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Imagine this: You’ve been experiencing worrisome symptoms and debilitating pain for months, and you finally decide to get to the bottom of it. So you fight to get an appointment to see a provider — you swallow your fear, you wonder what life-changing news you may receive…but you do it anyway because you need answers. Only…you don’t get those answers. You’re simply told that what you are experiencing is all in your head, or it’s normal, or it’s nothing worth looking into any further or testing to identify.
The fact of the matter is, medical gaslighting is real. It’s common, especially towards women. It’s not your fault, you’re not alone, and you can advocate for yourself.
But the question is: How?
At Rescripted, we firmly believe that becoming an expert in your own body is key. Knowing how your body functions, understanding what is and is not normal, and having the language necessary to communicate your concerns and needs — knowledge is what you need in your toolkit if you want to push back against medical gaslighting.
Expert insights: A conversation with Ilana Jacqueline
Becoming an expert in your body is one essential piece, but understanding how and why medical gaslighting happens is key as well. Enter: patient advocate Ilana Jacqueline, who (literally) wrote the book on this issue. Medical Gaslighting: How to Get the Care You Deserve in a System that Makes You Fight for Your Life is a guide written to help women fight back against medical bias and gaslighting. Here, the author opens up to us about her observations on medical gaslighting, her advice for women looking to push back, and more.
Zara Hanawalt: What inspired you to write a book about medical gaslighting?
Ilana Jacqueline: “Writing this book has always been about giving women something actionable to do about this situation that happens to so many of us, but the only way to do that was to first dissect and define it. I’m passionate about this because it’s something I spent the first 19 years of my life going through with no definition. I had a rare and undiagnosed disease that I was constantly belittled and told was something I was faking. Even after my diagnosis I experienced medical gaslighting again and again.
I wanted to write a book that showed how prevalent this was and how many different kinds of women it happens to — young and old, black and white, thin and fat, rich and poor. I had seen it all throughout my 15 years of patient advocacy.”
Zara: What have you learned about medical gaslighting through the process of writing this book?
Ilana: “I’ve learned that medical gaslighting is a pattern as old as time. Medical gaslighting is a rebrand. For so long (entirely too long) we have let women be told that if we don’t know what is wrong with you — that the problem is in your head, when in reality, we have never invested the funding, time or policies towards understanding the female body.
Calling out medical gaslighting is about refocusing the idea that the fault of misunderstanding women’s health is the fault of women. In reality, the stagnation in understanding women’s health is a very deliberate thing. We cast women out of clinical trials. We never invested in understanding how treatments for humans impact 50% of those humans. It was always easier and cheaper to ignore women complaining about their bodies.”
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Who's most at risk for medical gaslighting?
Zara: Why do women experience medical gaslighting so much more commonly, in your opinion?
Ilana: “Historically, women have had less opportunities to reach the kind of equality in general that would allow them to respond to gaslighting in society, business and in healthcare. We’ve only really recently put into effect the kind of laws and regulations that protect women in the workplace and in public. We’re not even close to having that kind of equality in healthcare. There is a serious power imbalance between female patients and (male or female) doctors that stems from the idea that doctors have all the information. And they don’t.
Men can at least feel a little more reassured that the diagnostic testing that they’re getting is up to standards for their gender. For instance, women undergoing diagnostics for a heart attack are getting the same test as men, when they aren’t the right tests for women, so heart attacks are often missed and damage to the heart is found later on after being told that their heart attack was a panic attack, indigestion or some other nebulous stressor.
Women also experience pain differently, our threshold for pain is often based on the pain we experience from our periods. We’re taught that period pain is normal. So any pain less painful than a period or equal to a period should be normal, or at least bearable. But when you have women who aren’t being diagnosed with uterine fibroids or endometriosis ever, or not until late in life, their entire spectrum of pain is inaccurate. We second guess our pain and we have no one to correct that. We begin to gaslight ourselves and then our daughters.”
Zara: Are there any other or specific demographics that are especially likely to experience medical gaslighting?
Ilana: “Black women are at criminally high risk of death just from giving birth in America. That isn’t some woke statement. It’s a statistic. The maternal mortality rate in 2020 for non-Hispanic Black women was 55.3 deaths per 100,000 live births, which was 2.9 times the rate for non-Hispanic white women. According to the CDC, more than 80 percent of those deaths were preventable.
This happens because of medical bias, meaning physicians (and their teams, including labor and delivery nurses) are not treating all their patients equally. Healthcare providers come into the exam room or hospital with a pre-formed opinion on those patients. So they treat those patients through the lens of that opinion.
Quality healthcare starts when your doctors listen, care, and take the time to get to know you as a person. When they fail to do that, when they act on that bias, it can be deadly. Studies show that when you have a doctor who is part of your own demographic, you have better health outcomes. Only 5 percent of physicians in the United States are Black and only 0.4 percent are Native American, that’s not enough doctors to give minority women a fighting chance to beat these statistics.”
Common signs of medical gaslighting
Zara: What are some signs they are being medically gaslit by their providers?
Ilana: “The main sign is that you are being comforted or shamed, but not given a plan of action. Sometimes a doctor can be rude or short, but if they still come up with a plan to diagnose, treat, or prevent disease, answer your questions and give you the time you need to understand their treatment plan–that is a success story.
Medical Gaslighting happens when you are redirected from the potential of getting better. You’re told your cough is nothing to worry about and you don’t need a chest x-ray. You’re told that you still have plenty of hair, so that hair loss and new weight gain probably has nothing to do with your hormones. You’re told they have sicker, more urgent patients than you and that you should feel badly for taking up space in a crowded system. If you’re wondering if you’re being gaslit, ask yourself, “is there a treatment plan?” “are they able and willing to answer all my questions?” “are they taking the possibility that this could be something serious seriously?” It can be easy to get lost in the ambiguity of an appointment when you’re intentionally left feeling embarrassed and overdramatic. Get over it. You went in for a reason. Don’t come home without an answer.”
How to advocate for yourself
Zara: Can you share some advice for people who fear they may be experiencing medical gaslighting?
Ilana: “Recognize that some doctors are not going to help you, no matter how strong an argument you make. Leave rooms that don’t serve you and don’t waste another second of your life feeling badly about doing so and getting a second, third, or tenth opinion.
If you’ve been seeing a provider over an extended period of time and suspect you’re being gaslit but aren’t sure, make a list of what happened at each appointment that left you feeling anything other than confident about the plan. (If there was one.) It’s easy to tell yourself it was just one or two moments of disbelief, but that your doctor does overall 'get you'. Sometimes you have to reaffirm what you’re experiencing on paper.
Know that medical gaslighting is hardly ever being actually yelled at, threatened, or laughed at. It is usually gentle, kind, and comforting–meant to get you to trust a provider when they haven’t done the work that should earn your trust. A doctor can be kind but utterly useless. You don’t need to be comforted by your doctor, you need to be cured.”
Zara: One thing that’s so difficult is advocating for your own health and seeking our information without falling into the trap of medical misinformation. Do you have any insights on this?
Ilana: “In the wise words of Doja Cat, 'Called your bluff, better cite the source' — seriously though, Dr. Google is the same doctor your doctor is using when they covertly minimize your chart and look up your diagnosis. It’s not just a smart thing to do to research your health, it’s a necessary thing to do. Just make sure you’re using a trusted source like JAMA or The New England Journal of Medicine and not your favorite influencer’s chiropractor’s blog. Confused about what you’re reading? Run it through ChatGPT, share it in a support group to see what other patients gleaned from it, or bring it in to discuss with your doctor to let them guide you (if they’re up for the challenge–or more aptly, the collaboration.)”
Zara: How can bringing awareness to the issue of medical gaslighting help move the needle?
Ilana: “I like to say there’s no minimum impact in patient advocacy. Even talking about your experiences with medical gaslighting with your coworkers at lunch or your family at holiday dinners can move the needle. When more women understand that what has been happening to them is defined behavior–they can clock it and stop it. They can leave a warning to other women in online reviews. They can finally convince themselves to find a new, better doctor who will treat them the way they should be treated.”
Zara Hanawalt is a freelance journalist and mom of twins. She's written for outlets like Parents, MarieClaire, Elle, Cosmopolitan, Motherly, Vogue and many others. In her (admittedly limited!) free time, she enjoys cooking, reading, trying new restaurants, and traveling with her family.