The evening I convinced my boyfriend that he had leprosy defined a moment in our relationship that I can best describe as glorious. Leprosy represented a gold medal in my lifelong pentathlon of hypochondria, and I had never been remotely close to it before.
A little-known fact about hypochondriacs is that we don’t just tell ourselves that we have food allergies, epilepsy and alien hand syndrome (yes, it’s a thing). We are happy to persuade others they do, too.
I had finally found a man who would let me play doctor, so to speak. I would spend hours cataloging his every symptom, scanning his body for skin cancer and looking for medical connections in his complaints that a real doctor might miss.
For example, his feet hurt. He thought it was due to ill-fitting shoes or the fact that he pounds the New York City pavement all day as a commercial real estate broker. So naïve, I thought, running for my laptop, where I discovered that he had cat scratch fever. Just that one symptom, but still, it was possible.
My hypochondria began in high school.
All of the ailments turned out to be really boring: strep throat, anemia, low blood pressure, poor diet. Hypochondriacs get sick like everyone else, but our common cold symptoms are actually the beginning of the hantavirus.
The advent of Google was a windfall for me – and trouble. I suffered from breast cancer, mesothelioma and a heart defect. I contracted swine flu, malaria and a brain-eating amoeba. The doctors couldn’t find any of these ailments, however, no matter how hard they looked.
A year before I met the boyfriend with leprosy, I woke up paralyzed on my left side, blind and unable to speak.
I couldn’t see the phone, so calling for help was impossible. I pushed myself out of bed with my right arm and leg, landed hard on the floor and crawled for what seemed like an hour, finally reaching the front door and somehow opening it. I sprawled in the hallway until a neighbor found me and called 911.
The neurologist said I had suffered a complicated migraine, since my initial symptoms seemed to have resolved. I had regained vision, could move my left limbs and speak again. He said to go home and eat three daily meals, sleep eight hours each night and exercise for a half-hour every morning.
Over the next nine months, I became increasingly ill. Being single and living alone, I had no one to witness my profound fatigue, unrelenting migraines, left-side weakness, difficulty walking, confusion, memory loss, aphasia, brain fog, visual disturbances, ringing in the ears, tremors and twitching, numbness in my left hand, wooziness, insomnia, inability to concentrate, photosensitivity, stammering, ataxia, difficulty speaking, forgetting how to perform everyday tasks, low body temperature, increased allergic response and heart palpitations.
I’m really sick!
Finally, after poring over my lab results from an infectious-disease doctor, I noticed something she had ignored: a past infection for tick-borne relapsing fever and Colorado tick fever. I had been rescuing dogs for dozens of years and had pulled three times that many ticks out of my own skin.
I found a tick disease infection specialist in Manhattan and was soon told I had Lyme disease and five other tick borne co-infections.
The Lyme disease bacterium had been flourishing for months and had entered my brain and central nervous system. I was still in treatment when I started dating my boyfriend. He knew I was sick, and he was accepting of my limitations.
Eventually he started sharing a few of his own medical complaints, and we started bonding in illness, a language I understood.
The night of the leprosy diagnosis, my boyfriend had what looked like an irritation circumnavigating his hip area near the band of his sweatpants.
I ruled out 50 other diseases until I landed on the one I was sure of: leprosy.
My boyfriend’s leprosy, I determined, was the type that starts as a small lesion and eventually leads to blindness and facial disfigurement.
I found a leprosy clinic at Bellevue Hospital in Manhattan, a quick bus ride across town, one of only 11 in the United States.
The rash of love
The day of his appointment, I felt a kind of lightness I hadn’t had in years, relief not just that I was able to persuade another person to take me seriously, which is a boon for any hypochondriac, but that I didn’t have leprosy.
I had someone to care for and love. I could transfer some of my neurotic energy to him – and, of course, save his life.
My boyfriend said the leprosy doctor didn’t quite laugh at him, but he did smile for the entire visit and sent him away within moments of looking at the rash, which the doctor assured him was nothing serious, probably just an irritation that would go away in time. I was profoundly relieved for a few minutes.
But if the rash wasn’t leprosy, what was it? And why hadn’t the doctor performed a biopsy?
I took more photos of the small red bumps and typed “rash” into Google images for the 10th time. That’s how a hypochondriac says, “I love you.”
Nikki Moustaki is author of the memoir “The Bird Market of Paris.”