Portland, m. Christina, who lives in the U.S., said she felt neglected by doctors for years. When she was 50 pounds heavier, her providers sometimes blamed her body shape when she discussed her health concerns.
An incident happened weeks after that when 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 my regular primary care doctor and he hand-waved it like ‘Okay, you’re overweight and it’s putting stress on your joints.
Eventually, Christina visited an urgent care center where providers did an X-ray and found she had cut a bone in her arm.
The experience of a medical provider dismissing their concerns, often called medical gaslighting, can happen to anyone. A recent New York Times article on the subject received more than 2,800 comments: some misdiagnosed that nearly cost their lives or delayed treatment, causing unnecessary suffering. For a long time, Kovid patients wrote about how they were ignoring the way doctors ignored them for help.
Recently, the problem has been gaining attention – both in the medical community and the general public – disproportionately affecting women, people of color, geriatric patients and LGBTQ 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 they often wait longer for a diagnosis. And one group of researchers found that doctors were more likely than white patients to use negative descriptors such as “non-compliance” or “agitated” in the health records of black patients — a practice that has led to health care disparities. can give.
“Gaslighting is real; it happens all the time. Patients — and special,” said Dr. Jennifer H. Myres, professor of cardiology at the Donald and Barbara Zucker School of Medicine in Hofstra/Northwell and co-author of the book “Heart Smarter for Patients.” Obviously women should know about it. Woman.”
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 it is not always easy to detect. When seeking medical care, experts recommend watching for the following red flags.
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Your provider interrupts you constantly, doesn’t allow you to elaborate and doesn’t seem to be a busy listener.
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Your provider treats or alleviates your symptoms, for example by questioning whether you have pain.
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Your provider refuses to discuss your symptoms.
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Your provider will not order major imaging or laboratory work to rule out or confirm a diagnosis.
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You feel that your provider is being rude, condescending or frivolous.
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Your symptoms are attributed to mental illness, but you have not been provided with a mental health referral or screened for such illness.
Nicole Mitchell, director of the Division of Obstetrics and Gynecology at the University of Southern California’s Keck School of Medicine, said: “I always tell my patients that they are the experts on their bodies.” “We work together to figure out what’s going on and what we can do about it. It really has to be a shared decision-making.”
What can you do to advocate for yourself?
Keep detailed notes and records. Dr. Mitchell recommends keeping a journal where you record as many details as possible about your symptoms. Her suggested signs include: “What are your symptoms? When do you feel those symptoms? Do you notice any triggers? If you have pain, how does it feel? Does it wax and wane, or is it constant? On what day do you notice this pain?”
In addition to your notes, keep a record of all your lab results, imaging, medications, and family medical history.
It’s akin to seeing your accountant at tax time, Dr. Meires said: “You certainly don’t show up without receipts.”
Ask questions. Then ask something else. Prepare a list of questions you want to ask before your appointment, and be prepared to ask other questions as new information is presented. If you’re not sure where to start, Dr. Mitchell recommends asking your doctor: “If you were me, what question 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 difficult medical issue.
When people are sick, scared or anxious, it can facilitate “brain freeze,” Dr. “We stop thinking, we don’t listen well enough, we don’t process information.”
Talk to your support person to clarify your role and discuss your expectations, he said. Do you want them to take notes and have another set of ears? Or do you need them there primarily for emotional support? Are there times when you prefer that your friend or relative leave the room so that you can discuss personal matters?
Focus on your most important 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. Dr. Myres recommends 10 minutes before your appointment to jot down bullet points that briefly outline the reason for your visit. So that you can communicate efficiently with your doctor.
Pin the next steps. Ideally, you should leave your appointment feeling confident. Tell your provider that you would like to understand three things: to make a best guess as to what is going on; a plan to diagnose or rule out various possibilities; and treatment options, based on what’s found.
If you are still being ignored, what are your options?
Switch providers. A study using data from 2006 and 2007 estimated that approximately 12 million adults were misdiagnosed each year in the United States and that about half of those errors could be harmful. If you are concerned that your symptoms are not being taken care of, you are entitled to a second opinion, a third or even a fourth one.
But in many cases it is easier said than done. It’s not always quick or easy to find another specialist who takes your insurance and there are immediate appointments available. If possible, try to get an in-network referral from your current doctor. For example, you might say: “Thanks for your time, but I’d really like to have another opinion on this. Can you refer me to another expert in your field?”
If you don’t feel comfortable asking your doctor for a referral, you can also talk to the patient liaison or nurse manager. Alternatively, you can ask friends and family, or call your insurance company to find someone in-network.
Re-frame the conversation. If you decide to stay with your current provider, but that person isn’t listening, Dr. Myres recommends that patients try to redirect the conversation with something like: “Let’s hit the stop button here, because We have a disconnect. You’re not listening to me. Let me start again.”
Or, alternatively: “I’ve been having these symptoms for three months. Can you help me find out what’s wrong? What can we do together to find out?”
Look for support groups. There are support groups for many conditions that can provide useful resources and information.
Tammy Burdick, who was diagnosed with granulomatous mastitis, a rare, chronic, inflammatory breast disease, in 2017, got help from an online support group for women with a similar condition.
Initially, she was referred to an infectious disease specialist, who ruled out a breast biopsy containing bacteria.
“I developed terrible, painful abscesses that would open and drain on their own,” said Ms. Burdick, 44.
In search of answers, he did extensive research on this disease. And from the support group she learned about a gene sequencing test that can identify potential pathogens. Ms Burdick asked her surgical oncologist to order tests and found she had been infected with a specific microorganism associated with granulomatous mastitis and recurrent breast abscesses. The investigation took seven months, but he finally had the 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 this more,” she continued, “I might have started antibiotics right away and from there, and never needed surgery.”
Appeal to higher authority. If you are being treated in a hospital setting, you can contact patient advocacy staff who may be able to assist. You can also solve the problem with your doctor’s supervisor.
Finally, if you’re unsatisfied with the care you’re getting, Dr. Mitchell said, you might consider reporting your experience to the Federation of State Medical Boards.
“Any examples of abuse, manipulation, gaslighting, delay in diagnosis – they are reportable events that providers need to know about,” Dr. Mitchell said. “Doctors must be held accountable.”
(This story has not been edited by seemayo staff and is published from a rss feed)