Christina, who lives in Portland, Me., said she felt ignored by doctors for years. When she was 50 pounds heavier, her caregivers sometimes blamed her height when discussing her health concerns.
One case happened weeks after she fell off her bike. “My elbow still hurt,” said Christina, 39, who asked that her last name be withheld when discussing her medical history. “I went to my regular GP and she just waved her hand off, ‘Well, you’re overweight and it’s putting stress on your joints.'”
Eventually, Christina visited an emergency center, where providers performed an X-ray and found that she had fractured 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 New York Times article on the subject received more than 2,800 comments: some reported misdiagnosis that almost cost them their lives, or delays in treatment that led to unnecessary suffering. Patients with long Covid wrote about how they felt ignored by the doctors they turned to for help.
Recently, the issue has attracted attention from both the medical community and the general public because it disproportionately affects women, people of color, geriatric patients, and LGBTQ individuals. Studies have found, for example, that women are more likely than men to be misdiagnosed with certain conditions – such as heart disease and autoimmune diseases – and they often wait longer to be diagnosed. And a group of researchers discovered that doctors were more likely to use negative descriptors, such as “noncompliant” or “excited,” in black patients’ medical records than in those of white patients — a practice that could lead to health care inequalities.
“Gaslighting is real; It happens all the time. Patients – and women in particular – 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 looking out for the following warning signs.
Your provider keeps interrupting you, doesn’t let you elaborate, and doesn’t appear to be an engaged listener.
Your caregiver minimizes or downplays your symptoms, for example by asking if you are in pain.
Your doctor refuses to discuss your symptoms.
Your provider will not order essential imaging or laboratory work to rule out or confirm a diagnosis.
You feel that your provider is rude, condescending, or disparaging.
Your symptoms are attributed to a mental illness, but you are not given a mental health referral or screened for such an 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 University of Southern California’s Keck School of Medicine. “We’re working together to find out what’s happening and what we can do about it. It really should be shared decision-making.”
What can you do to promote yourself?
Keep detailed notes and records. dr Mitchell recommended keeping a journal, in which you log as much detail as you can about your symptoms. Her suggested prompts include, “What are your symptoms? When do you feel these symptoms? Do you notice any triggers? When you’re in pain, how does it feel? Does it wax and wane or is it constant? What days do you notice this pain?”
In addition to your notes, keep a record of all your lab results, imaging, medications, and family history.
It’s akin to visiting a tax accountant, said Dr. Mieres: “You certainly won’t come without receipts.”
Ask questions. Then ask more. Prepare a list of questions 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 to ask your doctor, “If you were me, what questions would you ask now?”
Bring a companion with you. Sometimes it can be helpful to have a trusted friend or relative accompany you, especially when discussing a treatment plan or a difficult medical issue.
When people are sick, scared, or anxious, it can ease the “brain freeze,” said Dr. mieres “We stop thinking, we don’t hear enough, 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 pair of ears? Or do you need them there primarily for emotional support? Are there times when you would prefer your friend or relative to leave the room so you can discuss private matters?
Concentrate on your most pressing problem. Providers are often short on time, and the average primary care consultation takes just 18 minutes, according to a study published in 2021. dr Mieres recommended taking 10 minutes before your appointment to jot down bullet points that briefly outline the purpose of your visit so that you can communicate effectively with your doctor.
Determine the next steps. Ideally, you should leave your appointment feeling relaxed. Tell your provider that you want to understand three things: your best guess at 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?
change providers. A study using data from 2006 and 2007 estimates that about 12 million adults are misdiagnosed in the United States each year, and about half of those mistakes could be harmful. If you’re concerned that your symptoms aren’t being treated, you have the right to seek a second, third, or even fourth opinion.
But that’s easier said than done in many cases. Finding another specialist to cover your insurance and have immediate appointments available is not always quick or easy. If possible, try to get a referral from your current doctor. For example, you can say, “Thank you for your time, but I’d really like to get another 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. Alternatively, you can ask friends and family or call your insurance company to locate someone on the network.
Reframe the conversation. If you decide to stay with your current provider but that person doesn’t seem to be listening, Dr. Ask the patient to redirect the conversation by saying something like, “Let’s hit the pause button here because we have a disconnect. You don’t hear what I’m saying. Let me start again from the beginning.”
Or alternatively: “I have had these symptoms for three months. Can you help me to find the error? What can we do to find out together?”
Look for support groups. There are support groups for a variety of conditions that can provide useful resources and information.
Tami Burdick, who was diagnosed with granulomatous mastitis, a rare, chronic, inflammatory breast disease, in 2017, found help at an online support group for women with the same condition.
First, she was referred to an infectious disease specialist, who rejected a breast biopsy that found bacteria.
“I developed horrible, painful abscesses that opened up and drained on their own,” said Ms Burdick, 44.
In her search for answers, she conducted extensive research on the disease. And from the support group, she learned 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 that has been linked to granulomatous mastitis and recurrent breast abscesses. It took seven months to investigate, but she finally had an answer. To help other women, she published a book about her experiences in collaboration with her oncologist.
“Had the infectious disease specialist followed through,” she continued, “I might have been able to start antibiotics right away and never have had surgery.”
Appeal to a higher authority. If you are being treated in a hospital, you can contact patient advocacy staff who may be able to help you. You can also discuss the issue with your doctor’s caregiver.
Finally, if you are unhappy with the care you are receiving, Dr. Mitchell, you may consider reporting your experience to the Federation of State Medical Boards.
“Any instances of abuse, tampering, gaslighting, delays in diagnosis — these are reportable events that providers need to be aware of,” said Dr. mitchell “Doctors must be held accountable”