Before she got sick with long COVID, Vivien* was at the top of all of her classes at school. She loved playing basketball and netball and running around with her dogs — she’d even take herself for runs around her family’s sprawling property in regional New South Wales, just for fun. She’s still only 12 but for the longest time Vivien has dreamed of being a vet when she grows up. “And she was so social,” her mother Katie* says. “My husband and I are both introverts. Not V — she would party every day if she could.”

Now, two years since she caught SARS-CoV-2 for the first time, a “good day” for Vivien looks nothing like it used to. She’s always exhausted, but her achy limbs might feel less tingly and weak; perhaps her upset stomach is calm, and her brain fog has cleared enough that she can do some school work or call a friend. On a really good day, she can manage a visit with her grandparents, so long as she’s prepared to spend the evening in bed. “Long COVID makes my body feel weak,” Vivien says. “But I tell myself I am still powerful.”

She’s strong because she has to be. Like many kids with long COVID Vivien has seen a dizzying number of doctors, not all of whom have believed or helped her. She’s made the tricky transition to homeschooling, learned to manage her turbulent symptoms with pacing and medication, cried fat tears of frustration after doing too much and wiping herself out.

“I want people to know that I’m not lying, [long COVID] is real and can happen to anyone,” Vivien says. “I want people to know I’m not just trying to get out of doing school or sport — I wish I could do sport … I wish they understood I am just trying to save myself from being stuck in bed in pain for days afterwards.”

*Names have been changed at families’ request so they could speak frankly without fear of reprisal.