The Tokyo woman first suspected she was infected with the novel coronavirus last July when she started running a fever and generally feeling unwell. In mid-August, she was rushed to a hospital by ambulance after falling unconscious with convulsions and difficulty breathing.

But no positive diagnosis was forthcoming. It was only after the woman used an antibody test kit that had become commercially available to test for COVID-19 that she learned the truth. By then it was October.

In the months since then, she has been living a nightmare.

With no one to turn to and short of funds, the woman desperately wants society to realize that some COVID-19 patients suffer long-lasting aftereffects that leave them unable to perform even the simplest chores, let alone hold down a job, and deprive them of the chance to return to a normal life. 

“I have lost so much over the past year,” said the woman, who is in her 20s.

A graduate student of prestigious Kyoto University, the woman finds it distressing that scores of hair strands are on her pillow when she awakes each morning.

She feels exhausted constantly, and finds going out even for short periods extremely challenging.

Every few days, she runs a mild fever. Some mornings, she is so sick she has to spend the entire day in bed.

“I have been living this way for months,” the woman said bitterly. “I suppose I am getting used to it.”

The first time she felt there was something wrong with her health was late July when she experienced a fast heartbeat and dizziness. When she measured her fever, it exceeded 38 degrees.

The woman immediately suspected she was infected with the novel coronavirus. Several days before she fell sick, the woman visited a hospital in Kyoto Prefecture, where she lived at the time. It later emerged that cluster infections had occurred at the hospital.

The woman inquired at public health centers and hospitals in the prefecture about her suspicion she may have contracted COVID-19.

But she was not allowed to take a tax-funded diagnostic test because they said she did not exhibit symptoms common among coronavirus patients, nor show signs of oncoming telltale pneumonia.

She self-isolated at her home, but her health continued to deteriorate and she continued to run a fever above 38 degrees.

She rushed to a hospital by ambulance in mid-August in very distressed state. Then in October, she got hold of an antibody test and came up with a positive diagnosis.

When she visited a Tokyo clinic experienced in dealing with the aftereffects of the novel coronavirus, a doctor told her that the symptoms she was experiencing were the aftereffects of the coronavirus.

“Many things are still unknown about coronavirus symptoms,” she said. “I felt helpless about spending alone without any clue as to why I was developing these symptoms.”

At the graduate school, she set out to help create a medical system that patients with intractable disease can access to gain adequate treatment, drawing on her experience as hypersomnia patient.

But last year she felt too ill to watch even the computer screen and attend online classes.

School officials told her she had to repeat a school year to take more classes and further research to finish her course.

The money she had saved to cover her school expenses through work quickly evaporated as her hospital visits were not covered by public funds. This was because heath officials deemed her case was not COVID-19. She could not even work part time.

Her prospects at being able to return to graduate school soon remain murky.

Although she has yet to decide whether to drop out of the school, she is on the job hunt. But the opportunities are few due to the stagnant economy, she said.

When the woman finally landed a job interview, her prospective employer asked her why she wore a cap.

After she explained it was to hide hair loss, the official said, “Come back when you are recovered.”

“I don’t know where I can vent my anger and helplessness that I have been experiencing over the past several months,” she said. “I just pray the aftereffects of COVID-19 will soon be widely recognized by society.”