One morning in 1990, twenty-four-year-old Jing woke up with a peculiar sensation in her legs. She peeled back the bedsheets, timorously peered under her pyjama-pants, and gasped. Her legs were covered with small, purple blots, making them look like canvases onto which an artist had splashed ink all over. Her husband of a year rushed her to the local hospital in Beijing.
When my mother recounted the incident more than two decades later, she remembered being unusually calm. “We didn’t know what it was,” she recalled. “So I didn’t feel much fear.”
“We didn’t know what it was,” agreed my father. “So I was pretty scared.”
Jing’s doctor told her that she had thrombocytopenic purpura. Purpura, the Latin word for “purple,” described her symptoms caused by bleeding underneath the skin. A blood test revealed the reason: Jing’s platelet levels were dangerously low (hence “thrombocytopenic”). On a subsequent visit, it dropped even further. Her doctor suspected that the cause was immune-mediated and wanted to draw Jing’s bone marrow for further assessment. There is a possibility, he suggested, that she would need a bone marrow transplant.
Since around the 1900s, China had become more or less receptive towards Western medicine. Suspicion of Western influence, exacerbated by the Opium War with the British in the previous century, and of practices such as surgery, which admittedly must have seemed horrifying to the uninitiated, had started to give way to a grudging admittance to the efficacy of Western therapies. By the end of the century, Western medicine and Chinese folk medicine were often practiced in tandem, sometimes within the same institution.
But the culture of medical practice in China remained Chinese. The doctor’s position of power and as wielder of knowledge was to be respected and not questioned. The very idea of empowering the patient must have seemed laughable. Jing’s doctor simply told her that her disease was caused by problems in blood production, which may be fatal.
“He made it sound very scary,” said my mother, twirling her hair uneasily. “There was no comfort at all.”
“And you didn’t expect it from him?”
“He’s the doctor.”
The doctor’s attitude was officious and apathetic. Yet the interactions between Jing and her physician typified the strained relationship between doctors and patients in China even today. Physician remuneration is tied to drug sales, so patients often do not trust their prescription-pad-happy caregivers. During my visit this past summer, I discovered that several of my friends and relatives were routinely prescribed antibiotics as a way to “control inflammation,” without their knowledge of what caused inflammation and how antibiotics should be taken. In this medical climate, visiting a doctor is often seen as a last resort when one is sick.
Jing did not want her bone marrow taken from her (“I found the idea invasive,” she said). Her doctor gave her “some steroids” to take to “boost her immune system” and sent her home. Jing spent the next two weeks in bed as she awaited her fate. Her husband would rush home after work every day. “Still alive?” he would ask. He was only half joking.
What surprised me was that neither of my parents sought further explanation for my mother’s disease. That they did not seek a scientific explanation was expected: education in China at that time did not cover much biology, and neither of them had majored in the natural sciences in college. But neither did they attempt to explain her disease using the traditional Chinese medicine paradigm, which was popular then and now. Nor did they claim a spiritual explanation, which would have been common in my grandparents’ times.
“Why didn’t you find out more about your condition?” I asked.
She shrugged. “We were young. We didn’t know much. The doctor said to take the drugs, so I took the drugs.”
Blissful ignorance shielded my mother from much stress. She was also lucky. A brief search on Medscape revealed that her doctor had treated her for immune thrombocytopenic purpura (ITP), which turned out to be what she had. If she had had the similarly symptomatic thrombotic thrombocytopenic purpura (TTP), which has a mortality rate of up to 90% if untreated, the outcome might have been very different.
Jing began taking the drugs. It made her plump, which, in a picture of her next to my scrawny father, made her seem disproportionately bloated.
“Didn’t that affect your self-image? Your outlook on life?” I asked.
“I think it was a combination of youth and ignorance,” said my mother. “I grew up in a rural factory town and had just moved into the city. I was full of hope for the future. Even the doctor’s insensitive words could not touch that. I just had a feeling, at the time, that I would recover.”
“Did you tell your parents? Your friends?”
“I didn’t want them to worry. I did everything as usual. I did feel tired sometimes, but the possibility of dying, which the doctor had suggested, never crossed my mind.”
She showed signs of recovery. The purple blotches soon faded and her platelet count began to rise. She grew even plumper from the steroids. Her parents, unaware of their daughter’s condition, thought she was just getting fat.
“I am their eldest daughter. I was in the city and they were back home in rural Shanxi. I’d always carried a lot of the responsibilities in my family, so naturally I expected myself to brave this alone.”
For the next three years, the purple blotches occasionally reappeared, but less frequently and severely each time. Finally, when she became pregnant three years later, thrombocytopenic purpura left her for good.