Medical gaslighting is a serious issue that patients should be aware of in order to properly advocate for themselves.
To gaslight someone is to manipulate them into questioning their own reality—essentially, to make them believe they’re crazy.
As awareness of many different social issues has grown in the last few years, the word “gaslighting” has become part of the general lexicon. To gaslight someone is to manipulate them into questioning their own reality—essentially, to make them believe they’re crazy. Let’s say a friend is wearing a navy blue sweater, and I tell her it’s actually white. No matter how she tries to prove to me that the sweater is in fact blue—comparing it to color swatches of navy, showing me something white that does not match the sweater—I brush her off and insist that the sweater is white. Eventually, she might begin to doubt herself. She might think, “Maybe the sweater really is white. Maybe I’m just color-blind.”
This modern twist on “The Emperor’s New Clothes” is a simple example, but unfortunately gaslighting is used in much more serious ways. It happens in politics, in abusive relationships, in work dynamics where one person has more power than another. And, as Lyme warriors know all too well, it happens in the medical world, too.
A recent New York Times article “Feeling Dismissed? How to Spot ‘Medical Gaslighting’ and What to Do About It” brings the issue to light as it relates to COVID-19 as well as gender and racial inequities. The article discusses how long-haul COVID patients, suffering with persistent symptoms, have often felt dismissed by their doctors. Moreover, research shows that women, people of color, and geriatric patients are more likely to have their symptoms dismissed or misdiagnosed.
Medical gaslighting goes beyond telling a patient, “Your labs look normal” or “Don’t worry, everything is fine.” It makes the patient question their own experience of their body. When I first started experiencing fevers, extreme fatigue, body aches, hypoglycemia, and other symptoms, medical practitioners would ask, “Are you sure you’re not just depressed?” They’d say, “Maybe it’s all in your head” or, “Maybe you just need to exercise more.” After a while, I started to wonder if maybe they were right. I tried forcing myself to exercise, which only made me feel worse. I started covering up my symptoms, fearing people would think I wasn’t capable of keeping up with my peers.
I suffered unnecessarily with undiagnosed tick-borne illness for years, and a big reason for that suffering was because I was made to believe I wasn’t actually sick at all. By the time I was accurately diagnosed, I was bedridden. It took intravenous antibiotics, Herxheimer reactions, a relapse, and a complete reframing of my life for me to achieve remission. Had I been taken seriously when I first presented with signs of tick-borne illness, I might have gotten better with just a few weeks’ worth of antibiotics. The whole trajectory of my life would have been different.
I was diagnosed almost twenty years ago, long before I eventually got COVID-19, and long after too many people with other illnesses that don’t fit into a neat diagnostic box had been dismissed unnecessarily. Patients with autoimmune disorders, chronic fatigue syndrome/myalgic encephalitis, and even heart disease have long experienced medical gaslighting. All of us have had to learn to advocate for diagnosis, treatment, and validation.
Now that medical gaslighting is garnering more attention, patients can be more aware of its signs, and can take action against it. The New York Times article lists the following red flags for medical gaslighting:
- 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, for example questioning whether you have pain.
- Your provider refuses to discuss your symptoms.
- Your provider will not order key imaging or lab work to rule out or confirm a diagnosis.
- You feel that your provider is being rude, condescending or belittling.
- Your symptoms are blamed on mental illness, but you are not provided with a mental health referral or screened for such illness.
I dealt with every item on this list as I went from doctor to doctor. So how did I finally get diagnosed? I saw a Lyme Literate Medical Doctor (LLMD) who, first and foremost, listened to my story. He looked at my entire medical record, not just my acute symptoms. He asked questions, and allowed time and space for me to ask my own. He ran specialized tests. Most of all, he validated what I had always known to be true: that no one knew my body better than I did.
Beyond finding a good practitioner, it’s also important to speak up for your concerns and needs. It can be overwhelming to try to remember all of your symptoms and questions, especially in today’s 15-minute appointments. I suggest writing out your medical narrative—when your symptoms began, how they’ve progressed, and how they present now—as well a list of your medications, and your questions, and present that document to your doctor before the appointment. This will allow them to “hear” your whole story without interruption. I also suggest bringing an advocate with you to your appointment who can take notes, help speak up for you, and help ask questions. This could be a family member or friend—anyone who understands and supports you. And if you aren’t getting satisfactory answers or feel you aren’t being heard, switch providers until you do. Your symptoms are real, you deserve to be believed, and you deserve to be treated appropriately. That doesn’t make you crazy; it makes you human.
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The above material is provided for information purposes only. The material (a) is not nor should be considered, or used as a substitute for, medical advice, diagnosis, or treatment, nor (b) does it necessarily represent endorsement by or an official position of Global Lyme Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.