Patients with Unexplained Symptoms and Medical Gaslighting

Yesterday, I read an interesting article here on PT by Chris Gilbert, M.D., Ph.D. She discussed medical gaslighting, and how to deal with it. I have to admit, I'd never heard of medical gaslighting. I checked in with several of my medical colleagues who agreed they were not familiar with the term.

Most of us are aware of the term, gaslighting. It originated as the title of the 1944 American film Gaslight. The film portrays a seemingly genteel husband who uses lies and manipulation to isolate his heiress wife so that she eventually questions her perception of reality.

Gaslighting in medicine refers to a situation where a patient’s concerns or physical complaints are dismissed by a healthcare provider. He or she does not take you seriously, or they suggest your symptoms are the result of something vague or innocuous, such as “stress.” Worse, they may send you home without a proper diagnosis or treatment plan. Aside from feeling dismissed or unheard, these situations can lead to serious health consequences.

In my psychiatric practice, I see an array of patients who are referred to me for help in diagnosing medically unexplained symptoms. These are real symptoms, but physical findings and laboratory tests do not reveal an obvious biological cause. These symptoms are common, and account for at least 40 percent of primary care visits. Most research studies report an increased female to male ratio in patients who are diagnosed with medically unexplained symptoms. Interestingly, there is the same gender prevalence for patients who report being gaslit by their health providers. Could there be an overlap between these experiences?

According to an article in The Australian Family Physician, “Patients with medically unexplained symptoms often complain that they are not taken seriously.” One patient compared her medical record to that of being a criminal. She noted, “I compare it with being … wrongly accused of a crime…I’m made to feel bad when I’ve actually done nothing wrong.” Some patients quietly disengage from health services altogether when they cannot face engaging in a process that invalidates their pain.

Another example is the case of a 56-year-old woman who consulted a doctor because she was having difficulty coordinating her hands while trying to dust the coffee table. According to her daughter, “the first doctor my mother saw said, 'You’ve got to expect this at your age,' and when she went to a second doctor, he advised her to go home and relax with a glass of wine.” Two years later, her mother was diagnosed with Parkinson’s disease, which eventually claimed her life. She was a victim of medical gaslighting.

In 1999, best-selling author Amy Tan attended a wedding in upstate New York. The following day, she noticed a rash on her shin. She thought briefly about Lyme disease, but believed her rash was not the classic “bullseye” lesion described in the literature. In addition to the rash, Tan developed symptoms similar to the flu. However, she was not alarmed, because the symptoms disappeared within a day.

In the years that followed, Tan experienced headaches, insomnia, muscle aches, fatigue, and jitteriness. At her annual physical, she told her primary care doctor about tingling and numbness in her feet. Her doctor explained she had neuropathy. Tan reported the history of a rash and asked whether all of her symptoms might be related. “No,” her doctor replied, and dismissed her concerns.

In search of an answer, Tan visited multiple specialists. At one point, her blood sugar plunged so low, her doctor recommended hospitalization. During the course of the hospitalization, an MRI of her brain showed 14 abnormal lesions. Her doctors told her, “it’s normal for someone your age.” She was 49 years old at the time.

Unfortunately, it took years for Tan to eventually find a doctor who believed her and made the correct diagnosis of Lyme disease. Fortunately for those of us who love to read her work, she is still writing. But, because of the delayed diagnosis, she has residual deficits that will never go away

Patients suffering from medically unexplained symptoms are sometimes referred to as “somatasizers,” and their concerns are dismissed or minimized. Since the onset of the Covid pandemic, 19 percent of those infected continue to have symptoms long after the acute illness has resolved. Patients with Long Covid comprise a group who have an array of complaints, such as brain fog, fatigue, memory loss, and poor concentration. Similar to patients who have medically unexplained symptoms, these individuals have criticized medical professionals for not taking their complaints seriously, mostly due to lack of knowledge on the part of their health care providers.

Gaslighting Essential Reads

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A study published in Qualitative Research in Health investigated the experience of over 300 Long Covid patients who created an online social network to find information and help with an array of puzzling symptoms. The investigators analyzed the participants’ responses to a survey that was designed to learn about their experience with medical gaslighting. 34 percent of respondents said they were treated as unreliable reporters of their symptoms and felt as though their illness experience was dismissed. One of the respondents replied, “In the beginning, it was terrifying. No one believed or understood that Covid lasted longer than two weeks and it wasn’t a life-or-death thing. At the most terrifying point of my life, I had to fight not just to live but for people to believe that my illness existed, let alone to get help…because Covid is only respiratory and lasts max two weeks. There are people like me who survived and live (exist because this is not living) in a haze but have never been back to themselves."

Do Physicians Intentionally Gaslight Patients?

In general, no. Most people who go to medical school do so with good intentions. Gaslighting, as it was first used in literature, described intentional efforts on the part of an individual to make another doubt their own perception of reality. Although surely there are exceptions in medical practice, as there are in other professions, most physicians are not intentionally trying to cause emotional harm by denying patient complaints. However, we are human—we make mistakes, and we suffer from unconscious bias. For example, heart disease, the number one killer of women is often misdiagnosed because heart disease has been regarded as a “male” condition, and women with heart disease often present to a doctor’s office with symptoms different from males. The information we learn in medical school is usually based on research conducted on white males. The data does not translate easily to other populations.

Most individuals with medically unexplained symptoms are initially seen in a primary care doctor’s office. According to a study published in the January issue of Medical Care, primary care physicians spend an average of eighteen minutes per patient visit. In an attempt to identify and zero in on a diagnosis in this short time span, the subtleties of a person’s history may be overlooked or dismissed, leading to a feeling of dissatisfaction for the patient and frustration on the part of the physician.

A patient’s history may lead to a premature diagnosis that is incorrect. As a third-year resident, I was called to see a man in the emergency room who had been diagnosed with schizophrenia 30 years earlier. Since that time, he had no symptoms that were consistent with this diagnosis. However, in the days leading up to his arrival in the ER, he had an abrupt change in his behavior, according to his wife.

Schizophrenia does not occur acutely—it is a slow and progressive disorder and usually arises in the late teens or early twenties. This gentleman was 56 years old.

I was concerned he had a medical condition that had abruptly caused this change in his behavior, but based on the history in his chart, the ER physicians felt it was a psychiatric diagnosis, and they would not admit him to a medicine floor. I admitted him to psychiatry, and the next day I called for a neurology consult. The patient was diagnosed with a rare form of cancer that had invaded his central nervous system and was the cause of his change in behavior.

What You Can Do if You Feel Like Your Medical Provider is Gaslighting

Remember, physicians and other healthcare providers are not omnipotent. Yes, we train for years to be able to practice our profession, but it is impossible to keep up with all the newly emerging research on every diagnosis. Doctors make mistakes. You are your own best advocate, and you know your body better than any medical professional. You are paying our fees, and you have a right to feel respected and have your concerns heard. These are strategies I recommend to my own patients when they consult a new physician:

• Have questions ready to ask your new provider. Write them down so you can refer to them and not forget your concerns when your average office visit is 18 minutes.
• Keep detailed notes about your symptoms so you can easily relate them to your provider.
• If possible, bring a trusted friend/relative with you so you have a second pair of eyes and ears.
• Ask the provider what diagnoses they are considering. If they do not know, ask if you should see a specialist.
• Ask about laboratory work or other evaluations that would be helpful in arriving at a diagnosis.
• Do your homework. Check out the reviews of the provider you were going to see. If they get an “F” for bedside manner, think twice. You can read legitimate reviews on WebMD, Healthgrades, or Vitals.com. You wouldn’t hire a contractor without reading reviews, right?
• If you feel unheard or disrespected, do not feel like you must continue with this provider. You can always get a second opinion—your health may depend on it.