Most people in Germany are focused on when they can take off their face masks or go on vacation. Calls to end pandemic measures are getting louder. But not from Edith Schmitz. She pulls out a handful of long, black hair from a plastic bag — a memory of her pre-COVID life. Before she was infected early this year, Schmitz was proud of her full head of hair.
There is still no established definition for long COVID, but 58-year-old Schmitz is one of its victims. In February, she was admitted to a hospital in Bonn with a high fever, dark lips and blue fingernails. She stayed there for three weeks, then entered rehab.
She still had symptoms 12 weeks after the infection. Schmitz keeps a list: hair loss, perspiration, insomnia, headaches, muscle spasms, lethargy and concentration and memory issues commonly referred to as "brain fog."
"Every day I am completely done for," Schmitz said, having woken up that day at 4 a.m. "Everything I have to do takes a lot of effort. And somehow I try to find a way to get by."
Simple tasks a feat of strength
The virus has robbed Schmitz of her love of life and turned her into a different person. She has retreated from her social life, and does not talk much to neighbors, friends and family. Their response is often: "You seem fine. Stop moping around," she said. Her self-confidence has taken a beating.
Her employer, an educational institution, has been more sympathetic. She can do her work from home, and she comes into the office only once a week. That gives her a sense of accomplishment, but it also takes a lot out of her.
"Sometimes I suddenly forget names of colleagues I've known for five years and have just spent the entire morning with," she said. "Then I forget how to write invoices even though I have done bookkeeping for years."
Surrender is not an option
Schmitz often commiserates with Pia Chowdhury, who suffers from similar problems. Chowdhury's struggle with long COVID began last October. Some of the doctors who treated her didn't take her symptoms seriously.
After weeks of isolation and panic from a sudden fight to breathe, the 41-year-old can count 20 symptoms that hit her like a crashing wave, then recede just as quickly. She said she can't shake the sense of helplessness and that she is on her own.
Chowdhury joined a British support group in November, with whom she can exchange experiences. She listened to the political debate over long COVID in the United Kingdom, which confronted the issue earlier than Germany. She found the group helpful enough to start her own in Bonn in April. It is called Post COVID: Recovered, but not healthy.
"It does us all good to hear that others have the same symptoms," she said of the 18 long COVID sufferers who have joined, including Schmitz. "I don't just want to get through this sickness, I also want to help others who struggle with it."
In a WhatsApp group, Chowdhury keeps the group informed of the latest news about long COVID. She holds a video call every two weeks to try to answer questions. Now she is planning a second group.
COVID's long shadow
"I always say I have a defective battery, which can only charge to 20%," Chowdhury said in an attempt to describe her condition.
She is taking part in a long COVID study in Cologne and said she is getting a little bit better, but progress is slow. She wants to see German health officials, such as Health Minister Jens Spahn, give the condition more attention and resources.
Some studies suggest 10%-20% of COVID patients still have symptoms 12 weeks after infection, according to Jördis Frommhold, Germany's leading long COVID expert. That would mean at least 360,000 of Germany's roughly 3.6 million confirmed cases suffer from long-term effects.
"The economic impact is also enormous if these people don't get rehab. We can't tell just yet how many people will be unable to work," said Frommhold.
Her140-bed clinic on the Baltic coast in northern Germany normally treats people with respiratory issues, allergies and psychosomatic difficulties. Now her work has expanded to include long COVID.
"I'm still treating people from the first wave. Those registering now will get a spot in January at the earliest," she said, criticizing Germany's lack of rehab facilities for the emerging condition. She voiced concern that patients are falling through the health system's cracks: "Germany's a bit asleep at the wheel on this issue."
This article has been translated from German