I no longer see patients but I can’t tell you how many cried in my office simply because I let them tell their whole health story without interrupting, and truly listening. Most of the time I wasn’t even able to provide all the care they needed, but they knew I’d be honest with them and send them in the right direction. I hope your patient is doing much better now 🤍
Dr Zha, please keep sharing your stories, and keep shining your light on the importance of the human and the humane in medicine. Thank you for the gift of your precious time in sharing with us.
My day is made brighter knowing you are doing good in this world
I've had those doctors. What do we patients do when we either don't know what our alternatives are or simply don't have any? How do we say to a person we've been trained to believe as being smarter and more knowledgeable than we are--and quite frequently presenting themselves that way--that we aren't satisfied with the answers we're getting, when, if we can't find someone else, that may mean we've burnt our bridges behind us? I am so. freaking. tired. of trying to navigate through everything I'm dealing with, and my health isn't as bad as many people's, but it *is* complicated.
That's such a hard question. I don't think you CAN do much. I was recently asked on a podcast to give patients advice on how to advocate better for themselves. I got nothing, frankly. I feel patients have been advocating for themselves hard enough. It's time we all do our part and make it easier for them. Of course, many things have to change, the educational system, the elitist culture, the healthcare system as a whole, etc.
I’m so glad to hear you helped that poor girl. But it is a shame that the parents and patients get despondent because they are miserable, in pain and feel like they are being ignored.
I finally had a medical student listen to my decades of strange symptoms and order bloodwork w/iron saturation, 13%. This prompted my GI doc to order a capsule camera for small intestine. That's where they found Crohn's disease. I had almost given up. I'm so incredibly grateful for that medical student 💜
This story is my biggest dream- to find someone to care enough to think a little extra hard about me. Each new doctor is an emotional experience. We never know who we can trust.
I've said thank-you to some of the most terrible people, because we were raised to revere the profession.
Unfortunately, most of the profession doesn't revere us back.
I've had chronic illnesses building for over a decade. Now they feel too large to look at. So many doctors have promised to stick by me to figure out what is going on. They never do.
I'm glad you are different. There is a bit of hope knowing maybe someday I'll fall into the office of someone like you.
Unfortunately, I'm pretty sure I'll be dead before the medical system is willing to care about people like me, and all the other chronic illness victims on this thread. Medicine has chosen to silo itself, not become more enfolding.
I wish I hadn't found out about my disease. Maybe I'd be dead by now and beyond this disaster. I'm so tired I don't want to do this anymore.
I am a retired family nurse practitioner. I diagnosed my son’s asthma when I read a pediatrics text on childhood asthma in graduate school. He had a significant allergy problem. We saw a pediatric allergist whom I questioned about his cough. He said, “Maybe he has asthma”. I asked what I should do and he said tell me if it gets worse. It never got worse but it didn’t get better. A couple years later when I was an NP student I told the doctor he needed to be started on a steroid inhaler and a rescue inhaler. I would call when he needed a burst of steroids. Granted his problems weren’t as severe as the young lady in your post. What I did learn is that allergies, asthma, and eczema are often occur together. I also learned that this is a significant quality of life issue. I tried to treat my patients as aggressively as possible.
I have a rare genetic disease, known to exist in 100 people. My subtype is even rarer, and it’s taken until this year really for people to finally take me seriously.
Unfortunately for me a definitive cure is unavailable and I will die from this eventually. Though finally and thankfully with pain control. It makes severe spastic hemiparesis that I have easier and more possible to tolerate.
Even so. A lifetime of being gaslit and suffering in plain sight. I hope it is better for the next severe case like mine. And I hope it’s better for me going forward, even as I will only progressively get worse.
Thanks for pushing. Thanks for every doctor that does push. So grateful for my primary doctor.
They sure do. Had to move states and everything to get the care team I have, and even then it took time and disease progression, but we got there in the end ish.
But yes, 100 people in the world! It was finally identified by genetic testing. My doctor was so excited to finally get a diagnosis, then was so crushed because it didn’t come with a ready made treatment plan. And worse, is untreatable in the sense of being stoppable. But at least I finally have the exact diagnosis and subtype and that helps a lot versus not knowing and specialists unable to decide if it was “organic” versus not as if that’s really a thing.
I quickly stop scrolling if, upon opening my phone, I find that you have posted something new. That’s how much I look forward to reading your beautiful sharing. You’re quite the Doctor… even miraculous! I can feel the healing balm of your tender spirit even though I’ve never even been in your clinic 🩺👩🏻⚕️🩺
wow thank you!! First of all thank you for reading my stuff. It still amazes me that people do. Second of all, you are so kind! I will keep learning (and keep making mistakes lol).
Thanks for the kind reply. I mean every word. You are truly special and I count ‘finding you’ among my many blessings on this Thanksgiving Day. The only people who make no mistakes are those who do nothing at all. Mistakes do teach us, don’t they? 🫂
I love your posts and column and your occasional pictures. I am a middle aged white lady who is generally healthy and yet often feel dismissed by my health care providers. I can only imagine how teens, people of color, people who are still learning English, etc must feel. You are a gem.
Thank you for saying that and being an ally! Me too, though I am a woman of color, I can only imagine (and witness) how people dealing with chronic illnesses feel...I am also simultaneously scared of becoming ill....
Doctors act like gatekeepers half the time. It’s frustrating. You are going to blow it up. Thank goddess. Chronically ill all my life, I have learned to heal myself. I have probably had 3 good doctors in my life. I’m 40, and including the doctors who attended my 3 births and my children’s doctors. 3. Out of hundreds. You are one of the good ones.
Well, obviously so…lol. But…don’t dwell there for a moment longer. It takes much courage to do what you are doing, don’t spend your energy on shame. Aka “the wound that is never satisfied”. You are too important in the system. I hope you inspire others within. Thanks for being you.
Hell is a fine place to have a cup of tea, just don’t stay for dinner…
Thank you so much!! I am not there yet haha. Just yesterday someone pointed out on Twitter that some of my languages on my polls have relics of patient blaming. Leaning as we speak!
Yes and no. I tell my patients that being a doctor is miserable until the first patient comes in. I’ll share some stories on my ‘stack about patients who taught me lessons.
I no longer see patients but I can’t tell you how many cried in my office simply because I let them tell their whole health story without interrupting, and truly listening. Most of the time I wasn’t even able to provide all the care they needed, but they knew I’d be honest with them and send them in the right direction. I hope your patient is doing much better now 🤍
Dr Zha, please keep sharing your stories, and keep shining your light on the importance of the human and the humane in medicine. Thank you for the gift of your precious time in sharing with us.
My day is made brighter knowing you are doing good in this world
Thank you CG, you've always been so kind!!
I've had those doctors. What do we patients do when we either don't know what our alternatives are or simply don't have any? How do we say to a person we've been trained to believe as being smarter and more knowledgeable than we are--and quite frequently presenting themselves that way--that we aren't satisfied with the answers we're getting, when, if we can't find someone else, that may mean we've burnt our bridges behind us? I am so. freaking. tired. of trying to navigate through everything I'm dealing with, and my health isn't as bad as many people's, but it *is* complicated.
Yes. This. It feels like a battlefield. Makes no sense.
That's such a hard question. I don't think you CAN do much. I was recently asked on a podcast to give patients advice on how to advocate better for themselves. I got nothing, frankly. I feel patients have been advocating for themselves hard enough. It's time we all do our part and make it easier for them. Of course, many things have to change, the educational system, the elitist culture, the healthcare system as a whole, etc.
I’m so glad to hear you helped that poor girl. But it is a shame that the parents and patients get despondent because they are miserable, in pain and feel like they are being ignored.
I know, wish it didn't have to come to that!
Such a powerful dad, saying the hard thing! I'm so glad he spoke, and so glad you listened (but no surprised - you're a great listener!).
I know!! He was a boss! Thank you for reading. But really what do you think about the break lines lol are they weird??
Hahaha I did notice them - I think they're sleek! They definitely made for smoother reading.
Hmm! Maybe I will use them now. Brace yourself!!
This essay brought tears to me. A rarity for me in my old age.Thank you for listening.
Broke my heart, too!! Thank you for reading!!
I finally had a medical student listen to my decades of strange symptoms and order bloodwork w/iron saturation, 13%. This prompted my GI doc to order a capsule camera for small intestine. That's where they found Crohn's disease. I had almost given up. I'm so incredibly grateful for that medical student 💜
I hope medical education hasn’t trained humanity out of this medical student 🥶🥶🥶🥶
This story is my biggest dream- to find someone to care enough to think a little extra hard about me. Each new doctor is an emotional experience. We never know who we can trust.
I've said thank-you to some of the most terrible people, because we were raised to revere the profession.
Unfortunately, most of the profession doesn't revere us back.
I've had chronic illnesses building for over a decade. Now they feel too large to look at. So many doctors have promised to stick by me to figure out what is going on. They never do.
I'm glad you are different. There is a bit of hope knowing maybe someday I'll fall into the office of someone like you.
"I've said thank you to some of the most terrible people"
I think I have too. But not as a patient. But we are all going to become patients at some point. We have to change the system for all of us.
Unfortunately, I'm pretty sure I'll be dead before the medical system is willing to care about people like me, and all the other chronic illness victims on this thread. Medicine has chosen to silo itself, not become more enfolding.
I wish I hadn't found out about my disease. Maybe I'd be dead by now and beyond this disaster. I'm so tired I don't want to do this anymore.
I am a retired family nurse practitioner. I diagnosed my son’s asthma when I read a pediatrics text on childhood asthma in graduate school. He had a significant allergy problem. We saw a pediatric allergist whom I questioned about his cough. He said, “Maybe he has asthma”. I asked what I should do and he said tell me if it gets worse. It never got worse but it didn’t get better. A couple years later when I was an NP student I told the doctor he needed to be started on a steroid inhaler and a rescue inhaler. I would call when he needed a burst of steroids. Granted his problems weren’t as severe as the young lady in your post. What I did learn is that allergies, asthma, and eczema are often occur together. I also learned that this is a significant quality of life issue. I tried to treat my patients as aggressively as possible.
Because you want to treat you patients like you own kid!!
and that's amazing <3
I have a rare genetic disease, known to exist in 100 people. My subtype is even rarer, and it’s taken until this year really for people to finally take me seriously.
Unfortunately for me a definitive cure is unavailable and I will die from this eventually. Though finally and thankfully with pain control. It makes severe spastic hemiparesis that I have easier and more possible to tolerate.
Even so. A lifetime of being gaslit and suffering in plain sight. I hope it is better for the next severe case like mine. And I hope it’s better for me going forward, even as I will only progressively get worse.
Thanks for pushing. Thanks for every doctor that does push. So grateful for my primary doctor.
That makes a difference.
Wow 100 people in the world?? 😰 I’m glad you have a good one as your primary care team and hope they advocate for you!
They sure do. Had to move states and everything to get the care team I have, and even then it took time and disease progression, but we got there in the end ish.
But yes, 100 people in the world! It was finally identified by genetic testing. My doctor was so excited to finally get a diagnosis, then was so crushed because it didn’t come with a ready made treatment plan. And worse, is untreatable in the sense of being stoppable. But at least I finally have the exact diagnosis and subtype and that helps a lot versus not knowing and specialists unable to decide if it was “organic” versus not as if that’s really a thing.
As always, Dr. Zha, beautifully written and full of compassion and heart. 💚
🥹🥹🩵🩵
I quickly stop scrolling if, upon opening my phone, I find that you have posted something new. That’s how much I look forward to reading your beautiful sharing. You’re quite the Doctor… even miraculous! I can feel the healing balm of your tender spirit even though I’ve never even been in your clinic 🩺👩🏻⚕️🩺
wow thank you!! First of all thank you for reading my stuff. It still amazes me that people do. Second of all, you are so kind! I will keep learning (and keep making mistakes lol).
There are tens of thousands of people out here longing for a doctor to hear them. I'm not surprised you are gaining a readership.
Plus, stickers.
Thanks for the kind reply. I mean every word. You are truly special and I count ‘finding you’ among my many blessings on this Thanksgiving Day. The only people who make no mistakes are those who do nothing at all. Mistakes do teach us, don’t they? 🫂
I love your posts and column and your occasional pictures. I am a middle aged white lady who is generally healthy and yet often feel dismissed by my health care providers. I can only imagine how teens, people of color, people who are still learning English, etc must feel. You are a gem.
Thank you for saying that and being an ally! Me too, though I am a woman of color, I can only imagine (and witness) how people dealing with chronic illnesses feel...I am also simultaneously scared of becoming ill....
Doctors act like gatekeepers half the time. It’s frustrating. You are going to blow it up. Thank goddess. Chronically ill all my life, I have learned to heal myself. I have probably had 3 good doctors in my life. I’m 40, and including the doctors who attended my 3 births and my children’s doctors. 3. Out of hundreds. You are one of the good ones.
Thank you Sara! I am going to blow it up lol! But I think I used to be one of the bad ones....
Well, obviously so…lol. But…don’t dwell there for a moment longer. It takes much courage to do what you are doing, don’t spend your energy on shame. Aka “the wound that is never satisfied”. You are too important in the system. I hope you inspire others within. Thanks for being you.
Hell is a fine place to have a cup of tea, just don’t stay for dinner…
Thank you for sharing this story...you're what a doctor should be.
Thank you so much!! I am not there yet haha. Just yesterday someone pointed out on Twitter that some of my languages on my polls have relics of patient blaming. Leaning as we speak!
There is so much joy to a care episode well done! I’m struggling with the idea of retirement because of the joy of the vocation.
But retirement sounds much better lol...
Yes and no. I tell my patients that being a doctor is miserable until the first patient comes in. I’ll share some stories on my ‘stack about patients who taught me lessons.