“It’s midterms,” he said. “You’re probably just anxious. Are you anxious?”
“No,” I said.
He ignored me, scrawled “Anxious” across my chart, and prescribed Paxil. The drug didn’t help me breathe, but it did disorient me for weeks. I feared another doctor’s dismissal, and I quit the drug and suffered until the ailment abated.
Ten years later, I had a similar experience here in Tampa. I was on the way to work when a pain in my side dropped me to my knees. I felt an invisible knife slide beneath my ribcage, and then I felt like something was leaking into my body cavity. Short on cash, I tried to drive myself to the hospital, rather than call an ambulance. When the horizon went vertical and the pain blurred the edges of my vision, I pulled into a doctor’s clinic for help. I can still picture the nurse looking over a manila file folder at the front desk. He refused to look up at me and shooed me away. Eyes still on his chart, he said, “You’re probably fine. Just go to the ER to get it checked out.”
I crawled to my car on all fours in a business suit, now aware an ambulance was a must. The pain was too great to use the phone, and I collapsed on the black asphalt next to a huge blue dumpster. I looked up at the sky and noticed two rainbow-stockinged feet in Converse shoes sticking out of the blue bin. The dumpster-diver heard me moaning and sat up like a prairie dog sentinel. He jumped out, knelt next to me, and whipped out a cell phone. He called an ambulance and stayed until it arrived; it was the only kindness I received that day. The ambulance took me to a physician who ran a series of tests. The tests were inconclusive.
“She’s probably one of those housewives who just wants benzos," he stage-whispered to my nurse. "Send her home. I think it’s just . . .” but I finished for him: “Anxiety.” I was readmitted to the hospital by dawn the next day, suffering from multiple, sharp, kidney stones.
When, in the spring of 2017, both of my arms suddenly went numb and felt like they were on fire, I knew that I was going to have a long fight ahead of me to find out what was wrong. I went to the emergency room, but the doctors examined me and said they found nothing.
“You’re probably just anxious. Are you anxious?”
“No,” I said, feeling an overwhelming sense of déjà vu.
He ignored me, scrawled “Anxious” across my chart, and proscribed Xanax. I considered strangling him with his stethoscope. I left that doctor and visited, not one, but twelve other specialists — hand, wrist, nerve, shoulder, and so on — and each one either ruled or said they suspected that the ailment was the result of anxiety.
I had a breakthrough when a physical therapist treated me for a shoulder injury that I knew I did not have.
“I believe you,” she insisted. This was the first time anyone in the medical field had said those words to me. “And,” she added, “I think I know what it is.” She asked me to hold up my hands like a goalpost and to open and shut my fists rapidly for 30 seconds. I went numb, shoulder to fingertip. She ran a few more tests and declared, “You have thoracic outlet and pec minor syndrome,” translating, “your chest muscles are crushing the nerves in your neck.” Thanks to her, four months later, I was healed.
All of these experiences made me wonder: Is anxiety the new hysteria? Doctors in the 19th century often diagnosed ailing women with hysteria because they believed that the existence of the uterus made them emotionally unstable. They were so unstable, in fact, that men must regulate their bodies, lest they make improper choices on their own behalf. Thus “hysteria” and “hysterectomy” have the same prefix; “hystero” is Greek for womb or uterus. I don’t mean anxiety isn’t real. I do mean that, in my experience, doctors seemed to equate my female body with the propensity for an inability to regulate my emotions, which they diagnosed as anxiety, despite my insistence that I did not suffer the symptoms that align with that disorder. These assumptions about my body and my gender allowed them to dismiss me altogether, much as women were dismissed via hysteria 175 years ago. What’s more is that this assumption caused them to miss multiple diagnoses that could have saved me weeks, if not months, of agony.
Three months ago, the shortness of breath that I experienced in 1999 came back with a vengeance. I am desperate to breathe, in so many ways. If, or when, the next physician dismisses me, I’ll continue to search for someone that operates from the initial standpoint that my troubles may be physiological rather than psychosomatic. I’m not hopeful, but I remain insistent.
Do you suffer invisible diseases? I want you to know that you are not alone. If you do, let me be the one to say what no one else has: I believe you.
Kacy Tillman is a displaced Texan who is an Associate Professor of English and Writing at the University of Tampa. Follow her on Twitter @kacytillman or check out her website at kacytillman.com.
This article appears in Dec 7-14, 2017.