Decades for a Diagnosis, Part 1: At a Loss
I've hurt for a long time. My main symptoms have always been debilitating, grinding back pain; achy joints made worse by exposure to the cold; exhaustion even on days of complete rest; and severe body tenderness that made most clothes abrasive on my skin. Many days I struggled to get out of bed, take a bath, or make meals for myself. And for decades I had no clue why my body had turned on me.
I hurt back in high school, before the average person even had language for autoimmune illness. An otherwise healthy 16-year-old didn't get asked about arthritis, not in the 80s. Old people got arthritis, and I figured I had plenty of time before my knees started popping and my fingers grew gnarled. In the meantime, teenage me got a doctor’s note to sit out of gym class. Embarrassed, I sat on the sidelines while other girls ran laps, teasing me for being an “old lady” with every zip past me.
Ivy league sized problems
A few years later a spine specialist suggested back surgery. It was risky under the best of circumstances. There was also a long recovery period—for some of it I’d have to be flat on my stomach—and I was only a sophomore at Yale. I was terrified of surgeon error—accidental paralysis—or worse, waking up in more pain than before. If they couldn’t name it before surgery, I didn’t have confidence I’d wake up in the hospital with any answers. The cons ultimately outweighed the pros, and I nixed surgery.
The back pain continued more frequently. One crisp day in fall, as I walked with friends across Old Campus, I stopped still as a statue. The pain at the base of my spine was so sharp and intense I couldn’t speak. I couldn’t even inhale. It felt as if someone had dug a pocket knife into me several times in succession. One hard cough and I would’ve lost my balance and collapsed. My friends knew I had a “bad back,” and chatted me to distraction until I could slowly limp along again. Still, I was really unsettled. What if I’d been alone? Or crossing the street?
I couldn't sleep
The pain also kept me from sleeping well—a condition called painsomnia—which led to spotty class attendance. I was spending more time in the university hospital, missing more parties, more labs. Placed on bed rest, I would stare at the ceiling and grip the bed railings as I braced for wave after wave of jagged back spasms. It was lonely, isolating: I didn’t know any other 19-year-olds dealing with this, period. I was eventually referred to Yale-New Haven, a highly accredited hospital, for another battery of tests, another cycle of doctors’ visits and medication trials. No matter how hard I prayed or crossed my fingers, the results were always the same: inconclusive.
By the time I graduated, my symptoms were flaring up more frequently and intensely. My mom and I played Nancy Drew trying to get to the heart of my back pain mystery. We traveled all over New York City looking for answers and solutions. In Chinatown, we picked up pricey and bitter homeopathic herbs to steep in a special clay pot and drink straight, no chaser. On the Upper East Side, I had my tongue measured and palms studied before an acupuncturist lightly pricked my skin with needles. In Brooklyn Heights, I saw a chiropractor whose adjustments left me unable to walk without using a broom as a makeshift cane. I cried leaving his office, fearing things would only get worse.
No backing down
As the 90s wound down I discovered Dr. John Sarno, a doctor famous for his no-drug, mind-body connection approach to back pain. By now words like facet syndrome and soft tissue injury floated through my doctors' visits, and I didn’t like any of them. It’s what professionals wrote in your chart when they didn’t have other answers. And as I was to learn, several diagnoses seemed to hover around women more than men. A young black woman with no other extraordinary health issues? It had to be in my head. Not that it was made up, but at some point, my medical team decided that there were only a handful of diseases a woman my age could have. Once I had negative results, I was handed off to another specialist, and the cycle of appointments began again.
Out of desperation, my mom paid $600—and I guarantee we never had $60, let alone $600 to spare—to get me an appointment with Sarno. He was an expert, which made us confident. He could cure me, surely. Except he couldn’t.
Expert at a loss
After speaking to Dr. Sarno many times, I walked away feeling he was just as confused about me as everyone else was. He didn’t recognize my symptoms as those common to his patients. I was young and living at home without major stressors beyond my back pain. I recalled back in college, where friends jokingly called me a narcoleptic for the way I ran out of energy: dramatically, like someone pulling a plug on a TV. Eventually, I ran out of uptown lectures to attend. The drug-free doctor scribbled some scripts for me and sent me on my way.
By my 30s I was advocating more effectively for myself. I learned to be forcefully assertive with doctors: maintaining eye contact, using all my big words (thanks Merriam-Webster), and working my Yale degree into every new consultation—particularly useful in mostly white medical spaces. They couldn’t dismiss me if they remembered me, so I made sure they remembered me. I was the black female Yalie who refused to be pushed aside.
But still, I got sicker
At the same time, I was getting sicker more often, in ways I thought were unrelated. I could barely keep my eyes open at work, catching catnaps in bathrooms or libraries at lunch. I had mono in high school, and that’s the level of fatigue I functioned at much of the time. I was getting extremely sick every six weeks or so, and given stronger antibiotics each time for what I thought was a nagging bacterial infection. My absenteeism at work—using sick days immediately, and most of my vacation days as sick days—became a serious issue. I was in therapy on and off over the years for depression, but as this illness runs in my family, I didn't connect this to physical pain. After all, people were in pain all the time, especially women. I half believed it was psychosomatic, as many doctors had surmised. How else to explain it?
Editor's note: Next week, Nira's diagnosis story will continue, and she will thankfully receive a diagnosis that changes her life.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?