Patients and medical gaslighting

n n

Some years ago, while preparing for our university alumni reunion, one of us, Mrs Temitope Omowonuola Ajayi, kept telling those in charge of the food that she had a seafood allergy.

n

Out of curiosity, I asked her a few questions. She told me how she always had a swollen tongue when she was younger and that she only discovered in her 20s that it was caused by seafood.

n

When she grew much older, she had a terrible experience. She had gone to a social event one day where Chinese food was served. She brought her food home. After eating, her ears, throat and nose became blocked, her gums swelled, her tongue enlarged, and she could not breathe properly.

n

It was late in the night, so she could not go to the hospital, but she called her doctor, who advised her to take a particular asthma medication she had already been placed on.

n

Early the next morning, she went to the hospital.

n

In this scenario, my friend was the only person who could solve the mystery behind all the swelling by telling her doctor what had caused it.

n

This week, we are taking a route we have never taken before. In doing so, we are killing two birds with one stone by discussing how patients are often certain about their symptoms, how they accurately identify the causes of their illnesses, and how their explanations are often dismissed by their doctors.

n

The second story is credited to my mother. It happened in the 1970s while she was at the hospital to deliver my immediate younger sister. She said a woman’s blood pressure suddenly skyrocketed immediately after giving birth.

n

While the doctors and nurses panicked, the woman simply told them to give her food. Immediately she ate, her blood pressure returned to normal. That woman knew something about herself that the doctors did not know, and she saved the day.

n

From these stories, we can infer that patients are often the people who can truly explain their symptoms because they know their bodies. Sometimes, their illnesses have causes that may not even have been mentioned in any medical encyclopedia. As such, they hold answers to puzzles that their doctors may not be able to solve.

n

However, there are times when doctors dismiss patients’ understanding of their own illnesses. Let us look at Jessica Baladad’s story.

n

She found a lump in her breast during a routine self-examination in 2018 and sought the professional advice of a medical practitioner. Expecting shared concern and immediate action, Baladad was unprepared for the response. According to her, “My worries were basically dismissed because the doctor felt I was too young for breast cancer.”

n

Several months later, after the lump in her breast had grown, Baladad reached out to another doctor at the same practice, who ordered the appropriate scans and eventually diagnosed Baladad, then 33, with breast cancer.

n

What Baladad experienced is a phenomenon known as medical gaslighting or “symptom invalidation.” The term is commonly defined as having your health concerns dismissed, mocked or contradicted by a medical professional.

n

Doctors or other medical practitioners may wrongly deny a patient’s illness entirely, such as by telling patients they are not really sick, or by attributing a patient’s physical illness or symptoms to psychological factors.

n

n

This discrepancy typically occurs in specific medical scenarios, such as:

n

Medication side effects

n

Patients are often the first to associate a new symptom with a recently prescribed drug, whereas a clinician might initially mistake the adverse reaction for a new, unrelated medical problem.

n

n

Occupational and environmental exposures

n

Patients know their living or working environments intimately and can identify toxic mould, allergens or chemical exposures that may be causing their illness. Doctors, lacking on-site environmental context, may struggle to identify the root cause.

n

n

Rare and genetic diseases

n

Doctors test for common diseases first. If the DNA mutation is completely new to science, standard tests may come back “normal.”

n

The patient lives with the symptoms every day. They might research online and find other people with the exact same mystery illness. This gives them answers long before their doctors can connect the disparate pieces of the puzzle.

n

If doctors cannot identify a problem, they may assume the cause is mental or emotional rather than physical.

n

n

Fragmented medical records

n

This happens when a doctor treats a patient without access to the patient’s previous medical history. The patient knows they had a rare infection or surgery years earlier that is causing their current illness. The current doctor may not know this history.

n

n

Rushed appointments

n

Doctors often work under tight schedules. They may rely on quick, surface-level assessments instead of taking the time to explore a patient’s full medical history.

n

n

Unconscious bias

n

Doctors may hold unconscious prejudices. For example, research shows that women, people of colour and individuals experiencing weight bias are more likely to have their physical symptoms dismissed as anxiety.

n

A review by Rutgers Health researchers reveals the psychological harm and healthcare avoidance that may occur when doctors dismiss, minimise or ignore patients’ symptoms, a phenomenon medical scientists call “symptom invalidation” and patients often refer to as “medical gaslighting.”

n

The paper, published in Psychological Bulletin, examined 151 qualitative studies involving more than 11,000 individuals with conditions including fibromyalgia, long COVID, endometriosis, lupus and other difficult-to-diagnose illnesses.

n

The research identified four broad categories of harm: emotional effects such as self-doubt and shame; healthcare-specific emotional responses, including loss of trust in clinicians; behavioural changes such as avoiding medical care; and diagnostic delays that can worsen medical conditions.

n

Allyson Bontempo, a postdoctoral fellow at Rutgers Robert Wood Johnson Medical School and lead author of the review, said, “We found that patients can question reality. They ask, ‘Am I making this up? Is this all in my head?’ We also found symptom invalidation is associated with depression, suicidality and healthcare-related anxiety that can rise to the level of trauma responses.”

n

Bontempo also said many patients alter their behaviour with clinicians after experiencing invalidation.

n

“Patients reported downplaying their symptoms to doctors so they wouldn’t appear dramatic or like they’re exaggerating. Some patients avoid healthcare entirely.”

n

A study titled Ignored, Dismissed, and Minimised: Understanding the Harmful Consequences of Invalidation in Health Care, A Systematic Meta-Synthesis of Qualitative Research by Bontempo et al. concluded that future research should explore the proposed conceptual model and identify theoretically informed interventions and policies aimed at preventing symptom invalidation to improve psychological, behavioural and health outcomes.

n

Another study titled Preventing and Responding to Medical Gaslighting: Recommendations for Providers and Patients by Devora Shapiro et al. concluded that because medical gaslighting can result in patients retreating from seeking medical assistance, avoiding follow-up appointments and allowing long-standing chronic conditions to worsen due to a lack of medical attention, preventing and addressing medical gaslighting is essential to successful patient care.

n

As a patient, seek a second opinion if your doctor makes you feel unheard or does not allow you to participate in decisions about your care. No one understands your body like you do.

n

Dismissing symptoms without conducting appropriate tests means warning signs of real diseases may be missed, allowing conditions to progress to dangerous stages.

n

n

To this end, doctors are advised to practise active listening, examine their own unconscious biases and validate patients’ pain before drawing conclusions.

n n