Repairing Broken Trust in the Doctor-Patient Relationship

Trust is an essential part of the relationship between patient and doctor. Without it, the foundations of medical care crumble.

When I first became ill, I trusted every doctor I met. I thought they always had my well-being in mind. I believed in our advanced medicine and machines. I never even thought to doubt any lab work.

But my good faith soon vanished.

After months of mysterious symptoms I was diagnosed with Lyme disease and co-infections. I was lucky compared to most; my multiple diagnoses came fast. But my health was deteriorating at an unusually alarming rate. I developed burning pain (neuropathy), vomited multiple times a day, and had migraines two or three times a week among many other symptoms.

One of the worst symptoms I developed was muscle tremors. The first time it happened I couldn’t walk. Both legs jerked violently. I went to the ER and the nurse at the front desk told me I was probably fatigued and not to worry. I sat in the empty ER shaking and shaking and shaking. They told me they were waiting to see if they stopped.

The tremors lasted six hours. They became extremely painful and tiring. One doctor finally looked at me and was generally nice, but just shrugged. He didn’t believe me when I said it hurt.

I still struggle with tremors and fight to have them believed. I’ve fallen off of my chair at work. Fallen to the floor and been stranded for an hour. My partner even held my neck stable for five hours in the middle of the night as terrible neck tremors took over my body. I was lucky he was there.

I saw multiple specialists. None were helpful.

One neurologist asked me what I thought the cause was. I told him I been diagnosed with bartonella and I heard it could cause muscle tremors. He chuckled at me and said he couldn’t help. When a different doctor asked my medical history, I said I have Lyme disease. He suddenly crossed his arms and pushed his rolling chair backwards so hard he hit the wall. He said, “Ah, you’re one of those people.” Yet another doctor saw my arm tremoring and said, “If you think about it really hard, you can stop it from moving.”

In each instance, a vital piece was missing. Trust. Trust allows for mutual respect and open communication. Without it, relationships wither. Had any of the above doctors trusted in what I felt, read, saw and said I was diagnosed with, we could have moved onward with medical care. Instead, without trust, there was only a dead end.

Why do so many doctors stop trusting their patients? And why have patients stopped trusting doctors?

With easy access to information online, there are more people who self-diagnose. I know doctors see their fair share share of it and it must be frustrating. But it’s not always a bad thing. Doctors are human and don’t know every rare disease out there. Lyme disease is somewhat rare where I live, so I don’t expect a doctor to know many details about it. Often I’m the expert on Lyme disease in the room.

There may also be fear of being wrong on the part of the doctor. What if he/she diagnoses someone with something so polarizing and rare as Lyme disease? What if it ends up being something else? Isn’t there probably a more common and likely answer?

At present, there also is over-reliance on labs and tests as concrete evidence for diagnoses versus symptoms a patient reports. There is a tendency to ignore some symptoms a patient mentions, especially if there are too many. I imagine it’s overwhelming to think about over 20 symptoms and see the connection but it’s important to consider the whole picture.

I’m not saying labs and tests are all bad. They can be very helpful. But a doctor shouldn’t dismiss or ignore what a patient reports because it doesn’t fit what the lab test shows. This doesn’t help the doctor or the patient.

I also don’t want to say all doctors are bad. I have met some wonderful doctors whom I trust. I wouldn’t be able to write at all without their help. (Darn muscle tremors!)

We need to revisit the foundational aspects of any relationship: respect, trust and communication. A patient should feel safe and heard when talking to their doctor. A doctor should be an active listener and good communicator. Both should feel respected by the other. That is the only way to have trust.