I'm a young person and a scientist, which has placed me as an odd sort of outsider in my medical journey. While human medicine will never be my specialty, I know a lot from my courses about illness and health, and I read the literature when I can. It's led to my knowledge being dismissed even when I base it on peer reviewed sources--things like masking sometimes lowering viral load (Goyal et al. 2021) with potential implications for infection severity (my words were, "I get sick less severely when I wear a mask to my courses, though I still get colds and infections every week or so").
Even though I'm an expert in my lived experience, the one who's there day-by-day, taking notes, doing research, even though I've been a living human with a curious mind and a sick body for two decades now, I'm the outsider. I'm the kid who can't really be involved in the murmured medical conversations that happen between doctors outside my door. I'm the one who's always spoken over. I'm the one who still has to make their father come with them to medical appointments because he's an old white man who isn't in pain constantly and thus has the spoons and the privilege to get doctors to listen to my needs.
Thank you for articulating this so powerfully. The dismissal of lived, researched, hard-earned knowledge you are describing implies nothing about the quality of your insight, it’s all anout medicine’s discomfort with patient expertise, especially when it comes from someone young or chronically ill. The fact that you need your father’s presence to be heard speaks volumes about how power still operates in clinical spaces. Your observations are real. Your knowledge is real. And you should never have to borrow someone else’s authority to have your body taken seriously!!
There were several points in this essay when I cried. I was standing in the shadows of the examining room when you heard sniffling from the family. They were relieved someone was finally listening to them.
I have been that mother.
I stood next to you feeling your frustration with a hierarchy that was not helping you get this child seen as soon as she needed seeing.
I have been a nurse standing by a bedside in Peds ICU at 2 am, trying to get a doctor to act on my gut feeling. Fortunately, a pediatric resident popped in letting me know he would shake that tree until a thoracic surgeon resident fell out of it. The only one that fell out was the chief resident, but the lower limbs on that tree were told in no uncertain terms they would never ignore a PICU nurse in the middle of the night ever again.
You are an amazing writer and even more amazing physician.
Nancy, thank you for being such a loyal reader, and for being so generous with your stories and your words. I felt every scene you shared. "I have been that mother" and "I have been that nurse" landed with such force, because they hold so much lived truth.
I’m especially grateful for a fellow writer who thinks in metaphors 🙂. The way you described shaking the tree until someone finally fell out is exactly how it feels to push against hierarchy when time, intuition, and a child’s safety are on the line. That image is simultaneously hilarious and true!
This essay brought tears to my eyes. Being the person eager to help is my intention; sometimes the endless looping Beethoven (or Cisco song) zaps my eagerness. Thank you for the reminder that we all can be part of shifting the culture towards assuming best intent and eagerness to help.
What a fabulous post Zed Zah, MD! I had no idea one could “feel” while reading a post. Of course it is your post. “The angel with broken wings” set a relatable beginning. Can the AMA ban music on hold entirely? I’ll close by offering my admiration for your wisdom and composure in challenging circumstances!
When it feels like Healthcare continues to let patients fade away into invisibility, your writing shows how important and powerful it is to feel SEEN. Thank you for your time, your care, your compassion, and your words. It truly is a light that is so needed
Cheryl, your words remind me why it matters to keep writing, and to keep listening. I’m deeply grateful you’re here, reading and reflecting alongside me.
As a (non-practicing) nurse, this article tore at my heartstrings. I know exactly what you're talking about. I moved into education after teaching medical assisting to adults, and I've experienced the same with students who need intervention and went to great lenghts to get them the help they needed.
It’s 22 years since my family’s heartbreaking story was published in the book Privileged Presence, Personal Stories of Connections in Health Care by Liz Crocker. After all the years - so much talk, so little change.
I have felt like an outsider. Its a long story. I had gotten a mild concussion. It was a weird accident where I had hit the back of my head on the dryer door on a stacked washer/dryer combo. I ended up bent over.
I went to the experts in the area in concussions a few weeks later. By this time, I had positional headaches and if I was upright for too long or my head was in certain positions for too long, my speech was affected. I also had increased balance problems. I was told this was all related to the concussion. I didn't think so because I'd had a spinal headache when I'd had my second child by c-section and the epidural went too far and spinal fluid leaked.
Anyway, symptoms didn't improve so I went back and saw a different doc there. He put me through a few tests. Heard what I was saying. Told me that I had post-concussion syndrome. Thos was about 5 months later.
I continued to have problems. I went to my primary doc, whi is wonderful. He sent me to a neurologist, who is also wonderful. It just took months to get in. She listened. Checked me for POTS and other things. Believed me! Sent me to a neuroradiologist who did a few things and immediately could tell I had problems and scheduled me for tests.
Turns out I was right all along. I had a leak in my spinal column at T7. The neuroradiologist patched the same day and I was headache free. This was about 18 months after the concussion.
Nancy, thank you for sharing this. What stands out for me is how much harm came from not being believed, and how much healing began the moment someone listened. You knew your body and you were right all along. While I’m glad you finally found clinicians who heard you, I want to acknowledge that 18 months is far too long to carry that kind of doubt and suffering. Your story is such a powerful reminder of why believing patients matters. Thank you.
My mom managed her chronic illnesses and spinal issues for 50+ years. She can't do it now. This early 60 yr old daughter is dialing and dialing hoping an actual human picks up (when someone does I am always surprised - isn't that a sad statement?). Voicemails left with pain management, heart center, the pharmacy. Phone apps and patient portals are a tad helpful. But it is getting to a HUMAN and making the case for my mom that makes the difference each and every time.
It is a sad statement! What you’re describing is the exhausting, invisible work of access: dialing endlessly, navigating portals, leaving voicemails, hoping a real human answers and listens. The fact that your mom managed complex illness for decades and now struggles because the system made her says so much about what’s broken. I’m grateful she has you advocating for her, and angry that she has to.
A really great primary physician I know left the corporate medical group and opened his own practice accepting no insurance of any kind, charging a contracted monthly payment. It provides "unrestricted access to a provider who puts YOU at the center of the relationship". Love the concept. Not so thrilled about the contracted monthly cost but for someone with complex medical issues, seeing a variety of specialists who are each prescribing meds, it may be the smartest medical decision one can make. What do you think about that Dr Zha?
My husband had a sudden attack of A-Fib. He spent 3 days in the hospital before he was released. His doctor said her office would call with an appointment date. A week later, still no call. We called and called and called her office. Canned message, wait music and then disconnected. After three days of that we had enough. I had to drive to the doctors office to make the appointment. I love his doctor, not so much her office.
That’s such a familiar and infuriating story. After something as frightening as a sudden A-fib hospitalization, the burden should never fall on families to chase down follow-up care. The fact that you had to physically drive to the office just to secure an appointment says everything about how broken access has become.
Yes! Both my husband and I have taken such measures - multiple times with several different practices. The office staff are always very helpful though they arw taken aback that one has gone to such a length.
Seems many practices prefer folks get online to make appointments. I feel bad for the elderly who often are unable to navigate tech.
I remember being amazed last year that my oncology surgeon could just text/message to ask someone questions while sitting talking to me and get an instant reply. We have the technology. (Still took 6 weeks to schedule surgery.)
I thought about writing "We have the technology" as a punch line at the very end of this newsletter but thought I'd better dial down my on sarcasm lol!! Great minds.
Yes. I tend to give as complete history of my symptom(s) with timing. Nurse only passed on what in her estimation was pertinent. No call from doctor. Had to call another doctor to explain. Asked me to have this doctor call him. He said to tell her to call him as he was unable to play telephone games (independent physician).
Not the first time ran into this with this particular doctor/nurse combo. No longer my doctor.
Your content should serve as required CE for cultural competency and implicit bias for all healthcare professions. Just saying.
That’s very kind of you!! Who knows, maybe one day it will. 😅
It would be so much more fun to read and so much more educational than the boring content we have to go through now!
Just an excellent read. Should be mandatory for all.
Thank you 😎🥹
I'm a young person and a scientist, which has placed me as an odd sort of outsider in my medical journey. While human medicine will never be my specialty, I know a lot from my courses about illness and health, and I read the literature when I can. It's led to my knowledge being dismissed even when I base it on peer reviewed sources--things like masking sometimes lowering viral load (Goyal et al. 2021) with potential implications for infection severity (my words were, "I get sick less severely when I wear a mask to my courses, though I still get colds and infections every week or so").
Even though I'm an expert in my lived experience, the one who's there day-by-day, taking notes, doing research, even though I've been a living human with a curious mind and a sick body for two decades now, I'm the outsider. I'm the kid who can't really be involved in the murmured medical conversations that happen between doctors outside my door. I'm the one who's always spoken over. I'm the one who still has to make their father come with them to medical appointments because he's an old white man who isn't in pain constantly and thus has the spoons and the privilege to get doctors to listen to my needs.
Thank you for articulating this so powerfully. The dismissal of lived, researched, hard-earned knowledge you are describing implies nothing about the quality of your insight, it’s all anout medicine’s discomfort with patient expertise, especially when it comes from someone young or chronically ill. The fact that you need your father’s presence to be heard speaks volumes about how power still operates in clinical spaces. Your observations are real. Your knowledge is real. And you should never have to borrow someone else’s authority to have your body taken seriously!!
There were several points in this essay when I cried. I was standing in the shadows of the examining room when you heard sniffling from the family. They were relieved someone was finally listening to them.
I have been that mother.
I stood next to you feeling your frustration with a hierarchy that was not helping you get this child seen as soon as she needed seeing.
I have been a nurse standing by a bedside in Peds ICU at 2 am, trying to get a doctor to act on my gut feeling. Fortunately, a pediatric resident popped in letting me know he would shake that tree until a thoracic surgeon resident fell out of it. The only one that fell out was the chief resident, but the lower limbs on that tree were told in no uncertain terms they would never ignore a PICU nurse in the middle of the night ever again.
You are an amazing writer and even more amazing physician.
Nancy, thank you for being such a loyal reader, and for being so generous with your stories and your words. I felt every scene you shared. "I have been that mother" and "I have been that nurse" landed with such force, because they hold so much lived truth.
I’m especially grateful for a fellow writer who thinks in metaphors 🙂. The way you described shaking the tree until someone finally fell out is exactly how it feels to push against hierarchy when time, intuition, and a child’s safety are on the line. That image is simultaneously hilarious and true!
Bless you for not giving up!!!
This essay brought tears to my eyes. Being the person eager to help is my intention; sometimes the endless looping Beethoven (or Cisco song) zaps my eagerness. Thank you for the reminder that we all can be part of shifting the culture towards assuming best intent and eagerness to help.
Ah the Cisco song 🤮🤮🤮
What a fabulous post Zed Zah, MD! I had no idea one could “feel” while reading a post. Of course it is your post. “The angel with broken wings” set a relatable beginning. Can the AMA ban music on hold entirely? I’ll close by offering my admiration for your wisdom and composure in challenging circumstances!
Ban on hold music LOL, we have found out mission!
I’m on it, Zed Zah, MD!
When it feels like Healthcare continues to let patients fade away into invisibility, your writing shows how important and powerful it is to feel SEEN. Thank you for your time, your care, your compassion, and your words. It truly is a light that is so needed
Cheryl, your words remind me why it matters to keep writing, and to keep listening. I’m deeply grateful you’re here, reading and reflecting alongside me.
Thank you for this! It so added to my understanding of how different medical systems work or don't work together!
As a (non-practicing) nurse, this article tore at my heartstrings. I know exactly what you're talking about. I moved into education after teaching medical assisting to adults, and I've experienced the same with students who need intervention and went to great lenghts to get them the help they needed.
And you have changed lives!!!
It’s 22 years since my family’s heartbreaking story was published in the book Privileged Presence, Personal Stories of Connections in Health Care by Liz Crocker. After all the years - so much talk, so little change.
I have felt like an outsider. Its a long story. I had gotten a mild concussion. It was a weird accident where I had hit the back of my head on the dryer door on a stacked washer/dryer combo. I ended up bent over.
I went to the experts in the area in concussions a few weeks later. By this time, I had positional headaches and if I was upright for too long or my head was in certain positions for too long, my speech was affected. I also had increased balance problems. I was told this was all related to the concussion. I didn't think so because I'd had a spinal headache when I'd had my second child by c-section and the epidural went too far and spinal fluid leaked.
Anyway, symptoms didn't improve so I went back and saw a different doc there. He put me through a few tests. Heard what I was saying. Told me that I had post-concussion syndrome. Thos was about 5 months later.
I continued to have problems. I went to my primary doc, whi is wonderful. He sent me to a neurologist, who is also wonderful. It just took months to get in. She listened. Checked me for POTS and other things. Believed me! Sent me to a neuroradiologist who did a few things and immediately could tell I had problems and scheduled me for tests.
Turns out I was right all along. I had a leak in my spinal column at T7. The neuroradiologist patched the same day and I was headache free. This was about 18 months after the concussion.
Nancy, thank you for sharing this. What stands out for me is how much harm came from not being believed, and how much healing began the moment someone listened. You knew your body and you were right all along. While I’m glad you finally found clinicians who heard you, I want to acknowledge that 18 months is far too long to carry that kind of doubt and suffering. Your story is such a powerful reminder of why believing patients matters. Thank you.
My mom managed her chronic illnesses and spinal issues for 50+ years. She can't do it now. This early 60 yr old daughter is dialing and dialing hoping an actual human picks up (when someone does I am always surprised - isn't that a sad statement?). Voicemails left with pain management, heart center, the pharmacy. Phone apps and patient portals are a tad helpful. But it is getting to a HUMAN and making the case for my mom that makes the difference each and every time.
It is a sad statement! What you’re describing is the exhausting, invisible work of access: dialing endlessly, navigating portals, leaving voicemails, hoping a real human answers and listens. The fact that your mom managed complex illness for decades and now struggles because the system made her says so much about what’s broken. I’m grateful she has you advocating for her, and angry that she has to.
A really great primary physician I know left the corporate medical group and opened his own practice accepting no insurance of any kind, charging a contracted monthly payment. It provides "unrestricted access to a provider who puts YOU at the center of the relationship". Love the concept. Not so thrilled about the contracted monthly cost but for someone with complex medical issues, seeing a variety of specialists who are each prescribing meds, it may be the smartest medical decision one can make. What do you think about that Dr Zha?
I need to learn a bit more about direct patient care (DPC) model before I say anything! I have mixed feelings. 😅
My husband had a sudden attack of A-Fib. He spent 3 days in the hospital before he was released. His doctor said her office would call with an appointment date. A week later, still no call. We called and called and called her office. Canned message, wait music and then disconnected. After three days of that we had enough. I had to drive to the doctors office to make the appointment. I love his doctor, not so much her office.
That’s such a familiar and infuriating story. After something as frightening as a sudden A-fib hospitalization, the burden should never fall on families to chase down follow-up care. The fact that you had to physically drive to the office just to secure an appointment says everything about how broken access has become.
Yes! Both my husband and I have taken such measures - multiple times with several different practices. The office staff are always very helpful though they arw taken aback that one has gone to such a length.
Seems many practices prefer folks get online to make appointments. I feel bad for the elderly who often are unable to navigate tech.
Yes! I’ve seen so many elderly people struggle with the kiosk check-in nearly every doctors office has now.
Can confirm. I’m extremely Technically able yet have to constantly fight to be heard.
I so appreciate your perspectives and sharing. Thank you. 😊
And I appreciate you for reading!!
I remember being amazed last year that my oncology surgeon could just text/message to ask someone questions while sitting talking to me and get an instant reply. We have the technology. (Still took 6 weeks to schedule surgery.)
I thought about writing "We have the technology" as a punch line at the very end of this newsletter but thought I'd better dial down my on sarcasm lol!! Great minds.
Yes. I tend to give as complete history of my symptom(s) with timing. Nurse only passed on what in her estimation was pertinent. No call from doctor. Had to call another doctor to explain. Asked me to have this doctor call him. He said to tell her to call him as he was unable to play telephone games (independent physician).
Not the first time ran into this with this particular doctor/nurse combo. No longer my doctor.