Karen Lutfey Spencer, PhD, professor of health and behavioral sciences who studies medical decision-making at University of Colorado, Denver. CLAS.UCDenver.edu
Shortly after tennis champion Serena Williams gave birth, she started having trouble breathing. She worried it might be a pulmonary embolism, a blood clot in her lungs—a problem she had suffered in the past. She asked for a CT scan and a blood thinner. A nurse told Williams that the pain medication she was taking was making her “talk crazy.” But a subsequent CT scan did reveal a clot in her lungs.
If you’ve ever had a health-care provider dismiss your symptoms…say you were “just stressed”…or blame your concerns on psychological factors…you’re not alone. Patients around the country are complaining about a phenomenon known as medical gaslighting, a term derived from the 1944 Ingrid Bergman film Gaslight, in which a husband manipulates his wife into questioning her perceptions of reality and her sanity.
Most doctors aren’t intentionally trying to gaslight their patients, nor do they even realize they’re doing it, says behavioral health-care expert Karen Lutfey Spencer, PhD. But there can be grave consequences when real symptoms are brushed aside—it may delay a correct diagnosis, force you to endure unnecessary or ineffective treatments, and cause you to second-guess your symptoms and conditions in the future.
Bottom Line Personal asked Dr. Spencer to explain why medical gaslighting is so prevalent now, as well as suggest strategies for spotting it and preventing it from compromising your medical care…
Health-care practices today are heavily influenced by what insurance companies are willing to cover and pay for. That has forced doctors to make medical care as efficient as possible, and it shows. A study of 21 million patient visits to primary-care medical practices around the country found that the average visit lasted just 18 minutes…and 22% of primary-care physicians spend only nine to 12 minutes with patients. When doctors are rushed or distracted, they tend to fall back on preconceived notions about patients, which can lead to oversights and diagnosis errors. Examples…
Age bias. An elderly man consults his doctor because he is having a hard time coordinating his hands when he plays golf. The doctor assumes the cause is arthritis and recommends a nonsteroidal anti-inflammatory medication without exploring whether it’s a more serious neurological condition.
Gender bias. Women’s ailments often are not taken as seriously as men’s. Recent findings: Women waited in hospital ERs an average of 12 minutes longer to be evaluated and treated than men. Heart problems often are misdiagnosed in women because they may not experience the typical symptoms such as chest pressure or pain that men do. Researchers have attributed these disparities to bias among health-care workers.
Gaslighting can be hard to spot. Just because a doctor offers a different interpretation of your symptoms or declines to recommend a test that you requested doesn’t mean that he/she is disregarding your concerns. But there are telltale signs that should put you on alert. Take notice if your health-care provider…
Immediately blames your symptoms on general lifestyle causes, such as your weight, stress or work overload, rather than asking further questions or exploring other medical possibilities.
Is condescending and unhelpful if you challenge the diagnosis.
Uses phrases that minimize your concern, such as, “It’s all in your head”…“You’ve got to expect this as you get older”…“Your pain is manageable.”
Interrupts you repeatedly. One study found that clinicians interrupted patients just 11 seconds, on average, into their conversation. This makes it difficult to present a full picture of your concerns.
Many patients are intimidated by physicians. After all, they’re the experts, right? And you don’t want to appear dramatic or foolish or paranoid in front of your health-care providers.
But remember—you are the foremost expert on your body, and that means your input is not only valuable but essential. You need to collaborate with your health-care provider and make shared decisions on a realistic and sustainable treatment plan. Steps to take…
Before your doctor visit…
Keep a symptom diary. Record details about your condition including dates and times when symptoms occur…when you first noticed symptoms…what triggers them…whether they come and go or are constant…what makes them better or worse. It’s particularly important to track your pain. And because pain is subjective, it is easy for doctors to downplay it. Record the intensity of your pain on a scale of 1 to 10…how long it lasts…its quality (a sharp stabbing sensation, a dull ache)…and how it specifically is affecting your life (“My lower back aches when I drive for more than 30 minutes”). Helpful resource: Use Symple (SympleApp.com), a symptom-tracker and health-diary app. Cost: Free to monitor up to five symptoms…additional features for $9.99 per month.
Schedule your appointment for first thing in the morning. Studies show that patients get better care early in the day, rather than later, when physicians may suffer mental fatigue that could compromise their decision making.
During your visit…
Tell the doctor’s assistant you would prefer to explain your problems to the doctor while you are still dressed. Only change into that skimpy hospital gown for the physical checkup. Reducing the obvious power differential means your initial complaints and input may be taken more seriously.
Set the agenda. Tell the doctor your main priority for the visit so he spends the majority of time on that problem, not lesser concerns you have. Many patients are reluctant to self-diagnose or worry that their Internet research about their symptoms won’t be seen as legitimate, so they let the doctor decide what to focus on.
Ask permission to record your appointment. Not only does a recording make the doctor more accountable, it’s easier for you to remember what he says.
Bring along a friend or family member, especially someone who has been with you when you’ve had your symptoms. In addition to taking notes and providing emotional support, that person can validate and reiterate your concerns if the doctor is dismissive.
Pin down the next steps before you leave. Ideally, you should leave your appointment with a best guess as to what is causing your symptoms…a plan for diagnosing or ruling out different possibilities…and potential treatment options depending on what is found.
After your visit…
Find an ally/liaison in the doctor’s office. This might be a physician’s assistant or a nurse administrator. They often are easier to reach and less intimidating. If your visit didn’t have the outcome you hoped for, strategize with this liaison about what to do. If you decide to get a second opinion or see a specialist, your liaison can help you get an in-network referral.
If you are in the hospital, contact the patient-advocacy office. Patients who are critically ill are particularly susceptible to medical gaslighting. Studies show that patients who have someone advocating for them at their hospital bedside have much better outcomes. If your hospital doesn’t have an in-house patient advocate, find one near you at the website of the National Association of Healthcare Advocacy (NAHAC.com/directory-of-advocates).