Christina, who lives in Portland, Me., said she felt ignored by doctors for years. When she was 50 pounds heavier, her providers sometimes blamed her height when she talked about her health issues.
One case occurred weeks after she fell off her bike. “My elbow was still hurting,” said Christina, 39, who asked that her last name be withheld when discussing her medical history. “I went to see my regular GP and she kind of said, ‘Well, you’re overweight and that’s putting pressure on your joints.
Eventually, Christina went to an urgent care center where providers performed an X-ray and found she had chipped a bone in her arm.
The experience of having concerns dismissed by a health care provider, often referred to as medical gas lighting, can happen to anyone. A recent New York Times article on the subject received more than 2,800 comments: Some recounted misdiagnoses that nearly cost them their lives or delayed treatment, causing unnecessary suffering. Long-time Covid patients wrote about how they felt ignored by the doctors they turned to for help.
Lately, the issue has gained attention — both in the medical community and the general public — for disproportionately affecting women, people of color, geriatric patients, and LGBTQ people. For example, studies have shown that women are more likely than men to be misdiagnosed with certain conditions — like heart disease and autoimmune diseases — and they often wait longer for a diagnosis. And a group of researchers found doctors were more likely to use negative descriptors like ‘non-compliant’ or ‘agitated’ in the health records of black patients than in those of white patients – a practice that could lead to disparities in health care.
“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 at 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?
Gas lighting can be subtle and not 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 minimizes or downplays your symptoms, such as asking if you have pain.
Your provider refuses to discuss your symptoms.
Your provider will not order imaging or key lab work to rule out or confirm a diagnosis.
You feel that your supplier is rude, condescending, or belittling.
Your symptoms are blamed for mental illness, but you do not get a mental health referral or screening for such illness.
“I always tell my patients that they are the experts on their bodies,” said 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 are working together to understand what is happening and what we can do about it. It really should be shared decision-making.
What can you do to defend yourself?
Keep detailed notes and records. Dr. Mitchell recommended keeping a diary where you record as much detail as possible about your symptoms. His suggested prompts include, “What are your symptoms? When do you experience these symptoms? Do you notice any triggers? If you are in pain, how do you feel? Does it wax and wane, or is it constant? What days do you notice this pain? »
Along with your notes, keep records of 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 don’t show up without receipts.”
To ask questions. Then ask for more. Prepare a list of questions you would like to ask before your appointment and be prepared to ask more questions as new information is presented. If you’re not sure where to start, Dr. Mitchell recommended asking your doctor: “If you were me, what questions would you ask now?” »
Bring a support person. Sometimes it can be helpful to have a trusted friend or relative with you, especially when discussing a treatment plan or a difficult medical issue.
When people are sick, scared or anxious, it can facilitate “brain freezing”, Dr Mieres said. “We stop thinking, we don’t hear properly, we don’t process information.”
Speak with 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 mainly need them there for emotional support? Are there times when you would prefer your friend or relative to 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 takes just 18 minutes, according to a study published in 2021. Dr. Mieres recommended taking 10 minutes before your appointment to write down bullet points that describe how concise the reason for your visit. so that you can communicate effectively with your doctor.
Pin next steps. Ideally, you should leave your date reassured. Tell your supplier that you would like to understand three things: the best estimate of what is happening; plans to diagnose or rule out different possibilities; and treatment options, depending on what is found.
If you are still ignored, what are your options?
Change provider. A study using data from 2006 and 2007 estimated that about 12 million adults are misdiagnosed in the United States each year and that about half of these errors could be harmful. If you are concerned that your symptoms are not being treated, you have the right to seek a second, third or even fourth opinion.
But in many cases, that can be easier said than done. It’s not always quick or easy to find another specialist who takes your insurance and has immediate appointments available. If possible, try to get an in-network referral from your current doctor. For example, you can say, “Thanks for your time, but I’d really like to ask for 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, you can also speak to a Patient Liaison Officer 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 recommended that patients try redirecting the conversation by saying something like, “Let’s hit the pause button here, because we’ve a disconnect. You don’t hear what I’m saying. Let me start over.
Or, alternatively: “I have had these symptoms for three months. Can you help me find what is wrong? What can we do to understand this together? »
Look for support groups. There are support groups for a multitude of conditions that can provide helpful resources and information.
Tami Burdick, who was diagnosed with granulomatous mastitis in 2017, a rare, chronic, inflammatory breast disease, found help from an online support group for women with the same disease.
Initially, she was referred to an infectious disease specialist who rejected a breast biopsy that contained bacteria.
“I developed horrible, painful abscesses that would open up and drain on their own,” said Ms Burdick, 44.
In her search for answers, she has conducted extensive research into the disease. And from the support group, she heard about a genetic sequencing test that could identify potential pathogens. Ms Burdick asked her surgical oncologist to order the test and discovered that she had been infected with a specific micro-organism associated with granulomatous mastitis and recurrent breast abscesses. It took seven months of investigation, but she finally got 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 into it,” she continued, “maybe I could have started antibiotics right away, on the spot, and never needed ‘a surgical intervention.”
Appeal to a higher authority. If you are being treated in a hospital setting, you can contact patient advocacy staff, who may be able to help you. You can also raise the issue with your doctor’s supervisor.
Finally, if you’re unhappy with the care you receive, Dr. Mitchell said, you can consider reporting your experience to the Federation of State Medical Boards.
“All instances of abuse, manipulation, gaslighting, delayed diagnosis — these are reportable events that providers need to be aware of,” Dr. Mitchell said. “Doctors need to be held accountable.”