The Nocebo Effect—The Power of Belief

There’s a refrain you might have heard or used as a kid in response to insults hurled your way. “Sticks and stones can break my bones, but words can never hurt me.” Did you really believe that words could never hurt you?

As a fourth year medical student I had a deeply disturbing experience that permanently changed the way I speak to my patients.

During my two-month rotation in the pulmonary department, I learned about all sorts of conditions related to the respiratory tract. My job was to take a complete history and perform an abbreviated physical exam on each patient, after the nurse had checked the vital signs. When the attending physician came into the room, I presented the history and physical findings and then stood back to observe the doctor/patient interaction.

One of the patients I saw—I will call him Jim—had a lingering cough. I remember Jim as tall, slim, and looking like a basically healthy fifty-year-old man with a hacking cough.

During the history taking, I discovered Jim never smoked and had no prior history of respiratory problems. He had recently started a new job making bread at a popular bakery in town. In hindsight, I can see the pulmonologist overlooked an important clue to the cause of the cough. No one asked him if the onset of the cough coincided with the time he started working at the bakery where flour dust was undoubtedly inhaled by all the bakers. Flour dust is a lung irritant.

Jim said the only reason he came for an appointment was because his wife was concerned that his cough had lasted for six weeks. There was no fever, no chills or any other symptoms. When I listened to his lungs, they sounded perfectly clear. The attending physician listened to my presentation, then asked the patient a few questions and checked his lungs. He said Jim’s lungs were clear, but he was going to order a chest x-ray anyway since the cough had lasted so long. “We need to rule out anything serious like cancer.”

The patient was taken to the ground floor to get the x-ray series and then escorted back to the exam room to wait for the doctor. I chatted with the patient, reassuring him that the x-ray results would probably be totally normal. I sensed his agitation after the physician said he wanted to “rule out cancer.”

The attending physician walked into the room with a grave look on his face. He was clearly uncomfortable and made little eye contact with the patient. He cleared his throat a couple of times, then said, “I have some bad news. Your x-ray shows a large mass in your upper right lung. We’ll have to schedule you for surgery to have the mass biopsied and sent to pathology.” In those days, CT and MRI scans were not commonly used.

“Doctor, do you think I have cancer?”

The doctor said he couldn’t say for certain, but that it looked like a strong possibility. He asked the patient to make a follow up appointment in one week for further testing.

As the physician said those words, I watched the color leave Jim’s face. In almost a whisper, he asked, “How long do I have to live, Doctor?” The pulmonologist said he didn’t know if the mass was infectious or cancerous. He explained that he wouldn’t know until a biopsy was done and the pathology report was back.

Jim pressed the pulmonologist. “If the pathology report shows I have cancer, how long do I have to live?”

The pulmonologist said it could be three to six months, given the size of the mass, but he couldn’t say for sure.

The patient looked like he had been hit in the stomach with a baseball bat. The life force seemed to have drained out of him. He got off the examining table and walked like a ghost out the door.

Several months after I left the pulmonary rotation, I ran into a classmate who told me what happened to Jim. He never came back to the hospital for follow-up and died after about three months.

His wife was upset and wanted answers. She insisted an autopsy be performed on her husband because, as she said, he had been perfectly healthy with just a simple cough.

The autopsy was done and no tumor was found in the lungs. The radiologists and pulmonologists did an investigation. The x-rays were re-examined at which time it was discovered that the dead man’s chest x-ray was mislabeled and was actually someone else’s x-ray. Jim’s x-rays were perfectly normal.

The news left me stunned. The patient essentially died from the impact of the words that were spoken to him. At that moment, I made a silent pact with myself to be mindful of the words I spoke. Primum non nocere.

We all know about the placebo effect—the healing power of our thoughts, perceptions and emotions when given a supposedly inert substance. But not much is spoken about the nocebo effect.

The English translation of the Latin word, nocebo, is “I shall harm”—the opposite of placebo. Just as our expectations can have the potential to heal, they can also have the potential to harm us.

Perhaps the children’s refrain should be: Sticks and stones can break my bones, but words can really harm me— if I believe them.

When I lived with the Navajo People as an elementary school teacher in the early 1970s, witchcraft was still practiced. My students reassured me that white people were safe from the effects of Navajo witchcraft. When I asked why white people weren’t affected, one of my students, a ten-year-old boy, said, “because white people don’t believe in witchcraft.”

Such wisdom from a young child.

Graduation from medical school

Freshly minted Doctor Erica, with a degree and a commitment to remember the power of words to harm and to heal.


Comments

The Nocebo Effect—The Power of Belief — 26 Comments

  1. I used to get lung infections on a perpetual basis when I was younger and at 14 I was tested for cystic fibrosis – a fatal condition. My test was positive and this became the first of 5 times (so far) that I have been told I would die. Even in the face of a catastrophic chemical exposure, Non-Hodgkin’s Lymphoma, and devastating chemotherapy – I did not listen to them. In fact I have a saying just for such an occasion “Just watch me prove you wrong”! In spite of all these gloom and doom physicians I am still here!
    Erica, in the midst of all the negative feedback from traditional medicine you helped me bend against the wind. In case I haven’t said it lately – Thank you for being You!

  2. Good story, I was recently reading a review for a new book that goes into the huge trend of people thinking that they are allergic to wheat and gluten, but when they are tested most do not actually have a gluten or wheat allergy. It talks about the Nocebo effect, this was the first time I had heard this term, very interesting. If you google “gluten nocebo effect” there are a number of interesting articles about the latest research. I’ve enjoyed your musing’s so keep them coming

    • What the public doesn’t understand is that most gluten problems are not allergies, they can be described as gluten intolerance. I wrote all about the distinction in my post about Wheat, written several months ago. I hope the readers understood the difference. Just because one tests negative for food allergies does NOT mean they don’t have a problem with gluten. Gluten sensitivity and gluten allergies are two different conditions.

  3. great story Erica! and i am amazed that i just emailed you saying i’d love to talk about nocebo! what a coincidence 😀 i think this will be a very relevant future topic in many areas of life. keep it up.

  4. Dear Erica,
    Thank you so much for your insightful and inspiring story. I have been a “student” of Bruce Lipton…. your tender experiences in your story gave the concepts a face and a a life-giving reality for me… so appreciate your work and life perspective! Warm wishes,
    Alison

  5. Such a powerful story on so many levels. I was bullied as a child and those words haunted me and echoed in my head for a long time. I was also told by I doctor that I would be dead within a few months. I had to struggle not to give into the belief that his words were gospel.I chose to fight and prove him wrong, but it wasn’t easy. Please continue to share your thoughts and stories with us. You are amazing!!!!!!!

    • You are the one who is amazing, Willa. You stood up to those words and predictions and proved them wrong. You believed in yourself.

  6. My Mother had a similar experience several years ago. She was not feeling well and had a cough. Her internist did a chest xray and it showed a mass in her lower lung. I believe he then sent her for a CT scan which also showed a consolidated mass in her lung. At that time they told her she might have lung cancer and sent her to a surgeon. She was terrified. She was convinced she might have cancer and needed surgery to remove part of her lung. As a Registered Nurse, and her daughter, I accompanied her to the surgeon’s office. I sat there with my mother as the surgeon, still in his green scrub suit fresh out of surgery, looked at the chest Xray and CT scan results. With all the delays in scheduling appointments it had been 3 months since the initial CT scan had been done. I asked the surgeon many questions. He was convinced that the mass was cancer and he had to operate and a date was scheduled for the surgery. I knew that something was really amiss with this situation. My mom had recovered from her cough and was feeling fine and was sitting in the surgeon’s office looking perfectly healthy. I asked the surgeon what else it could be besides cancer. He said it could be a “consolidated pneumonia”. I pointed out that my mom was feeling better and that the CT scan was 3 months old. I asked him to repeat the CT scan to see what it showed at that time. He was worried that I was asking him such pointed questions and agreed to repeat a CT scan and said he would take her case to “Grand Rounds”. I told my mom not to agree to the surgery and she did not.As the day for her surgery came and went, we were notified that her repeat CT scan was completely normal and that whatever had been in my Mom’s lungs was completely gone. I know my Mom went through a terrible 3 months thinking that she had Cancer. The power of the words of the doctor and surgeon caused huge distress for my Mom and the entire family. My Mom is now 84 years old and still going!

  7. Great story Erica! I needed to remember that today, because challenges with my car have left me feeling “persecuted” and that often leads to an exacerbation of symptoms for me. I am working to think instead of options from a “adult perspective”. I have been asking myself, “How would a normal, healthy adult handle this situation?” It produces a different set of thoughts and body responses than feeling victimized by my circumstances!

  8. Your writing is incredible! Not just the story itself, but the emotion and good quality of writing you put into it.
    Are you familiar with Bruce Lipton’s work, “The Biology of Belief,” and “Spontaneous Evolution?”

    • Thank you for your comments, Don. Yes, I have heard about Bruce Lipton’s work. But, when I was a medical student, I hadn’t read anything about what I experienced.

  9. Thanks, Erica… you have confirmed something I’ve believed in, for a long time: the power of words, thoughts, and intent.

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