Updated: Nov 19, 2020
“Drug seeker.” “Hysterical.” “Depressed.” “Non-compliant.” “Difficult.” “Doctor shopper.” “Mentally unstable.” “In Denial.”
For years, Anita knew something was wrong with her health. Her skin had been an issue and her hair was beginning to thin more and more. Her body felt like it was rejecting itself. She felt a fatigue that was beyond explanation. Being the proactive patient she was, she made an appointment with her doctor to talk about her symptoms that were greatly affecting her quality of life. Sadly, instead of listening to her concerns and digging deeper into a diagnosis, her doctor, with his nose in her chart, asked a question. “How’s your marriage?”
His inquiry left Anita gobsmacked. “How’s my marriage?” She couldn’t believe that her doctor would ask that question when she was clearly concerned about her physical symptoms. She felt dismissed, unheard, and hurt. Sized-up and diagnosed with an emotional issue, all the while being misdiagnosed, misled, and mistreated ...by an MD.
Unfortunately, Anita’s story echoes the experiences of many people with lupus and invisible illnesses that have been subject to similar treatment and/or have been labeled one of the terms listed above. Those terms, and the treatment associated with them, are a practice of subpar healthcare known as “medical gaslighting.”
This blog is intended to shine a light on this issue, why it’s a problem, and (hopefully) fine tune your intuition so that you can be your best advocate and avoid falling into this fiery trap.
What is it?
Medical gaslighting is when a health-care professional downplays or blows off symptoms and tries to convince a patient that their issues are caused by something else, or even imaginary. Anyone is susceptible to gaslighting, and it is a common technique of abusers, dictators, narcissists, and cult leaders; however, it can be the most deadly when it is perpetuated by a doctor or medical professional.
Signs of medical gaslighting may include:
Assuming a diagnosis (or lack thereof) based solely on sex, race, ethnicity, gender identity, age, sexuality, weight, or social/economic status.
Blaming symptoms on a mental illness without providing a referral to a psychiatrist or screening for the illness.
Minimization of disabling or dangerous symptoms.
Refusing to order key imaging or lab work.
Refusing to engage in a dialogue with the patient.
Lack of shared-decision making.
Shaming, embarrassing, belittling, or manipulating a patient.
Why does this happen?
On average, lupus can take six years to diagnose. This can be an arduous and frustrating process for both the patient and the doctor. If a doctor grows weary of digging deeper into unraveling the mystery of your symptoms, they may deflect their frustrations by “gaslighting” you. You may be called “difficult” for asking for more lab work or “attention seeking” if you ask for a second opinion. You may even be called a hypochondriac for asking too many questions.
Another notion is that doctors tend to look for the simplest, quickest, and most logical explanations for their patients. In the medical community, it is an aphorism historically known as the “horse/zebra theory.” This diagnostic hypothesis follows the logic that if there is a predetermined measure to think something is the obvious choice, then best to choose the path of least resistance. For instance if an animal has hooves, four legs, and nays - then it's most likely a horse. I mean, if you live on a farm and heard a trotting noise coming down the path, you wouldn’t assume it was a zebra, right? The same idea is applied with a patients’ diagnosis. Doctors look for horses, not zebras in their exam rooms. Sadly, with lupus being as complicated as it is, it can often prance like a horse, and sometimes LOOK like a horse, but is definitely NOT a horse. Though lupus is not a rare disease, it can be misleading, and mimicking of other more common conditions. Because of that, lupus is a #TeamZebra disease all the way (and you can bet the horse on that).
If a doctor is "fed up" with running tests, and peeling back the layers of your symptoms to get to the core of your diagnosis, they may project those feelings onto you through egotistical comments, blaming you for your symptoms, or dismissing you completely.
Unfortunately, biases, stigmas, and racial disparities in our medical institutions are other catalysts in medical gaslighting. Many of our institutions (and the medical professionals that are employed there) are so steeped in biases that they may not even be aware of. Doctors may “curb qualify” a patient based on their race, ethnicity, gender identity, weight, etc. without doing their due diligence, research, and actually listening to the patient's needs.
This is exactly what happened to lupus warrior Anita (in the story above), what has happened to me, and thousands of other lupus patients.
So what do we do about it?
How you can avoid it:
First of all, it is important to remind yourself that though doctors are experts in certain fields, YOU are the top expert in YOUR body. Always pay close attention to your symptoms, particularly if they are new and affecting your quality of life. If you feel that a doctor or medical professional is unable to address your symptom or complaint, ask for a second opinion. You absolutely have the right to do that. Cast off any shackles of guilt, they are unnecessary and only weigh you down.
Here are some additional tips:
Make your moans be measurable. Meaning: chart your symptoms and be specific. Include descriptions of your symptoms, when they occurred, how severe they were, and how long they lasted.
Keep an account of your laboratory, imaging, and other diagnostic testing.
Come with questions to your doctor's appointment. If you run out of time, use your doctors online portal to pose any missed questions or follow-up questions.
Remember your value. Just because a doctor says something, doesn’t mean that it’s a fact. You deserve to be treated with respect, and if your doctor isn’t showing it, time to move on.
Educate yourself about gaslighters' behaviors: they project, they tell you other people are liars, they don’t take responsibility for mistakes, their actions don’t match their words, and they even throw in a nice word here or there to confuse you. By educating yourself, you can protect yourself.
Report any instances of abuse to The Federation of State Medical Boards (FSMB). They provide contact information for every state medical board in the U.S. and its territories.
In closing, I want to give you some sobering advice. Condescension can kill. If a doctor doesn’t believe you, or is manipulating you into thinking that your symptoms are in your head, and you indeed have lupus, that can be very dangerous. Time to stand up and fight for your right to be heard, treated with respect, and shown dignity. The more you are aware of medical gaslighting techniques, the quicker you can identify them and avoid them, because the ONLY thing that should be gas-lighted is your furnace.
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2020.