Patients and caregivers writing on KevinMD about the experience of illness and the health care system from the other side of the exam table: navigating care, the doctor-patient relationship, being heard, and what patients want physicians to understand. Physicians who have become patients write here too. For the record of what pain patients and physicians have said to each other about opioids and chronic pain since 2007, with patient authors cited at the same weight as physicians, see Opioids: what physicians and pain patients say, in their own words. For what patients, families, and physicians have said about dying, hospice, and the decisions families face at the end of life, see End of life: what physicians say, in their own words. For what women and the physicians who treat them have said about pregnancy, menopause, and the conditions dismissed for years, see Women's health: what physicians say, in their own words. For what physicians have said about consent, honesty, and who decides, see Medical ethics: what physicians say, in their own words.
My phone lit up in the dormitory: "Can you come back after camp? Mom needs you to help persuade Grandma." I was at a summer program in Seattle. I booked the earliest flight I could, already marshaling arguments in my…
My phone lit up in the dormitory: “Can you come back after camp? Mom needs you to help persuade Grandma.”
I was at a summer program in Seattle. I booked the earliest flight I could, already marshaling arguments in my head: statistics on cognitive decline, studies about social engagement, the kind of evidence-based reasoning I had absorbed from years of watching people around me in Silicon Valley try to optimize everything, …
In October 2024, I finally heard the word that made sense of five years of confusion: Parkinson's. For years, my symptoms didn't align with the diagnoses I was given, and each specialist saw only a piece of the puzzle. What…
In October 2024, I finally heard the word that made sense of five years of confusion: Parkinson’s. For years, my symptoms didn’t align with the diagnoses I was given, and each specialist saw only a piece of the puzzle. What changed everything was the moment a movement-disorder specialist looked at my symptoms as a whole and recognized the pattern immediately.
As a young person living with chronic pain, I entered a health care system that was built to find explanations to clinical problems. That is, of course, what medicine is supposed to do. Physicians are trained to identify patterns, order…
As a young person living with chronic pain, I entered a health care system that was built to find explanations to clinical problems. That is, of course, what medicine is supposed to do. Physicians are trained to identify patterns, order tests, interpret results, establish diagnoses, and develop treatment plans. When those pieces fit together, the process can feel almost reassuring. There is a problem; there is an explanation; and there …
I look toward the darkening sky As evening begins to gather, Layers of pale blue, soft gray, And rose spilling across the horizon, Colors so gentle They seem to beg me, Set it down. Set aside the fear that has…
I look toward the darkening sky
As evening begins to gather,
Layers of pale blue, soft gray,
And rose spilling across the horizon,
Colors so gentle
They seem to beg me,
Set it down.
Set aside the fear that has wrapped itself
Around me like a python,
Tightening its grip
Until even my heart forgets
How to breathe.
Fear is an evil thing
When it takes up residence
Inside the mind.
It comes in the waking hours
Without invitation,
Turning ordinary thoughts into daggers,
Each one sharpened against …
I have never asked medicine to promise me a cure. I have asked it to help me stay alive long enough to come home to my children. My medical record is not subtle. Recurrent pancreatitis led to sepsis and multi-organ…
I have never asked medicine to promise me a cure. I have asked it to help me stay alive long enough to come home to my children.
My medical record is not subtle. Recurrent pancreatitis led to sepsis and multi-organ failure in 2016, a Whipple procedure in 2017, and a total pancreatectomy in 2021. I now have no functioning pancreas, insulin-deficient type 3c diabetes, severely altered gastrointestinal anatomy, and an inability …
In most medical practices, daily operations rely on a familiar routine. Information moves between teams as appointments begin, and direct care continues alongside the administrative tasks that support it. These processes were designed years ago, built around historical demands and…
In most medical practices, daily operations rely on a familiar routine. Information moves between teams as appointments begin, and direct care continues alongside the administrative tasks that support it. These processes were designed years ago, built around historical demands and earlier models of care delivery. As patient needs change and clinical pressures grow more complex, the supporting systems beneath them do not always keep pace. Gaps begin to appear in …
For decades, we have been told the stories of medicine through the eyes of the people who provide it. Medical dramas place doctors and nurses at the center of the narrative: the brilliant surgeon making impossible decisions, the exhausted emergency…
For decades, we have been told the stories of medicine through the eyes of the people who provide it. Medical dramas place doctors and nurses at the center of the narrative: the brilliant surgeon making impossible decisions, the exhausted emergency physician racing against time, the nurse carrying the emotional weight of caring for patients through crisis. Even in today’s most authentic medical dramas, including The Pitt, patients are often catalysts …
About a year ago, KevinMD published an article that I wrote about avoiding online scams when one is highly visible in media as a patient advocate. During that year, I've come to recognize that I should have taken more of…
About a year ago, KevinMD published an article that I wrote about avoiding online scams when one is highly visible in media as a patient advocate. During that year, I’ve come to recognize that I should have taken more of my own advice on the subject.
I have also learned that the technology supporting online criminals has expanded at a far faster rate than I’d anticipated. AI-based search engines can …
I have spent years in front of cameras. Fashion events, interviews, photographs, social media, and meetings are part of my professional life, so I have always been conscious of my smile. I wanted it to look beautiful, modern, and natural,…
I have spent years in front of cameras. Fashion events, interviews, photographs, social media, and meetings are part of my professional life, so I have always been conscious of my smile. I wanted it to look beautiful, modern, and natural, not like a row of extremely white, identical teeth. I wanted a smile that suited my face and made me feel confident whenever I laughed, spoke, or saw myself in …
There's a particular bit of conversation I hope never to hear when my doctors are discussing surgery or testing. Not the details of the procedure. Not the possible outcome. Not the pain (and let's be real, we all know "some…
There’s a particular bit of conversation I hope never to hear when my doctors are discussing surgery or testing. Not the details of the procedure. Not the possible outcome. Not the pain (and let’s be real, we all know “some discomfort” is actually “pain”). It’s the post-op directions that pose a conundrum: “You’ll need someone to drive you home.”
Nothing sparks dread and uncertainty for me like that statement. It’s a …
An excerpt from A Caregiver's Love Story. Dying and introspection happening at the same time were a dual reality that I found impossible to ignore when Bill was not doing well. As Bill's poor prognosis and impending death began to…
Dying and introspection happening at the same time were a dual reality that I found impossible to ignore when Bill was not doing well. As Bill’s poor prognosis and impending death began to reflect on our life, it was getting harder to respond to the living as we had in the past. Bill seemed to be pulling away from everyone he …
Just over seven years ago, on April 22nd, my father heralded his 88th birthday with a thoracentesis to drain the fluid from his lungs. On May 3rd, less than two weeks later, he died, due to a blockage in his…
Just over seven years ago, on April 22nd, my father heralded his 88th birthday with a thoracentesis to drain the fluid from his lungs. On May 3rd, less than two weeks later, he died, due to a blockage in his abdomen leading to sepsis, most likely from two 20-plus-year-old sarcoma surgeries.
Between these events, he went through a series of seemingly unstoppable medical issues. There was the discovery of that sarcoma …
The passage through life is, at times, exciting, stressful, and confusing. Like being on a roller coaster ride: strapped in, climbing up to the high peaks, and surging down to the valleys. It's a ride where I hang on for…
The passage through life is, at times, exciting, stressful, and confusing. Like being on a roller coaster ride: strapped in, climbing up to the high peaks, and surging down to the valleys. It’s a ride where I hang on for dear life with the hope I can endure the trip until it ends. Don’t get me wrong, I do utter intermittent screams of joy here and there, but I’m happy …
By definition, diagnosis is “the identification of the nature of an illness or other problem by examination of the symptoms.” Unfortunately, that is akin to saying that cooking is the process of examining the ingredients. As a result, there is…
By definition, diagnosis is “the identification of the nature of an illness or other problem by examination of the symptoms.” Unfortunately, that is akin to saying that cooking is the process of examining the ingredients. As a result, there is a tendency to rush to treatment when the symptoms are obvious. When the treatment is not effective or the symptoms are less than obvious, the definition of diagnosis does …
I awake each day, looking for the sunlight to brighten my life, just as you may do. I wonder who I will meet today who might have an impact on my life, just as it may be for you. I…
I awake each day, looking for the sunlight to brighten my life, just as you may do.
I wonder who I will meet today who might have an impact on my life, just as it may be for you.
I organize in my mind my “to do” list for the day … all the things that I will try to accomplish, promising my best effort, just like you.
One of the difficulties faced by those of us who are chronically ill (which includes chronic pain) is that others don’t understand what we’re going through. Our culture does a poor job of educating people about health challenges even though…
One of the difficulties faced by those of us who are chronically ill (which includes chronic pain) is that others don’t understand what we’re going through. Our culture does a poor job of educating people about health challenges even though they’re a natural part of the human condition.
We wish with all our hearts that others understood these four things.
1. When you’re chronically ill, you’re likely to look fine. When I …
Oh no, it's a doctor hopper. You know who I'm talking about: the patients with twenty previous doctors documented in their chart. The ones who took years to be diagnosed. The ones who still have not been diagnosed, but insist…
Oh no, it’s a doctor hopper. You know who I’m talking about: the patients with twenty previous doctors documented in their chart. The ones who took years to be diagnosed. The ones who still have not been diagnosed, but insist something is wrong. They’re just jumping around until they get their way, you seethe.
Really?
Every doctor’s appointment is a commitment of time and money for a patient. I think I speak …
I spent the first three days sitting next to my dad's hospital bed, watching his chest rise and fall slowly. He was asleep the majority of the time, fighting off something unknown. Anytime he moved, I jumped up from my…
I spent the first three days sitting next to my dad’s hospital bed, watching his chest rise and fall slowly. He was asleep the majority of the time, fighting off something unknown. Anytime he moved, I jumped up from my chair and stood where he could see me just in case his eyes fluttered open for a split second. I wanted him to know that I was there, that I …
A recent article in Smithsonian Magazine lauded a man in Indonesia for removing a motorcycle tire that had been stuck around a crocodile's neck for six years. Known by locals as buaya kalung ban, which means "crocodile with a tire…
A recent article in Smithsonian Magazine lauded a man in Indonesia for removing a motorcycle tire that had been stuck around a crocodile’s neck for six years. Known by locals as buaya kalung ban, which means “crocodile with a tire necklace,” the reptile had successfully thwarted previous rescue attempts.
Though the outcome was considered a success – not once did anyone stop to consider whether the crocodile …
My husband Jeremy and I stood just inside the entrance of the NICU, between the front desk where we used to get our bright orange stickers, permitting our entry as proud parents of Reed Robinson, Room 363, and the washing…
My husband Jeremy and I stood just inside the entrance of the NICU, between the front desk where we used to get our bright orange stickers, permitting our entry as proud parents of Reed Robinson, Room 363, and the washing station, where we meticulously washed away any germs that could harm him. It had been about a week since Reed took his last breath in my arms and it took …
