Patients and caregivers writing on KevinMD about illness and the health care system from the other side of the exam table: navigating care, the doctor-patient relationship, being heard, cost, 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 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 pay and who is left out when physicians leave insurance, see Direct primary care: what physicians say, in their own words. For what patients, families, and physicians have said about dying, hospice, and the decisions families face, see End of life: what physicians say, in their own words. For what physicians and family caregivers have said about growing old, dementia, nursing homes, and caring for aging parents, see Aging and dementia: what physicians say, in their own words.
There is a small, unreasonable part of us that expects our doctors to stay in one place forever.
We know better, of course. We know they grow older, become tired, change jobs, and make plans. Yet the person we bring our uncertainty to is not supposed to become another uncertainty. We may notice the gray hair without quite imagining the day when someone else opens the door.
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 …
Patients may not remember every lab draw, procedure, or study visit. But they will remember how they felt.
One of the greatest privileges of working in clinical research for more than twenty years has been meeting extraordinary people. Clinical research is often associated with science, data, and innovation. Those elements are essential. But there is also a deeply human side to this work. Behind every study, treatment, and medical advancement are …
There are patients you remember for their diagnosis. And then there are patients you remember for who they were.
He was the second kind.
Years ago, during my time in oncology clinical research, I met a patient with multiple myeloma. At the time, I was working as a supervisor in a hematology-oncology clinical research unit at a large academic research institution, overseeing a team of study coordinators and managing assigned clinical trials. …
Medical gaslighting has become a widely discussed concept in health care. The term is often misunderstood as implying intentional dismissal or manipulation by clinicians. In reality, most encounters that patients later describe as gaslighting do not arise from ill intent. They arise from something far more common and far more complex: communication breakdown under system strain.
Understanding medical gaslighting requires examining the clinical encounter from both sides of the stethoscope, not …
Money management and career planning are considered life skills (but the skill that shapes health self-advocacy) deserves the same status. Without it, care suffers. My family member was recovering from surgery, facing medication safety concerns, severe anxiety, and the need for constant care. At the same time, I was managing my own records and preventive health. Like so many women, I had become the family’s chief health executive, carrying responsibilities …
Patient advocate Timothy Thomas discusses his article “The Cap’n Crunch philosophy of medicine.” Timothy shares his personal experiences with gaps in primary care, from learning of his diabetes diagnosis at a Walmart …
So what exactly does collaborative health care mean? When we break this down into categories, there are three main approaches, each with a different benefit but ideally sharing the same end goal: to better improve patient outcomes. First, doctor to alternative practitioner. Secondly, patient to doctor. Lastly, patient to patient.
Years ago, I went through one of the biggest health battles of my life after being diagnosed with granulomatous mastitis (GM). …
In January 2025, the International Council for Harmonisation (ICH) formally adopted the updated E6(R3) Good Clinical Practice (GCP) guidelines. Annex 1 and the revised 12 principles are already in effect. Annex 2 arrives in July. This is not just regulatory housekeeping. It is a clear message to the research world: Meaningful patient involvement is no longer aspirational. It is expected.
For decades, clinical research positioned patients as participants, …
A recent conversation with a relative inspired me to write this post. She is a physical therapist who often rants about how patients with chronic pain or chronic illness don’t work and are just on disability. I know she’s far from the only health care provider with the same belief. She and her coworkers spend time ranting and complaining about their patients who don’t work and use the therapy sessions …
Life keeps buffeting the patient diagnosed with several chronic conditions, like continuous incoming and outgoing mammoth ocean waves flooding over one’s body, raising you high up into the air and then sucking you downward, a struggle to keep your head above the water for survival. There is no rest, true calmness, or time to catch your breath.
My time is dictated by scheduling appointments with my doctor, who then lends me …
The word mundane is defined as an occurrence that is very ordinary and, therefore, not interesting. However, what may be mundane for one may be monumental for another, especially if one’s health is in question.
An ultrasound provides needed information to trained medical personnel for the evaluation of the health status of an individual. In many situations, it is a means to alert the physician to a potential problem situation for …
“To serve the art of medicine as it should be served, one must love his fellow man.”
– William Osler
There is sadness in my heart and my mind. With so many advances in the treatment of illnesses of the mind and body, why have we let our diseased health care system go untreated?
Hospitals in rural areas are being closed down and deemed non-profitable, forcing their patients to seek alternatives; those alternatives …
We traverse parallel paths, you and I. Paths that intersect during times of stress, loss, and illness. Each of us searching for truth, understanding, and resolution.
Our stories need to be heard, but in these trying times, we are but mere specks in the immensity of the corporate orb of health care which rolls and overpowers all in its path. Its hunger seems not to be satiated, its grasp ever stretching.
As Americans, we live in one of the most affluent countries in the world. Outwardly, many of our citizens seem to possess the necessities of life: shelter, food, job employment, and world-class health care. But what happens when we take a closer look? Do we see cracks in the foundation?
If we are honest, the answer is a resounding yes. When one looks at the area of health care, there is …
In Australia recently, a woman successfully sued a hospital for $2.4 million for a series of misdiagnoses that left her quadriplegic. A London woman was recently misdiagnosed four times before doctors discovered she had cervical cancer.
A Canadian woman recently filed a $3.5 million lawsuit claiming she was misdiagnosed and ignored when relaying her symptoms to doctors; she could have died. A 26-year-old woman nearly died after a …
“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 …
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 …
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 …
