told me it's nothing to worry about. Regardless of whether someone is being diagnosed with a benign condition or a life-altering disease, healthcare professionals need to step up their game. I don't necessarily mind the arrogance, it seems to be ubiquitous, but you can be arrogant AND empathetic, which is sorely lacking in clinics and hospitals these days. Sorry you had to go through this... It's unacceptable. Also, Sarah is great and thanks to Dr. Hull for this piece.
I’m sorry to hear this happened to you. It was terrible patient care and lazy teaching on the part of the neurologist.
I understand that gallows humor and a certain level of detachment are coping mechanisms within the trenches of medical training . But that level of insufferable arrogance undermines professional relationships as well as patient confidence.
Thank you. I'm lucky to have had medical training and understood what was happening neurologically. It's unfortunate for those who don't and are left scared, vulnerable, and with plenty of unanswered questions. Funny enough (not really), I'd gone home and read his patient feedback and it was eerily similar to my experience. Unfortunate. Better standards are needed.
🧐