Those 15 minute visits, doctors must feel like they’re speed dating.
At the doctor today, I see four people before the doctor finally enters. She has to read my chart on the computer to see why I’m there.
In the end, I get the same contempt in a look that I’ve gotten for years. Three trials of statins for high LDL numbers, and the side effects have been intolerable. Nausea, fainting, stif painful muscles like cement. And yet, every visit she tries to make me take the sane drugs.
She then types something into my record, Non-compliant.
This is where I struggle with the “expert patient” framing. Informed patients are absolutely a good thing. But when someone has to become an amateur clinician, researcher, and care coordinator just to be heard or get the right workup, that’s not empowerment. That’s the system shifting more of its job onto the patient.
As a late diagnosed AuDHD woman possibly living with undiagnosed hEDS for 52 years this resonates with me deeply. As a mother of a recently diagnosed AuDHD child who suffers from debilitating fatigue, brain fog, and extreme chronic pain that could be related to a diagnosed Covid Infection, trauma or simply a hormone imbalance, this resonates to my core.
It has felt like the doctors I've interacted with have lost their curiosity. I watch shows on television that show an ER doctor getting in trouble for going above and beyond for a patient with a cough and expect my primary care doctor will show even more curiosity -- but they don't.
When people ask me what I do I often joke that my doctors appointments are my full time job. I’ve been lucky that most of the doctors I’ve see have taken me seriously. But I still have the fear that says I have to understand everything about my tests and diagnoses to make sure I’m not being brushed off
It also doesn’t help that I struggle to explain things in a way that makes sense to others. People don’t really know what to do with “my pain feels like the taste of metal” or “the sound of those old door stopper things when you twang them”. So I spend my time trying to figure out which part of my body is hurting, how other people describe that pain, and then finally trying to pick the word that feels the most accurate from that list. There’s no way I can do all that for each question in a 15 minute appointment, so I try to prepare answers for every question, that are as accurate as possible, before the appointment ever begins
I just can’t stop thinking that maybe, if I can find the right words, we’ll finally figure out the final missing pieces of the puzzle. Because I’ve accumulated at least a half dozen diagnoses in the last ten years but each one came with the caveat of “but that shouldn’t be causing your pain” (though, my last blood test seems to have FINALLY shown enough for a diagnosis of Ankylosing Spondylitis. Just waiting to see if insurance is going to approve the medication 🤞)
All of that to say; yeah, being a patient is the most exhausting job I’ve ever had
Thank you for writing this, as a neuroscience student I've become increasingly concerned with AI psychosis in vulnerable people – especially in cases of schizophrenia as it reaffirms psychotic delusions – but you're right: people have been forced to become their own experts.
The worry of course is if the information they are obtaining is true, or correctly interpreted, but I've never thought about how important it is to properly acknowledge the labour people put in to trying to understand their conditions. Thank you for this enlightening post!
As a complex patient for almost 12 years now, I resonate with almost every word you wrote here!
There’s even more of this for a patient like me who blends conventional and integrative therapies together, because the two sides don’t communicate or collaborate well so it’s on the patient to translate, research interactions between the two and bring their own evidence for why this approach might work.
Thank you for this. For recognizing it, for sharing it, and for seeing your patients differently. Grateful that there are more and more clinicians like you who are recognizing this burden.
I think we can do a much better job on educating patients on how to communicate with their healthcare team and think critically about their health, to maybe remove the need for becoming an expert and enhance initial conversations earlier on.
I was diagnosed with DCIS in May 2025. Then, after a botched biopsy made surgery impossible in November, I had an MRI that found another suspicious tumor that a biopsy showed was a recurrent invasive ductal carcinoma. I had a mastectomy in April and began aromatase inhibitors in June. All the while suffering from chronic IBSD.
Running parallel to that, I am self represented while divorcing my husband. The legal and financial specialization I need is not affordable.
My writing on here provides me with psychological relief from the cognitive exhaustion and trauma of being a professional patient and amateur financial analyst and litigator.
I trained as a minister and chaplain for a reason. It suited my temperament. Medicine, law, and finance were never my forte and yet they have become a part of my life involuntarily out of necessity for survival.
This article is amazing and calls attention to something I've been dealing with daily for the 6+ years since a health breakdown lead to diagnoses of heds/mcas/pots and tons of co-morbid conditions. it can take decades to even get a diagnosis let alone treatment, but even with the official designation, many doctors refuse to order the advanced labs needed to direct treatment. In my personal experience I haven't come across many doctors who have a positive attitude towards self educated patients. They're happy to allow me to do the extra work but they also tend to resent me for knowing more than they do. In some instances, doctors just can't see outside the box or don't wanna go into that much detail with your case, and completely shut you down even if what you are asking for is logical and medically appropriate. I'm careful to respect the doctors' expertise as paramount, but that often means conceding to a half assed work up or a "wait and see" approach that doesn't work for many extremely disabled people. Especially when the cycle goes on endlessly for years and years with no measurable improvements in symptoms. Im Audhd and my personality can rub people the wrong way when I first meet them, so I try not to take Dr rejection personally, but sometimes it really is personal which shouldn't happen in this profession. If a doctor knows they can't help a patient within the scope of their practice, or even if a patient triggers them to the point where the Dr is unwilling to trust or hear them or give them the benefit of the doubt that they know whats going on in their own body, the Dr should refer that patient out to somebody else who can. I have multiple doctors who now refuse to treat me yet also refuse to provide a referral so I can move on, leaving me in a dangerous position. Maybe in the past people expected doctors to be all knowing, God-like figures but nobody expects that anymore. Swallow your pride and admit that you don't know and refer the patients you've left barely treading water somewhere else.
Wow. I've shared this post with everyone I know because it's a topic near to my heart. People comment all the time on the myriad of medical specialties I've dug into for me and my family, never though asking WHY I feel I need to. Thank you.
This resonates with me on two planes: years ago before the internet, somehow I was able to piece together the difficult symptoms that our new son, who had semi-lobar holoprosencephaly (HPE), and was also being treated with DDAVP for DI (diabetes insipidus). Between ages 2 months and 4 years he spent more time feeling sick and sometimes vomiting then he did smiley and happy. At some point I went to our medical school library and learned how to use Medline. (I'm an optometrist but had very little education in endocrinology and ZERO knowledge of HPE.) Searching and reading I became convinced he had SIADH (Syndrome Inappropriate Anti-Diuretic Hormone) and became water intoxicated when we gave him the DDAVP *and* his system released its own ADH whichcaused him to vomit which triggered the ADH to be released 😳; an ugly cycle.
I presented this theory to the 2 endocrinologist on our case and they agreed, but did not agree with how to proceed. In the end my husband and I decided to take him off the DDAVP without telling anyone and manage his Ins & Outs. He has thrived and is nearly 40 years old, though severely disabled and nonverbal, and the joy of our lives and many others.
Now I'm nearly 4 years in with Long-COVID. As you state, my condition makes it very difficult to maintain concentration, understand, and remember what I read. It is frustrating to have so many odd symptoms that doctors just shake their collective heads at and then shrug their shoulders.
Thank you for your advocacy and compassion for those who don't fit the medical model of illness. ❤️
In 2012 I (unusually) went to see my GP about painful joints in my thumbs/wrist; he confirmed what I suspected….osteoarthritis .
He said apart from taking painkillers and ‘keeping moving’ there was nothing he could do….
At age 72 I fiercely resisted the idea that I was doomed forever to painfully useless hands ( I was already dropping things and couldn't turn a key in a lock)
By 2016 I was enrolled in an Ayurvedic retreat in Kerala for the first of 4 annual Panchakarma treatment programmes.
From 2018 I had no more pain in my hands and felt years younger and was already part way through a diploma in Ayurvedic Nutritional Coaching. I qualified in 2021 and really love being able to help people in a holistic way, not only to improve their health but be much more fulfilled.
Those 15 minute visits, doctors must feel like they’re speed dating.
At the doctor today, I see four people before the doctor finally enters. She has to read my chart on the computer to see why I’m there.
In the end, I get the same contempt in a look that I’ve gotten for years. Three trials of statins for high LDL numbers, and the side effects have been intolerable. Nausea, fainting, stif painful muscles like cement. And yet, every visit she tries to make me take the sane drugs.
She then types something into my record, Non-compliant.
This is where I struggle with the “expert patient” framing. Informed patients are absolutely a good thing. But when someone has to become an amateur clinician, researcher, and care coordinator just to be heard or get the right workup, that’s not empowerment. That’s the system shifting more of its job onto the patient.
Double whammy here- I have lupus, and my son has a profound brain injury. I know more about medicine than I ever planned.
As a late diagnosed AuDHD woman possibly living with undiagnosed hEDS for 52 years this resonates with me deeply. As a mother of a recently diagnosed AuDHD child who suffers from debilitating fatigue, brain fog, and extreme chronic pain that could be related to a diagnosed Covid Infection, trauma or simply a hormone imbalance, this resonates to my core.
It has felt like the doctors I've interacted with have lost their curiosity. I watch shows on television that show an ER doctor getting in trouble for going above and beyond for a patient with a cough and expect my primary care doctor will show even more curiosity -- but they don't.
I wish your office was 2100 miles closer.
When people ask me what I do I often joke that my doctors appointments are my full time job. I’ve been lucky that most of the doctors I’ve see have taken me seriously. But I still have the fear that says I have to understand everything about my tests and diagnoses to make sure I’m not being brushed off
It also doesn’t help that I struggle to explain things in a way that makes sense to others. People don’t really know what to do with “my pain feels like the taste of metal” or “the sound of those old door stopper things when you twang them”. So I spend my time trying to figure out which part of my body is hurting, how other people describe that pain, and then finally trying to pick the word that feels the most accurate from that list. There’s no way I can do all that for each question in a 15 minute appointment, so I try to prepare answers for every question, that are as accurate as possible, before the appointment ever begins
I just can’t stop thinking that maybe, if I can find the right words, we’ll finally figure out the final missing pieces of the puzzle. Because I’ve accumulated at least a half dozen diagnoses in the last ten years but each one came with the caveat of “but that shouldn’t be causing your pain” (though, my last blood test seems to have FINALLY shown enough for a diagnosis of Ankylosing Spondylitis. Just waiting to see if insurance is going to approve the medication 🤞)
All of that to say; yeah, being a patient is the most exhausting job I’ve ever had
I'm curious: is this a problem endemic to America, or does it also exist in other countries with healthcare provided by the government?
Thank you for writing this, as a neuroscience student I've become increasingly concerned with AI psychosis in vulnerable people – especially in cases of schizophrenia as it reaffirms psychotic delusions – but you're right: people have been forced to become their own experts.
The worry of course is if the information they are obtaining is true, or correctly interpreted, but I've never thought about how important it is to properly acknowledge the labour people put in to trying to understand their conditions. Thank you for this enlightening post!
As a complex patient for almost 12 years now, I resonate with almost every word you wrote here!
There’s even more of this for a patient like me who blends conventional and integrative therapies together, because the two sides don’t communicate or collaborate well so it’s on the patient to translate, research interactions between the two and bring their own evidence for why this approach might work.
Thank you for this. For recognizing it, for sharing it, and for seeing your patients differently. Grateful that there are more and more clinicians like you who are recognizing this burden.
I think we can do a much better job on educating patients on how to communicate with their healthcare team and think critically about their health, to maybe remove the need for becoming an expert and enhance initial conversations earlier on.
And yet so much is still unknown; we still have to do our homework!
I was diagnosed with DCIS in May 2025. Then, after a botched biopsy made surgery impossible in November, I had an MRI that found another suspicious tumor that a biopsy showed was a recurrent invasive ductal carcinoma. I had a mastectomy in April and began aromatase inhibitors in June. All the while suffering from chronic IBSD.
Running parallel to that, I am self represented while divorcing my husband. The legal and financial specialization I need is not affordable.
My writing on here provides me with psychological relief from the cognitive exhaustion and trauma of being a professional patient and amateur financial analyst and litigator.
I trained as a minister and chaplain for a reason. It suited my temperament. Medicine, law, and finance were never my forte and yet they have become a part of my life involuntarily out of necessity for survival.
This article is amazing and calls attention to something I've been dealing with daily for the 6+ years since a health breakdown lead to diagnoses of heds/mcas/pots and tons of co-morbid conditions. it can take decades to even get a diagnosis let alone treatment, but even with the official designation, many doctors refuse to order the advanced labs needed to direct treatment. In my personal experience I haven't come across many doctors who have a positive attitude towards self educated patients. They're happy to allow me to do the extra work but they also tend to resent me for knowing more than they do. In some instances, doctors just can't see outside the box or don't wanna go into that much detail with your case, and completely shut you down even if what you are asking for is logical and medically appropriate. I'm careful to respect the doctors' expertise as paramount, but that often means conceding to a half assed work up or a "wait and see" approach that doesn't work for many extremely disabled people. Especially when the cycle goes on endlessly for years and years with no measurable improvements in symptoms. Im Audhd and my personality can rub people the wrong way when I first meet them, so I try not to take Dr rejection personally, but sometimes it really is personal which shouldn't happen in this profession. If a doctor knows they can't help a patient within the scope of their practice, or even if a patient triggers them to the point where the Dr is unwilling to trust or hear them or give them the benefit of the doubt that they know whats going on in their own body, the Dr should refer that patient out to somebody else who can. I have multiple doctors who now refuse to treat me yet also refuse to provide a referral so I can move on, leaving me in a dangerous position. Maybe in the past people expected doctors to be all knowing, God-like figures but nobody expects that anymore. Swallow your pride and admit that you don't know and refer the patients you've left barely treading water somewhere else.
Wow. I've shared this post with everyone I know because it's a topic near to my heart. People comment all the time on the myriad of medical specialties I've dug into for me and my family, never though asking WHY I feel I need to. Thank you.
This resonates with me on two planes: years ago before the internet, somehow I was able to piece together the difficult symptoms that our new son, who had semi-lobar holoprosencephaly (HPE), and was also being treated with DDAVP for DI (diabetes insipidus). Between ages 2 months and 4 years he spent more time feeling sick and sometimes vomiting then he did smiley and happy. At some point I went to our medical school library and learned how to use Medline. (I'm an optometrist but had very little education in endocrinology and ZERO knowledge of HPE.) Searching and reading I became convinced he had SIADH (Syndrome Inappropriate Anti-Diuretic Hormone) and became water intoxicated when we gave him the DDAVP *and* his system released its own ADH whichcaused him to vomit which triggered the ADH to be released 😳; an ugly cycle.
I presented this theory to the 2 endocrinologist on our case and they agreed, but did not agree with how to proceed. In the end my husband and I decided to take him off the DDAVP without telling anyone and manage his Ins & Outs. He has thrived and is nearly 40 years old, though severely disabled and nonverbal, and the joy of our lives and many others.
Now I'm nearly 4 years in with Long-COVID. As you state, my condition makes it very difficult to maintain concentration, understand, and remember what I read. It is frustrating to have so many odd symptoms that doctors just shake their collective heads at and then shrug their shoulders.
Thank you for your advocacy and compassion for those who don't fit the medical model of illness. ❤️
I couldn’t finish reading. It triggers my PTSD.
In 2012 I (unusually) went to see my GP about painful joints in my thumbs/wrist; he confirmed what I suspected….osteoarthritis .
He said apart from taking painkillers and ‘keeping moving’ there was nothing he could do….
At age 72 I fiercely resisted the idea that I was doomed forever to painfully useless hands ( I was already dropping things and couldn't turn a key in a lock)
By 2016 I was enrolled in an Ayurvedic retreat in Kerala for the first of 4 annual Panchakarma treatment programmes.
From 2018 I had no more pain in my hands and felt years younger and was already part way through a diploma in Ayurvedic Nutritional Coaching. I qualified in 2021 and really love being able to help people in a holistic way, not only to improve their health but be much more fulfilled.