Medical Gaslighting: How To Deal When Doctor's Won't Listen
Maybe It's Stress, Maybe It's Medical Gaslighting
In the summer of 2017, when Allison Martinez, 28, was in college, she developed chronic and intense stomach pains. Naturally, she made an appointment with a doctor to try to figure out what was going on. Instead, she had her first experience with medical gaslighting. "When I was experiencing chronic stomach pain I was told by every doctor that it was stress," Martinez tells POPSUGAR. "One doctor tried to convince me that because I was in college and was working that I had to be stressed out. I had lost over 10 pounds and couldn't finish a meal without experiencing pain." Martinez knew her symptoms were being caused by something more serious, and she continued to try to find someone who could help her. But it wasn't until October of 2018 that she finally visited a doctor who recommended exploratory surgery. It revealed the true cause of her symptoms — not stress, but an enlarged, abnormal appendix and pelvic congestion syndrome.
Martinez had her appendix removed, and soon after was also diagnosed with Fibromyalgia. Post-surgery Martinez says she "was able to eat again and my stomach pain was resolved." But that period of not knowing was horrible. "It was a scary feeling to know something is clearly wrong and no doctor is willing to help," she says. And unfortunately, her experience is not unheard of, or even all that uncommon.
One out of every seven doctor-patient encounters results in diagnostic error — which includes missed, wrong, or delayed diagnoses, according to a study in The Medical Journal of Australia. At least a portion of that diagnostic error can be attributed to what's sometimes known as medical gaslighting, says Liz Kwo, MD, Massachusetts-based physician and chief medical officer at Everly Health. You may be familiar with romantic gaslighting, which refers to a form of psychological abuse, wherein someone manipulates their partner into questioning their own reality. Medical gaslighting, on the other hand, occurs when medical professionals disregards their patients' feelings or reported symptoms, attributing their experiences to psychological causes (like "stress") or denying their symptoms entirely, leading to harmful delays in diagnoses. And it's all too common: Research shows that one in five women report that a healthcare provider has ignored or dismissed their symptoms.
What is medical gaslighting and how does it happen?
"[Medical gaslighting] describes the experience of having one's symptoms dismissed by a medical provider," says Dr. Kwo. At its foundation is, essentially, a lack of trust. "When [healthcare providers] don't necessarily trust either the reporter's symptoms or what they're really thinking," that's when medical gaslighting occurs, she explains.
This can stem from a lack of experience or clinical knowledge on the provider's part. A patient may report a host of symptoms that "don't correlate directly back to a potential reason for why this could happen and sometimes that gets dismissed as overly exaggerating," says Dr. Kwo. Those symptoms may then be chalked up to stress, hormones, or other psychosocial or related factors. But prejudice and implicit bias can also play a role in a physician's tendency toward medical gaslighting.
Who is most affected by medical gaslighting?
Medical mistrust, and in turn gaslighting, tends to disproportionately affect women, Dr. Kwo notes. "Female patients are frequently told they're under stress, or have anxiety, or suffer from depression, or the complaints are a result of hormonal cycles – whether menstrual cramps or perimenopause," according to an Association for Healthcare Journalists post. "Other women find their symptoms attributed to their weight, or to just plain malingering."
Research also demonstrates that women experience more medically unexplained symptoms (MUS) than men, a term that's used to describe symptoms for which there's no clear cause. Studies have shown that up to two-thirds of women in primary care experience MUS.
"When doctors choose to not investigate a symptom that is significantly affecting a person's life it not only threatens physical health but also their mental health."
At least part of this discrepancy can be explained by the fact that, in general, women have been studied less than men. In "1977, the U.S. Food and Drug Administration began recommending that scientists exclude women of childbearing years from early clinical drug trials, fearing that if enrolled women became pregnant, the research could potentially harm their fetuses," per The New York Times. "Researchers were also concerned that hormonal fluctuations could muddle study results. In 1993 a law was passed reinstating the inclusion of women and minorities in medical research funded by the National Institutes of Health.
But the knowledge gap created during the period before this law was passed still exists. A 2014 report out of Brigham and Women's Hospital stated that the science that informs medicine today "routinely fails to consider the crucial impact of sex and gender." The failure "happens in the earliest stages of research, when females are excluded from animal and human studies or the sex of the animals isn't stated in the published results. Once clinical trials begin, researchers frequently do not enroll adequate numbers of women or, when they do, fail to analyse or report data separately by sex. This hampers our ability to identify important differences that could benefit the health of all." This has impacted the way doctors understand certain conditions and how they affect women.
Take heart disease, for example. It's the leading cause of death for women in America. But "only one-third of cardiovascular clinical trial subjects are female and fewer than one-third (31 percent) of cardiovascular clinical trials that include women report results by sex," according to the Brigham and Women's Hospital report. This leaves doctors more familiar with male symptoms, and unprepared to deal with the varying symptoms women tend to experience, which can lead to exactly the kind of diagnostic error mentioned earlier.
For women of colour, particularly Black women, medical mistrust and gaslighting tends to be even more troubling — and dire. Half of the medical trainees surveyed believed myths about Black patients, like they experience less pain than white patients, in a study published in the Proceedings of the National Academies of Science. When giving birth, Black people experience higher maternal mortality than their white peers, due at least in part to a disbelief in their symptoms. The mistrust of Black patients has even been reflected in the way doctors take notes during visits with Black patients versus white patients. A Journal of General Internal Medicine study found that doctors's notes about Black patients were more likely to contain judgement words like "insists" or "claims".
Dangers of medical gaslighting
"Doctors take a Hippocratic oath to 'do no harm' but gaslighting patients inflicts harm," Martinez says. It can result in delays in diagnosis and unnecessary pain; it can also cause psychological harm, when a patient begins to doubt their ability to trust themselves. "When doctors choose to not investigate a symptom that is significantly affecting a person's life, it not only threatens physical health but also their mental health," Martinez confirms. "Being gaslit made me question my own pain and experience." In some cases, like in instances of Black maternal mortality, medical gaslighting can even be fatal.
How to tell if your doctor is gaslighting you
Sometimes, medical gaslighting is obvious: you're trying to tell your doctor how you feel or what you think may be wrong, and they are pushing back, writing off your concerns, repeatedly telling you it's normal, or offering up answers that you know don't make sense. But other times, it can be harder to know for sure what's going on. After all, the relationship between medical professional and patient is not an equal one. We're taught to put our faith in our doctors' opinions and advice; to trust them, the supposed experts, over ourselves.
So, Dr. Kwo suggests being mindful of how a trip to the doctor's office makes you feel. Do you leave feeling like you got your questions answered or do you leave feeling unheard, or worse off than when you got there? Dr. Kwo says to be particularly aware of feelings of confusion, withdrawal (as in not wanting to talk or be there any more), anxiety, and defenciveness during and after your visit. Not every doctor's visit will be perfect, but feeling unheard or dismissed are red flags.
How to combat medical gaslighting
Dr. Kwo has suggestions for both patients and providers to improve doctor-patient interactions.
For patients:
- Don't be afraid to get a second opinion, if possible. If you've been seeing the same provider again and again, and they're giving you the same answers and suggestions that you've already tried and haven't helped, it might be worth moving on. If you're able to see a new doctor, try it, and see if you have a different experience.
- Keep a symptom journal or diary. Write down the age of onset for your symptoms, how often they occur, and when they tend to worsen, so that you have a thorough track record to bring to your next visit.
- Consider at-home self-testing. While this isn't a perfect solution, some tests can be useful in figuring out where your health currently stands, and/or in starting a new dialogue with another physician.
- Ultimately, trust your gut. If you feel like you're not getting the care you deserve, seek out information from alternative sources, advocate for yourself, and if possible, look for a new healthcare provider who is a better fit. These aren't always easy or accessible solutions, but when your health is at stake, it's worth pushing back to get the answers you deserve.
For providers:
- Everyone presents information differently, especially when it comes to reporting symptoms. Patients of colour have a history of medical mistrust. And a patient's delivery of their symptoms can vary depending on culture and ethnicity, age, personality, etc. The onus is on physicians to learn about and study these differences so that they are able to help patients from all walks of life and meet them wherever they are on their trust scale.
- Consider the zebras. Physicians tend to think in terms of horses, or common conditions and correlations. "But sometimes there are zebras and you diagnose something that's just not common, but it happens," says Dr. Kwo.
- Follow through with your patients. Track their symptoms over time to develop pattern recognition, so that you can be aware of any major changes.
