I t’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.
Sufferers are also often alienated by the unhealthy dynamics that characterize many doctor–patient interactions in the Western world today. The power imbalance between who can authoritatively describe what is going on in the body and who can’t has a deep impact on how illness is experienced and navigated.
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.
The subtle and oftentimes brutal rejection of my experiential knowledge and suffering slowly anesthetized me against hope.
I can see why this happens. Doctors face time and financial constraints, heavy workloads, and distrusting and contentious patients. They are taught to prioritize their technical capabilities and are faced with the challenging task of combing through irrelevant information for what is medically relevant. As a way to cope with a daily barrage of problems and complaints—and the deaths of some of their patients — some physicians become callous and numb.
The practice of medicine in the 21st century is a complex affair. But even under such conditions, appreciating the singularity of an individual’s life is essential to providing authentic care and good medicine. As the late neurologist and author Oliver Sacks wrote, practical scientific medicine and existential medicine are separate but inseparable — “not contradictory but complementary.”
Paternalism?
Paternalistic relationships between doctors and patients in today’s medical system cause harm to many individuals. For me, they delayed my diagnosis, protracted my illness, denied me a sense of being validated and understood, and conspired to push me deeper into the depths of my despair. The practice of modern medicine doesn’t have to be this way………. Join or login below to continue reading.
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