My Diagnosis Story, Part 2
Last updated: October 2021
During my second semester of grad school, I continued to search for a diagnosis. I was growing sicker and sicker. The brain fog intensified and the fatigue became unbearable. I started throwing up nearly everything. Pounds and clumps of hair fell off. I could fit into my jeans from high school. Even worse, I started to harbor paranoid delusions about people at school. I suspected a much-loved teacher of hating me and wanting me to die. Sometimes I would hallucinate, watching the walls breathe or rising out of my body to stare down at the top of my head. I would cry hysterically for minutes, only to suddenly giggle at the blank wall in my apartment. My roommate had long since moved out in annoyance at my weird behavior.
The 7th doctor diagnosed me with lupus
The 7th doctor whose office I stumbled into would be the one who saved my life. Like all the others, she tested for Lyme and hypothyroidism. She also asked if I was behaving abnormally or having unprotected sex. Unlike the others, she believed me when I said no, and she never stopped searching for answers.
Every time a test came back negative or I answered no to a question, her eyes would narrow and she would frown, almost as if she were angry and trying to hide it. At times, she seemed personally offended that my condition eluded her. Then she would fill out another lab slip and send me to the phlebotomist. Ultimately, her curiosity and determination saved me.
A test for anti-double-stranded DNA came back positive along with a positive ANA. After a year of suffering through severe fatigue, nausea, and horrifying cognitive symptoms, I was finally diagnosed with lupus with a side of brain inflammation called cerebritis. In short, my immune system was attacking my central nervous system.
Finally, a lupus diagnosis
After a life-altering diagnosis, most people are shocked. They might feel devastated or heartbroken. But after the months I spent searching for a diagnosis only to be told there was nothing wrong with me, my reaction was different than most people’s. When my doctor told me I had lupus, I was relieved. Maybe I had an incurable disease that was currently eating my brain. But at least I finally knew what was wrong with me.
I wasn’t crazy.
I wasn’t making it all up.
I wouldn’t be disregarded and left to suffer without help.
Skepticism before a lupus diagnosis
Some patients struggle for years to get a diagnosis. Sometimes the skepticism of society, the medical industry, and the doctors that we trust with our lives can hurt almost as much as the disease itself. The pain of not feeling heard when they so desperately need help can stick with a patient for years. Nobody should ever have to prove they’re really sick. We should be allowed to spend all of our energy on getting better.
After being dismissed and ignored by doctors, I finally had a diagnosis. But it would take many years for me to learn how to live with lupus and to understand the true meaning of the word “chronic.”
How are you most likely to respond when someone offers you unsolicited advice about your lupus?