Has Your Doctor Ever Gaslit You?
Last updated: August 2022
"You're too young to be sick."
"There's nothing physically wrong with you. You're depressed."
"You're tired because you live far away from your family, and you must be homesick."
Nearly every doctor I saw while searching for a diagnosis seemed to have some excuse as to why I couldn't possibly be feeling as bad as I said I was. When I first became sick with lupus, I slept over 10 hours a night and still woke up exhausted. Clumps of my hair fell out in my hand or in the shower. The brain fog was so severe I couldn't pronounce words longer than three syllables, and I'd frequently forget what I was trying to say in the middle of a sentence. But nearly every doctor I saw brushed off my concerns. Some refused even to order a blood test.
"Let's not run too many tests. They can be confusing," a rheumatologist once told me.
"Confusing for whom?" I wanted to ask. By that point in my search for a diagnosis, I'd long since taught myself to read my own bloodwork results.
Fatigue and lupus
If you've ever been to a doctor who doesn't take your pain or fatigue seriously, then you might have experienced medical gaslighting. The term "gaslighting" refers to the act of doubting or minimizing a person's opinions or experiences. Medical gaslighting occurs when a medical professional dismiss your pain.
Many patients with chronic illnesses, especially invisible illnesses like lupus, endure years of medical gaslighting before being diagnosed. I have read that women are especially more likely than men to be diagnosed with a mental illness when they show symptoms of heart disease.
Medical gaslighting phrases
You might be a victim of medical gaslighting if you've ever heard the following phrases from a doctor or nurse:
"You're not really sick. It's all in your head."
"I have other patients much sicker than you."
"There's no reason why you can't walk/work/function like a normal person."
"Everyone gets tired sometimes."
"You're too young to be sick."
"Your tests came back fine. That means there's nothing wrong with you."
Reflecting on my life with lupus
Because I couldn't find a doctor who would take my pain seriously, I spent 2 years of my early 20s seriously ill with untreated brain inflammation. My brain inflammation left permanent damage to my memory–damage that could have been prevented if the doctors I trusted to care for me had listened and done their jobs.
Twelve years after I first became sick with lupus, I look back on my experience with medical gaslighting and feel deep empathy for the frightened young woman who just wanted to know what was happening to her body and mind. A part of me will always wonder why the doctors I saw didn't value my life and health enough to even listen to my symptoms. I'm very lucky to now have a wonderful rheumatologist who is kind, empathetic, and responsive. But for many of us with chronic illnesses, the pain of not being taken seriously by the medical professionals whom we trust to save us lingers for years after our diagnosis.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?