I Was Misdiagnosed 7 Times
Last updated: March 2023
The first time I saw a doctor about my chronic illness, I was 22. I had just finished my first semester of graduate school. For months, my hair had clogged the shower drain in the apartment I shared with my roommate. In the mornings, I sometimes found myself running to the bathroom to throw up. Eventually, nausea grew from a morning routine to a symptom that lasted the whole day. But what concerned me most was the constant mental fog and confusion that prevented me from doing my schoolwork.
I made an appointment at a clinic near campus that took my insurance. I didn’t check the doctor’s Healthgrades ratings. I didn't insist on seeing a female doctor, as I know to do now. Back then, my experience with doctors was based on the sore throats, ear infections, and ingrown toenails I had contracted as a child. My experience with doctors could be summed up like this: You go to the doctor, they listen to your breathing with a stethoscope, they prescribe you some pills, and you take them and get better. When I walked into the doctor's office the week after I realized something was wrong with my body, I fully expected to leave with a prescription that would help me return to my normal, healthy self within the week.
Sometimes I’m still shocked at how naïve I once was.
How often are people misdiagnosed with lupus?
About 46 percent of lupus patients are misdiagnosed in the first years of their illness.1 More than half of all lupus patients are told by doctors that they aren’t actually sick and that they’re imagining their symptoms. Sitting on the crinkly paper of the examination table that day in January, I had no idea I was about to become a statistic.
"I'm exhausted all the time," I told the doctor when he entered the room. "My hair is falling out, and I’m having trouble concentrating."
He nodded to give the pretense of listening. "You're depressed," he then told me immediately.
"But I don’t think I am," I answered.
"You’re living across the country from your family. Grad school is stressful," he said, as if this explained why I was throwing up or collapsing from fatigue at school.
Advocating for myself
I opened my mouth to tell him that I had lived away from my family since I was 18 years old and that I didn’t actually find graduate school that stressful. By then, he had stopped listening. He scrawled the name of a psychologist on a prescription pad and handed it to me before leaving the room. Our interaction lasted less than 5 minutes, but the pain of being dismissed and disregarded stuck with me for years.
Over the next year, my symptoms worsened dramatically. Fatigue hijacked my life. I would sleep 10 hours and wake up exhausted. The brain fog grew so severe I had trouble pronouncing words longer than three syllables even though I had once been very articulate. In the mornings, when my thinking was most sluggish, I struggled to even make instant oatmeal. The untreated brain inflammation from my undiagnosed lupus caused severe depression and psychosis. I started to believe my classmates all hated me. Even though I could barely drive or take care of myself, I visited doctor after doctor, collecting misdiagnoses like they were Pokemon cards. I was misdiagnosed with Lyme disease, Bipolar Disorder, pregnancy, thyroid disorder, and schizophrenia.
Most lupus patients are sick for 7 years before they receive the correct diagnosis. Due to the severity of my disease and the way I aggressively pursued a diagnosis, I was diagnosed after a year. I was fortunate to finally find a General Practitioner who actually listened to my symptoms and was determined to get to the root of my health problems.
My advice to undiagnosed patients is this: Don’t give up. You know your body best, and if you know that something is wrong, keep searching for the right doctor and the right diagnosis until you find it.
Which resource do you think is most urgently needed in the lupus community?
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