The doctor was confident.
“I can assure you, there is nothing wrong with your kidney.”
Tamara Keith had been living with pain around her left kidney. Not a little twinge now and then. Over the next six years, she would be admitted to the hospital more than 30 times with severe pain, vomiting, dehydration and other symptoms.
She was treated repeatedly for kidney infections.
Most of the cultures came back negative.
The pain kept coming back anyway.
And eventually something else began to happen.
When the tests couldn’t explain Tamara’s symptoms, people began questioning Tamara.
Her pain was discredited. Her motives were questioned. Her honesty was doubted. She picked up labels along the way.
Functional.
Attention seeking.
And eventually one that caught my attention:
The annoying “expert patient.”
She kept looking anyway.
The thing nobody was finding
Eventually Tamara became convinced she knew what was wrong.
Nutcracker syndrome.
I’d never heard of it either.
The short version is that a vein carrying blood away from the left kidney can become compressed between other blood vessels. It is rare, and even the diagnosis and best treatment aren’t always straightforward.
In other words, this isn’t a story about some obvious condition a bunch of stupid doctors should have spotted immediately.
It was difficult.
That’s important to what happened next.
During another episode of pain, Tamara had an ultrasound.
This time a radiologist saw something.
He didn’t know what it was.
And that’s where the story changed.
After years of being told there was nothing wrong with her kidney, Tamara finally encountered someone willing to say, essentially:
I don’t know what’s wrong. But your left kidney isn’t normal.
Tamara later called that the transformative moment in her diagnostic journey.
Think about that.
The person who finally moved things forward wasn’t somebody who walked into the room knowing the answer.
It was somebody willing to admit that he didn’t.
Further imaging showed compression of Tamara’s left renal vein. Eventually a venogram measured an abnormal pressure gradient and confirmed the diagnosis.
Six years after she first presented with the problem, Tamara finally had a name for it.
There’s something I haven’t told you about Tamara
Tamara wasn’t simply spending those years reading medical information because she was desperate to understand what was happening to her.
She was a medical student.
She was trying to become a doctor while spending much of her twenties as a patient.
And she had arrived at her suspected diagnosis herself.
Tamara later wrote that she’d figured out it was nutcracker syndrome before many of the clinicians treating her had even heard of it.
Which apparently didn’t make her particularly popular.
As she put it:
“Consultants do not take kindly to being taught by medical students.”
Okay. That made me laugh.
But imagine being Tamara.
You hurt.
You know something is wrong.
You’ve spent years learning everything you can because your life has basically forced you to.
You believe you’ve found the answer.
And your growing knowledge becomes one more reason some people find you difficult.
Her story didn’t suddenly become easy
This is where I’d love to give you the movie ending.
Diagnosis. Treatment. Everybody goes home happy.
That’s not what happened.
Tamara’s symptoms were debilitating enough that she eventually chose major surgery. Her left kidney was removed and transplanted to the other side of her body.
The symptoms that had plagued her disappeared.
Then came a serious complication involving the artery supplying the transplanted kidney. More procedures followed. Ultimately, the kidney had to be removed.
Seven years after that final surgery, when Tamara wrote about her experience, she said she’d had no further medical problems.
And by then there was another change.
The annoying “expert patient” had become Dr. Tamara Keith, a general practice partner and trainer teaching other doctors.
That’s one hell of a rest of the story.
Maybe the “expert patient” isn’t such a strange idea
Tamara’s story sent me looking.
I wondered how often people living with complicated or rare conditions end up becoming remarkably knowledgeable about the thing affecting them.
Apparently, enough that researchers actually study it.
One systematic review of 21 qualitative studies involving people with rare disorders found the “expert patient” phenomenon in 12 of them. Patients searched for information, learned medical terminology, followed research and treatment developments, and sometimes found themselves knowing more about their particular rare condition than healthcare professionals they encountered.
That doesn’t mean they knew more medicine.
They knew more about this.
The one thing that had taken over a chunk of their lives.
Another study interviewing people with rare diseases and healthcare professionals found something similar. Patients can develop extensive knowledge from living with and researching their disease, while clinicians may have little experience with a condition they rarely encounter.
When you think about it, that shouldn’t be terribly surprising.
A doctor has to know about an enormous range of conditions.
A patient with a rare disease may wake up every morning thinking about one.
This is where I think we get ourselves into trouble
I don’t expect doctors to know everything.
Nobody can.
I have enormous respect for somebody who has spent years learning medicine and then spends a career trying to help people with problems ranging from ordinary to bizarre.
But here’s the double standard that bothers me.
We can understand why a doctor might know relatively little about an obscure condition.
Yet when the person actually living with that condition spends years trying to understand it, sometimes we decide they’ve been Googling too much.
Or now, I suppose, asking GPT too many damn questions.
Patients can absolutely be wrong.
Google can be wrong. GPT can be wrong. Some guy screaming into a microphone on YouTube can be spectacularly wrong.
Health anxiety is real. Bad information is everywhere. Reading research papers doesn’t magically turn somebody into a physician.
But none of that means the person sitting on the examination table brings nothing valuable to the conversation.
They’ve been living in the body you’re discussing.
They know what hurts.
They know when it started.
They know what makes it better.
They know what makes it worse.
They know what has changed.
And if they’ve lived with something for five or ten years, they may have spent an extraordinary amount of time learning about the one condition their doctor might encounter once in a career.
That knowledge doesn’t replace medical expertise.
Why would we want it to?
The two kinds of knowledge can help each other.
My favorite person in Tamara’s story
After everything Tamara went through, my favorite person in the story might still be that radiologist.
He didn’t solve the mystery on the spot.
He didn’t pretend to know something he didn’t know.
He looked.
He listened.
And he was willing to admit uncertainty.
Tamara herself eventually wrote that doctors shouldn’t be afraid to say they don’t know and ask others for help. She believed humility and honesty could sometimes matter more than already having the answer.
That’s not an argument against doctors.
That’s the kind of doctor I want.
And I think there’s a responsibility on the other side of the examination table too.
Learn.
Ask questions.
Pay attention to your body.
Bring good information with you.
Be curious.
And be willing to discover that you’re wrong.
You don’t have to prove your doctor wrong to participate in your own healthcare.
Your doctor knows things you don’t know.
You know things your doctor doesn’t know.
Maybe the best conversations happen when neither person feels threatened by that.
Tamara’s story began with somebody telling her:
“I can assure you, there is nothing wrong with your kidney.”
Years later, she remembered most fondly the doctor who was willing to tell her something very different:
I don’t know what’s wrong. But something isn’t right.
Sometimes that’s where the answer begins.