Medical gaslighting delays diagnosis and impairs treatment; see how to deal

Christina, who lives in Portland, Maine, said she felt ignored by doctors for years. When she was 50 pounds overweight, her healthcare providers would sometimes blame her body size when she talked about her problems.

One case occurred weeks after she fell off her bike. “My elbow was still hurting,” said Christina, 39, who asked that her last name not be used when talking about her medical history. “I went to my primary care doctor and she made a gesture with her hand as if to say, ‘Well, you’re overweight and it’s straining your joints.'”

Later, Christina visited an urgent care center, where professionals took an X-ray and discovered that she had cracked a bone in her arm.

The experience of having your worries dismissed by a doctor, often called medical gaslighting, a kind of mental manipulation, can happen to anyone.

A recent New York Times article on the topic received more than 2,800 comments: some people reported misdiagnosis that nearly cost them their lives or delayed treatment, leading to unnecessary suffering. Some patients with long-term Covid wrote how they felt ignored by the doctors they asked for help.

Lately, the issue has been drawing attention – both in the medical community and the general public – for disproportionately affecting women, people of color, geriatric patients and LGBTQIA+ people.

For example, studies have found that women are more likely than men to be misdiagnosed with certain conditions — such as heart disease and autoimmune disorders — and often wait longer for a diagnosis.

A group of researchers has found that physicians tend to use more negative descriptive forms such as “disobedient” or “agitated” in the charts of black patients than in those of white patients — a practice that can lead to disparities in health care.

“Gaslighting is real, it happens all the time. Patients — especially women — need to be aware of this,” said Jennifer H. Mieres, professor of cardiology at the Donald and Barbara Zucker School of Medicine in Hofstra/Northwell and co-author of the book “Heart Smarter for Women”.

Here are some tips on how to defend yourself in a medical setting.

What are the signs of gaslighting?

Gaslighting can be subtle and not always easy to spot. When seeking medical attention, experts recommend watching for the following warning signs:

• Your provider continually interrupts you, doesn’t let you explain properly, and doesn’t seem like an engaged listener.
• Your doctor downplays or dismisses your symptoms, for example by asking if you feel pain.
• Your provider refuses to discuss your symptoms.
• Your provider does not order imaging or lab tests to rule out or confirm a diagnosis.
• You feel that your provider is being rude, condescending, or derogatory.
• Your symptoms are attributed to mental illness, but you do not receive a mental health referral or are screened for that illness.

“I always tell my patients that they are experts in their bodies,” said Nicole Mitchell, director of diversity, equity and inclusion in the department of obstetrics and gynecology at the Keck School of Medicine at the University of Southern California. “We work together to find out what’s going on and what we can do about it. It really has to be a decision-making together.”

What can you do to defend yourself?

Keep detailed notes and records

Mitchell recommends keeping a journal where you record as much detail as possible about your symptoms. Suggestions include: “What are the symptoms? When do you experience these symptoms? Do you notice any triggers? If you feel pain, what does it feel like? Does it wax and wane, or is it constant? What days do you feel pain?”

In addition to your notes, keep records of all lab results, imaging tests, medications, and family medical history. It’s like going to the accountant to do your income tax, Mieres said: “You certainly don’t get there without receipts.”

Ask. then ask more

Prepare a list of questions you would like to ask before the appointment and be prepared to ask others as new information is presented. If you’re not sure where to start, Mitchell recommends asking your doctor, “If you were me, what questions would you ask now?”

Bring a support person

Sometimes it can help to bring a trusted friend or family member with you, especially to discuss a treatment plan or difficult medical issue.

When people are sick, scared or anxious, it can facilitate “brain freeze,” Mieres said. “We stop thinking, we don’t listen properly, we don’t process information.”

Speak with your companion to clarify your role and discuss your expectations, she added. Do you want him to take notes and be a second pair of ears? Or do you need it primarily for emotional support? Are there times when you prefer your friend or family member to leave the room so you can talk about private matters?

Focus on your most precise problem

Providers are often short on time, and the average primary care exam lasts just 18 minutes, according to a study published in 2021. Mieres recommends using ten minutes before your appointment to jot down points that concisely describe the reason for your visit, so you can communicate with the doctor efficiently.

Define the next steps

Ideally, you should leave your appointment feeling at ease. Tell the doctor you’d like to understand three things: the best guess about what’s going on; plans to diagnose or rule out different possibilities; and treatment options, depending on what is found.

If you are still being ignored, what are your options?

change provider

A study using data from 2006 and 2007 calculated that approximately 12 million adults are misdiagnosed in the US each year, and about half of those errors can be harmful. If you are concerned that your symptoms are not being addressed, you have the right to seek a second, third or even fourth opinion.

But in many cases this can be easier said than done. It’s not always quick or simple to find another specialist who meets your insurance and has immediate consultations available. If possible, try to get a referral from your current doctor’s network.

For example, you might say, “Thanks for your time, but I’d really like to get another opinion on this. Could you refer me to another expert in your field?”

If you don’t feel comfortable asking your doctor for a referral, you can also speak to patient care or the nursing manager. Alternatively, you can ask friends and family or call your insurance company to find someone on the net.

Reframe the conversation

If you decide to stay with your current provider, but that person doesn’t seem to be listening, Mieres recommends that patients try to redirect the conversation by saying something like, “Let’s hit the pause button here, because we have a disconnect. what I’m saying. Let me start over.”

Or alternatively, “I’ve had these symptoms for three months. Can you help me find what’s wrong? What can we do to figure this out together?”

Look for support groups

There are support groups for a variety of conditions that can provide helpful resources and information.
Tami Burdick, who was diagnosed in 2017 with granulomatous mastitis, a rare, chronic inflammatory disease of the breast, found help in an online support group for women with the same condition.
Initially, she was referred to an infectious disease specialist, who discarded a breast biopsy that contained bacteria.

“I developed horrible, painful abscesses that opened and drained on their own,” said Burdick, 44.

In search of answers, she conducted extensive research on the disease. And from the support group she learned of a genetic sequencing test that could identify potential pathogens. Burdick asked her surgical oncologist to order the test and found that she had been infected with a microorganism associated with granulomatous mastitis and recurrent breast abscesses.

It took seven months of investigation, but finally got an answer. To help other women, she published a book about her experience in collaboration with the oncologist.

“If the infectious disease specialist had investigated further,” she continued, “maybe I could have started antibiotics right away, right then and there, and not have needed surgery.”

Turn to a higher authority

If you are being treated in a hospital setting, you can contact the patient advocacy team who will be able to assist you. You can also resolve the issue with your doctor’s supervisor.

Finally, if you’re dissatisfied with the care you’re receiving, Mitchell said, you might consider reporting your experience to the regional board of medicine.

“Any cases of abuse, manipulation, gaslighting, delay in diagnosis are reportable events that providers need to be aware of,” said Mitchell. “Doctors need to be held accountable.”

Translated by Luiz Roberto M. Gonçalves