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HomeTalking PointsMedical gaslighting – it’s real, and affects mainly women, say physicians

Medical gaslighting – it’s real, and affects mainly women, say physicians

Research published in the Medical Journal of Australia 2020 says that between 8% and 15% of all hospital admissions in the US are the result of diagnostic error, which includes missed, incorrect or delayed diagnosis.

A thorough history, including information from relatives and other medical professionals, and a thorough physical examination, are fundamental steps that, when combined, will produce the correct diagnosis in more than 80% of cases.

In contrast, failure to follow these steps results in 40% of missed diagnoses, reports IoL.

The experience of having your concerns dismissed by a medical provider, often referred to as medical gaslighting, can happen to anyone. A recent New York Times article on the topic received more than 2 800 comments.

Some recounted misdiagnoses that nearly cost them their lives or that delayed treatment, leading to unnecessary suffering. Patients with long COVID wrote about how they felt ignored by the doctors they turned to for help.

Lately, the problem has been drawing attention, in both the medical community and the general public, for disproportionately affecting women, people of colour, geriatric patients and LGBTQ people. For example, studies have found women are more likely than men to be misdiagnosed with certain conditions – like heart disease and autoimmune disorders – and they often wait longer for a diagnosis.

And one group of researchers discovered that doctors were more likely to use negative descriptors like “non-compliant” or “agitated” in black patients’ health records than in those of white patients, a practice that could lead to healthcare disparities, reports The New York Times.

It happens all over the world, including in South Africa.

Founder and chief physician of Dr Concierge SA, a Sandton-based concierge medical practice, Dr Lelo Latakgomo, holds a medical degree from UCT and is an experienced family physician passionate about all things associated with primary health, preventative care, and optimising health for the entire family, from children to grandparents.

On the subject of gaslighting, she said: “Gaslighting occurs when someone has the ability to make you doubt your own feelings and thoughts. Additionally, it may make you feel disregarded or demeaned. It can affect anyone, but it has been shown that it occurs frequently among women and people of colour.”

She said doctors “are taught to take a patient’s medical history, listen carefully to what the patient is complaining about, and then examine the patient”. Based on what they hear and see, the doctor will then give a diagnosis.

One of two things might have caused a misdiagnosis: either the patient didn't provide enough details for the doctor to make an accurate diagnosis, or the doctor didn’t obtain a complete medical history.

“As a patient, your may report a doctor to the medical board if you believe you are not receiving proper care on the grounds that the doctor violated the medical profession’s ethical code.”

Concurring that gaslighting “is real, it happens all the time”, is Dr Jennifer Mieres, a professor of cardiology at the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell and co-author of the book Heart Smarter for Women, who like Latakgomo, said women, especially, “need to be aware of it”.

What are the signs?

Gaslighting can be subtle and isn’t always easy to spot. When seeking medical care, experts recommend watching for the following red flags.

Your provider continually interrupts you, doesn’t allow you to elaborate and doesn’t appear to be an engaged listener.

Your provider minimises or downplays your symptoms, for example, questioning whether you have pain.

Your provider refuses to discuss your symptoms.

Your provider will not order key imaging or lab work to rule out or confirm a diagnosis.

You feel that your provider is being rude, condescending or belittling.

Your symptoms are blamed on mental illness, but you are not provided with a mental health referral or screened for such illness.

“I always tell my patients they are the expert of their body,” Dr Nicole Mitchell, the director of diversity, equity and inclusion for the obstetrics and gynaecology department at the Keck School of Medicine of the University of Southern California told The New York Times. “We work together to figure out what’s happening and what we can do about it. It really should be a shared decision making.”

What can you do to advocate for yourself?

Keep detailed notes and records. Mitchell recommended keeping a journal where you log as many details as possible about your symptoms. Her suggested prompts include: “What are your symptoms? When do you feel those symptoms? Do you notice any triggers? If you have pain, what does it feel like? Does it wax and wane, or is it constant? What days do you notice this pain?”

In addition to your notes, keep records of all of your lab results, imaging, medications and family medical history.

It is analogous to seeing your accountant at tax time, Mieres said: “You certainly do not show up without receipts.”

Ask questions. Prepare a list of questions that you would like to ask before your appointment, and be prepared to ask other questions as new information is presented. If you aren’t sure where to start, Mitchell recommended asking your doctor this: “If you were me, what questions would you ask right now?”

Bring a support person. Sometimes it can help to have a trusted friend or relative accompany you, particularly when discussing a treatment plan or difficult medical issue.

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

Speak to your support person to clarify their role and discuss your expectations, she added. Do you want them to take notes and be a second set of ears? Or do you primarily need them there for emotional support? Are there times where you might prefer that your friend or relative leave the room so that you can discuss private matters?

Focus on your most pressing issue. Providers are often short on time, and the average primary care exam is only 18 minutes long, according to a study published in 2021. Mieres recommended taking 10 minutes before your appointment to jot down bullet points that outline the reason for your visit so you can communicate with your doctor efficiently.

Pin down next steps. Ideally, you should leave your appointment feeling reassured. Tell your provider you would like to understand three things: the best guess as to what is happening; plans for diagnosing or ruling out different possibilities; and treatment options, depending on what is found.

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

Switch providers. A study using data from 2006 and 2007 estimated that about 12m adults were misdiagnosed in the US annually, and about half of those errors could be harmful. If you are concerned your symptoms are not being addressed, you are entitled to seek a second opinion, a third or even a fourth.

But in many cases that may be easier said than done. It’s not always quick or simple to find another specialist who has immediate appointments available. If possible, try to get a referral from your current doctor. For example, you can say: “Thank you for your time, but I would really like to seek another opinion on this. Could you refer me to another specialist in your area?”

If you don’t feel comfortable asking your doctor for a referral, speak to a patient liaison or nurse manager. Alternatively, ask friends and family.

Reframe the conversation. If you decide to stick with your current provider, but that person doesn’t appear to be listening, Mieres recommended redirecting the conversation by saying something like: “Let’s hit the pause button here, because we have a disconnect. You’re not hearing what I’m saying. Let me start again.”

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

Latakgomo said during a doctor-patient consultation” neither you nor we are always aware of the information you are communicating to us”.

“We are aware of the consequences of choosing option five in the list of complaints you’ve given us, instead of opting to treat the first initial symptoms you complained about.

“But it’s also your responsibility as a patient to ask your doctor why they are focusing on five and two, and are the rest being addressed? You need to understand. However, if your doctor is being dismissive then they are in the wrong through no fault of yours.

“It’s the doctor’s responsibility to explain why they are focusing on particular complaints and not everything all at once.”

Finding support groups can be extremely helpful: there are groups for a multitude of conditions that may provide useful resources and information.

Tami Burdick, who was diagnosed in 2017 with granulomatous mastitis, a rare, chronic, inflammatory breast disease, found help from an online support group for women with the same condition.

Initially, she was referred to an infectious disease specialist who dismissed a breast biopsy found to contain bacteria.

“I developed horrible, painful abscesses that would open and drain on their own,”
Burdick, 44, said.

Searching for answers she conducted extensive research on the disease. And from the support group she learned of a gene sequencing test that could identify potential pathogens. She asked her surgical oncologist to order the test and discovered she had been infected with a specific microorganism associated with granulomatous mastitis and recurrent breast abscesses. It took seven months of investigating, but she finally had an answer. To help other women, she self-published a book about her experience in collaboration with her oncologist.

“If the infectious disease specialist had looked further into it,” she continued, “perhaps I could have started antibiotics right away, then and there, and never have required surgery.”

“Any instances of abuse, manipulation, gaslighting, delaying diagnoses – those are reportable events that providers need to know about,” she said. “Doctors need to be held accountable.”

 

IOL article – What is medical gaslighting and why does it affect mostly women? (Open access)

 

The New York Times article – Feeling Dismissed? How to Spot ‘Medical Gaslighting’ and What to Do About It (Restricted access)

 

See more from MedicalBrief archives:

 

CHIPS: Widespread misdiagnosis and mismanagement of cluster headaches

 

Physician bias behind women getting worse heart attack treatment — 43-hospital study

 

Neurologist’s failure to inform patient of medication side-effects

 

Misdiagnosis of multiple sclerosis found to be common

 

Misdiagnosis victim waits

 

 

 

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