They call themselves the COVID long-haulers - Kiwis who are still suffering months after catching COVID-19.
New research has begun in Christchurch into the long-term effects of the virus, and proof is growing that symptoms could last for months or years.
On the surface 26-year-old Freya Sawbridge looks young and healthy. But she hasn't felt that way in a long time. Sawbridge says she is the proof that for some COVID patients, youth and good health are no defence.
"I want to debunk the myths that COVID doesn't affect young people and it only kills those with underlying health conditions. That is not the truth."
She is what's known as a COVID long-hauler, people who've survived the initial infection only to suffer the effects for months.
"There are hundreds of thousands of people worldwide who are young, like myself. I'm 26, with no underlying health conditions and COVID. And we've had COVID for five months now."
It's the last thing Sawbridge was expecting when she first got sick in March. After five weeks isolating in her Auckland apartment she was deemed recovered, but it didn't last long.
"The night I was released from isolation it was a very joyous occasion. I was celebrating with my parents and it was the first affection I had in five weeks. And then I relapsed that night."
Hers was considered a mild case of COVID. And she says compared with what came next, it was.
"I've had six relapses and it sort of follows the same symptom pattern each time, which is I'll get diarrhoea, a really intense dizziness, a lot of chest pain, back pain - which is from the lungs - muscle spasms, different parts of my body go sporadically numb."
It's left her unable to study, work or even enjoy life's simple pleasures. She has no sense of smell or taste and no idea when it all will end.
Sawbridge is far from the only Kiwi dealing with COVID for months. Infectious diseases physician Prof Michael Maze treats patients who were hospitalised in Christchurch. He says the virus can have profound long-term effects.
"A number of them have taken a long time to get better. They've just been exhausted. They've been breathless. They've been getting chest pains. They've been feeling a bit fuzzy in the head. But also it takes quite an emotional toll."
Just how many people have long-term COVID still isn't understood. But worrying signs have begun to emerge.
One study of hospitalised patients in Italy found two months after infection nearly nine in 10 were still unwell. Even mild cases can face long-term problems. Figures from the UK suggest 12 percent of all cases will have symptoms for more than a month.
"Some people who might have been not sick enough to end up in the hospital might still be suffering effects weeks to months later. And this group, we think might be quite large," says Prof Maze.
Breathlessness is a common symptom - COVID's well-known for attacking the lungs. But it's now clear COVID is more than a flu or any other respiratory virus.
Prof Mark Richards is director of the Christchurch Heart Institute and one of the country's top cardiologists.
"There's a consensus emerging it's at least 10 times more dangerous than the standard seasonal influenza, and it's not just a respiratory illness," he told Newshub Nation.
For those with existing heart conditions a severe case of COVID is often fatal, with between a third and a half of patients dying.
"The way it attacks the organs is not just filling you up with pneumonia and giving you infection and inflammation in your airways and your air sacs. It does all these other things. It also potentially gets to your kidneys and your brain and your heart."
Even healthy patients are at risk of heart damage. Many long-haulers suffer heart palpitations months after they were diagnosed.
"There's a high likelihood that at least a proportion of people who get cardiac involvement with this virus will have long-lasting damage, possibly anywhere on the spectrum from trivial to very severe."
The trouble is we may not know the full impact for months or even years to come. Other coronaviruses like SARS and MERS left patients with symptoms several years later.
And while so much is unknown about COVID, long-haulers struggle to be taken seriously, even by those who are meant to care.
"During one particularly bad relapse, I actually went to Auckland Hospital," Sawbridge told Newshub Nation.
"The doctor came and she completely dismissed me. I was really shocked. And she just said, 'If you could walk in here, I can tell you're absolutely fine.'"
Last Friday she was one of 60 long-haulers to speak to the World Health Organization, asking for recognition and research.
"They took us seriously and they recognised it. And they're going to help us find research and build rehabilitation.
"Death's not the only thing that matters in this pandemic. You have to count lives changed. And all of us long haulers, our lives have changed for months on end and possibly for the rest of our lives."
