Lyme Disease Fatality File

An anthropologist’s view of Lyme disease and suicide

It’s been almost a year since I tried to kill myself.

As a doctoral student living in the leafy suburb of Brookline, Massachusetts, in 2015, I chanced upon a tick—a tiny vampire the size of a poppy seed—that changed my life forever and nearly brought it to an end.

After being bitten by the tick, I was plagued with full-body joint pain, muscle twitching, night-time seizures, cardiac abnormalities, depression, fatigue, and other neurological disturbances. Early on, this confluence of symptoms confounded doctors.

Upon hearing my account, one neurologist shook his head. “That doesn’t make any sense,” he said, before suggesting that my caffeine intake might be responsible.

I was told repeatedly by various doctors that the mysterious ailment darkening my existence was psychological in nature, most likely due to stress. It took 12 months before I was finally diagnosed with Lyme disease.

But little changed after the diagnosis, contrary to what I had naively expected. My doctor prescribed four weeks of antibiotics and told me that if the medication didn’t work then it wasn’t Lyme. The antibiotics didn’t work.

Exiled from my body

Suddenly, I was alone exiled from my body and others. My disease has been exacerbated by the social consequences of having a complex chronic condition. When an illness isn’t medically recognized or refuses to progress in a straightforward way toward better health, those around you often grow impatient or suspicious. People stop asking how you are or act as if your failure to recover is somehow a personal weakness. These silences and reactions can drive the chronically ill into isolation, despair, and existential confusion.

Doctors hold the authority to determine which bits of a patient’s story are useful, which interpretations to act on, and which diagnostic tests are made available. The doctors and specialists I consulted consistently interrupted me, refused to order tests, and denied the severity of my symptoms. The subtle and oftentimes brutal rejection of my experiential knowledge and suffering slowly anesthetized me against hope.