Is Your Doctor Gaslighting You?
Take these steps if you feel like medical professionals are minimizing your health concerns
Many medical professionals dislike the phrase "medical gaslighting" because it sounds as if they're trying to drive their patients crazy on purpose. For an explanation of the term, think of the 1944 movie "Gaslight," when Charles Boyer's character deliberately does things to manipulate Paula, his beleaguered wife played by Ingrid Bergman, into believing that she is going mad.
As registered nurse, clinical social worker and psychotherapist (and also being both a realist and a "cock-eyed optimist" at the same time), I believe the majority of health care providers do have their patients' best interests at heart. That being said, I also know that medical gaslighting — in which a clinician brushes off your complaints, invalidates your feelings or perceptions or flat-out suggests that you're being melodramatic — is real and, unfortunately, happens more than it should.
Ilana Jacqueline, a rare disease patient, advocate and author of the recently published "Medical Gaslighting: How to Get the Care You Deserve in a System That Makes You Fight for Your Life," lived 19 years with an invisible, undiagnosed immune deficiency disease before being diagnosed in 2009. In her book, she shares her own medical journey along with information culled from interviews with physicians, specialists in medical malpractice law and the National Institutes of Health associate director for research on women's health about the myriad ways some doctors discredit patient experiences and perceptions.
She gives a particularly excruciating example of the time a surgeon, attempting to remove a port-a-cath embedded in her chest and entangled with scar tissue, ignored her screams and pleas for her to stop or anaesthetize her. The surgeon continued yanking and tugging at the port, insisted that what Jacqueline was feeling was "pressure, not pain" because she had been given pain medication.
"Losing my sense of security and trust in those who cared for me was life altering."
After that experience was followed by other similarly infuriating and at times inhumane medical trauma, Jacqueline says that she experienced fear and hesitation that has impacted every future decision she made about her health. "Losing my sense of security and trust in those who cared for me was life altering," she writes.
Variety of Examples
When used in terms of health care, medical gaslighting encompasses a wide range of behaviors including disregarding your thoughts or feelings, constantly interrupting you, trivializing your concerns or implying that you are over-exaggerating symptoms or malingering. Gaslighting occurs more frequently for women, people of color, older adults, those who are LGBTQ, those living with chronic pain, neurodivergent people, those with psychiatric disabilities and individuals with "invisible conditions" such as migraines or irritable bowel syndrome.
Certain disorders, such as lupus, fibromyalgia and chronic myalgic encephalomyelitis (also known as chronic fatigue syndrome) have poorly defined symptoms that can migrate from one body part to another, making them difficult to diagnose.
Medical gaslighting can also involve ruling out diagnoses because you don't fit the typical demographic
Medical gaslighting can also involve ruling out diagnoses because you don't fit the typical demographic, as in, "you're too young to be having a heart attack," or deciding that you're OK and refusing to do further investigation because your X-ray or blood tests are normal.
Prejudicial feelings or implicit bias based on race, gender, ethnicity or socioeconomic status may lead practitioners to assume an individual is drug-seeking, histrionic or just looking for sympathy or attention. "Unfortunately, health care disparities impact many aspects of health care delivery. Inequities result from many factors including social determinants of health and structural and systemic racism," says Donna-Ann Thomas, M.D., division chief of pain management and regional anesthesiology at Yale University School of Medicine and an assistant professor of anesthesiology.
Biases in Health Care
A 2021 article in Harvard Medicine revealed that Black and brown patients are significantly undertreated for pain, receiving lower doses of analgesics than whites, less potent medicines or — horrifically — nothing at all. The article goes on to state that race-based medicine, which at times has been used in good faith and at other times less favorably, is now, regardless of intent, considered by many patients, clinicians and researchers to be a form of bias.
If you're a member of the 50-and-older club, your symptoms may be dismissed with condescending comments such as, "Well, things hurt as you get older, you know," or "You're not as young as you used to be." (Thanks, Doc, I thought I was 21 and wondered about those premature wrinkles and gray hairs.)
"Your pain is valid even if it can't be seen."
Female patients may be told that they are just stressed out, juggling too many balls in the air or experiencing "normal" hormonally-related symptoms of perimenopause or post-menopause. A 2021 article in the Journal of Women's Health pointed out that gender bias, with the frequent belittling of women's physical complaints and underrepresentation of women in health studies, has long been an issue in health care. The article noted that the NIH allocates a disproportionate share of its resources to diseases that affect primarily men.
Efrat LaMandre, a Staten Island, New York-based nurse practitioner and author of "It's Not in Your Head," says medical gaslighting occurs when a clinician hears a patient's story and expresses any reaction other than "I believe you — let's explore your concerns."
"Your pain is valid even if it can't be seen," LaMandre says, "or if something is going on in your body that won't show up on imaging or tests." LaMandre adds, "What's important is that this person is someone who listens, who believes you, and if they don't have the answers, is willing to collaborate with other specialists that can help you get the answers you need."
"There is nothing wrong with Googling your symptoms."
Unlike many other health care providers, LaMandre says "There is nothing wrong with Googling your symptoms. Coming into the exam room as an informed, empowered patient, you're no longer a passive recipient, you're an active participant (in your own care.)"
Dealing With Medical Gaslighting
Beside being frustrating and hurtful, having a health care practitioner doubt you or minimize your symptoms makes it less likely that you will get a timely and accurate diagnosis. This can lead to long periods of untreated pain, an improper or ineffective treatment plan, exacerbation of a current disorder and a worse than expected health outcome. To prevent this:
- “Try to identify where your pain is, and explain its characteristics as specifically as possible, using adjectives such as sharp, throbbing or burning," Thomas says. "If you say, ‘I hurt all over,’ it makes it more difficult for us to get a true sense of what might be going on in your body.”
- Being a good historian is important. Know what medications you take as well as what treatments have been tried with what kind of results.
- Make sure your questions and concerns are addressed. This includes medical aspects of your condition as well as worries you might have about quality-of-life issues such as sleep, fatigue and nutrition.
- If you believe that you are not being taken seriously, calmly try to address it with your health care provider. If the person is not responsive, it may be necessary to find a new and more empathic clinician.
- LaMandre suggests keeping a journal. It will help you to recognize your patterns and to communicate what’s going on in a way that hopefully will aid in diagnosis and appropriate treatment.
- Remember that every individual has patient rights, which include the right to be treated with respect, to ask questions about health status and to learn about the risks and benefits of proposed interventions. Understanding these rights and advocating for yourself is the best way to ensure that you get the care and treatment you deserve.
