Christina, living in Portland, Me. lives, said she felt ignored by doctors for years. When she was 50 pounds heavier, her suppliers sometimes blamed her body size when she discussed her health issues.
One case occurred weeks after she fell off her bicycle. “My elbow still hurt,” said Christina, 39, who asked not to mention her last name when discussing her medical history. “I went to my regular GP and she just waved it off by hand like, ‘Well, you’re overweight and it’s straining your joints.'”
Finally, Christina visited an urgent care center where caregivers took an X-ray and found she had broken a bone in her arm.
The experience of having one’s concerns dismissed by a medical provider, often referred to as medical gaslighting, can happen to anyone. A recent article in the New York Times on the topic received more than 2,800 responses: Some reported misdiagnoses that nearly cost them their lives or delay treatment, leading to unnecessary suffering. Patients with long Covid wrote about how they felt ignored by the doctors they asked for help.
Recently, the problem has attracted attention – both in the medical community and the general public — for disproportionately hitting women, people of color, geriatric patients and LGBTQ people. For example, studies have shown that women more likely than men to be misdiagnosed with certain conditions — such as heart disease and autoimmune diseases – and they often wait longer for a diagnosis. And a group of researchers found that doctors… more likely to use negative descriptors such as “non-compliant” or “agitated” in the medical records of black patients than in those of white patients — a practice that could lead to health inequalities.
“Gaslighting is real; it happens all the time. Patients — and especially women — need to be aware of this,” said Dr. 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 advocate for yourself in a medical setting.
What are the signs of gaslighting?
Gaslighting can be subtle and not always easy to spot. When seeking medical care, experts recommend paying attention to the following red flags.
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Your provider interrupts you all the time, doesn’t let you digress and doesn’t seem to be an engaged listener.
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Your provider will minimize or downplay your symptoms, for example by asking if you are in pain.
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Your provider refuses to discuss your symptoms.
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Your provider will not order major imaging or lab work to rule out or confirm a diagnosis.
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You feel your provider is rude, condescending, or belittling.
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Your symptoms are attributed to a mental illness, but you will not be given a mental health referral or screened for such an illness.
“I always tell my patients that they are the expert of their bodies,” says Dr. Nicole Mitchell, director of diversity, equity, and inclusion for the department of obstetrics and gynecology at the Keck School of Medicine at the University of Southern California. “We look together at what is going on and what we can do about it. It really should be a shared decision-making process.”
What can you do to stand up for yourself?
Keep detailed notes and records. dr. Mitchell recommended keeping a journal where you record as much detail as possible about your symptoms. Her suggested clues include, “What are your symptoms? When do you feel those symptoms? Do you notice any triggers? When you’re in pain, how does it feel? Is it on the wane and wane, or is it constant? At what days do you notice this pain?”
In addition to your notes, keep all your lab results, imaging, medications, and family medical history.
It’s analogous to seeing your accountant at tax time, Dr. Mieres said, “You certainly won’t show up without receipts.”
Asking questions. Then ask some more. Prepare a list of questions you want to ask prior to your appointment, and be prepared to ask other questions when new information is presented. If you’re not sure where to start, Dr. Mitchell to ask your doctor, “If you were me, what questions would you ask right now?”
Bring an attendant. Sometimes it can help to trusted friend or relative accompany youespecially when discussing a treatment plan or a difficult medical problem.
When people are sick, scared or anxious, it can facilitate “brain freeze,” said Dr. Mieres. “We stop thinking, we don’t hear well, we don’t process information.”
Talk 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 pair of ears? Or do you mainly need them there for emotional support? Are there times when you prefer your friend or relative to leave the room so you can discuss private matters?
Focus on your most pressing problem. Providers are often short on time and the average primary care exam takes just 18 minutes, according to an investigation published in 2021. Dr. Mieres recommended taking the time 10 minutes before your appointment to write down bullet points that succinctly outline the reason for your visit so you can communicate efficiently with your doctor.
Record the next steps. Ideally, you will leave your appointment reassured. Tell your provider you want to understand three things: the best estimate of what’s happening; plans to diagnose or rule out various possibilities; and treatment options, depending on what is found.
If you’re still being ignored, what are your options?
Switch providers. An investigation based on data from 2006 and 2007, it was estimated that about 12 million adults in the United States were misdiagnosed each year, and about half of those mistakes could be harmful. If you are concerned that your symptoms are not being addressed, you are entitled to a second opinion, a third, or even a fourth.
But in many cases, that may be easier said than done. It is not always quick or easy to find another specialist who takes out your insurance and has an appointment immediately. If possible, try to get an in-network referral from your current doctor. For example, you could say, “Thanks for your time, but I’d like to have a different opinion on this. Can you refer me to another specialist in your area?”
If you don’t feel comfortable asking your doctor for a referral, you can also talk to a patient contact or nurse manager. Alternatively, you can ask friends and family, or call your insurance company to find someone in the network.
Reframe the conversation. If you decide to stay with your current provider, but that person doesn’t seem to be listening, Dr. Mieres urges patients to divert the conversation by saying something like, “Let’s hit the pause button here, because we’ve been disconnected. You don’t hear what I say. Let me start again.”
Or else: “I’ve had these symptoms for three months. Can you help me find what’s wrong? What can we do to find out together?”
Look at support groups. There are support groups for many conditions that can provide helpful resources and information.
Tami Burdick, who was diagnosed in 2017 granulomatous mastitisa 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 declined a breast biopsy containing bacteria.
“I developed horrible, painful abscesses that opened and drained on their own,” said Ms. Burdick, 44.
In her search for answers, she conducted extensive research into the disease. And the support group told her about a gene sequencing test that could identify potential pathogens. Ms Burdick asked her surgical oncologist to order the test and found she was infected with a specific microorganism associated with granulomatous mastitis and recurrent breast abscesses. It took seven months of research, but she finally had an answer. To help other women, she published a book about her experiences in collaboration with her oncologist.
“If the infectious disease specialist had looked further into it,” she continued, “I might have had antibiotics right away, then and there, and never needed surgery.”
Appeal to a higher authority. If you are being treated in a hospital setting, you can contact the patient advocates who may be able to assist you. You can also discuss the issue with your doctor’s supervisor.
Finally, if you are not satisfied with the care you receive, said Dr. Mitchell, please consider reporting your experience to the Federation of State Medical Councils.
“All cases of abuse, tampering, gaslighting, delays in diagnoses — these are reportable events that providers should be aware of,” said Dr. mitchell. “Doctors must be held accountable.”