By ABC investigative reporter Emily Baker
Anita* survives in the gap between living and dying. Her once full existence is now stunted by fatigue, difficulty breathing and severe joint pain.
Photo: Unsplash / Daan Stevens
She can no longer taste or smell, works only limited hours and struggles to concentrate or properly comprehend things like books and TV shows.
Anita lives with long Covid, which means she has continuing symptoms from her battle with coronavirus almost 18 months ago.
But because she lives in Tasmania, which has had far fewer cases of the virus than mainland states, she is struggling to find appropriate support.
"Because there's so few of us - and Tasmania is very, very lucky, there's been a small amount of people - I don't think there's much interest in actually learning anything about it," Anita said.
"I've contacted quite a few trials in Melbourne and Sydney and they say we can't be involved because we're in Tasmania, so it's just like being in limbo really."
The state has recorded 233 cases of coronavirus and 13 deaths.
It had its biggest outbreak in April last year when the North West Regional Hospital and North West Private Hospital had to be closed, 1300 staff were sent into isolation and the Defence Force was called in due to the rapid spread of the virus.
Anita is among 48 health care staff to since pursue compensation for continuing coronavirus symptoms.
Earlier this month, Tasmanian Health Service secretary Kathrine Morgan-Wicks told a parliamentary scrutiny hearing her organisation had paid more than $AU1.5 million to affected workers and expected to pay more than $AU3m in total.
"We have tried to work very closely with each of these impacted people," she said.
"We are all learning about long Covid-19 as we go, including the best symptom management and the best case management.
"We have worked to put significant support in place for our staff."
Anita and her North West Regional Hospital colleagues Phoebe* and Annette think greater expert support and community understanding is needed, and want people to be fully aware of the risks of coronavirus.
All have hidden their identities to protect their employment and avoid trolling from community members still angry with the hospital over the north-west outbreak.
"I went to work, I did my job and I did it to the best of my ability, so why do people think I did something wrong?" Anita said.
"I didn't do anything wrong, and neither did the other people who are still struggling."
An investigation into the crisis, released in December, found there was no single cause for the spread of the virus and that staff had responded with "great adaptability and resourcefulness", but made a series of recommendations to improve future responses, many of which have already been implemented.
No taste, no smell, no answers
Annette, a medical attendant, tested positive for Covid-19 on 12 April last year, and "it spiralled downhill from there".
"It got to the stage I couldn't hold a conversation with people very well, I was so breathless, I was just worn out, so fatigued and tired the whole time," she said.
"Then a couple of weeks into it I started getting a lot of chest pain. I felt like I had an elephant sitting on my chest."
She later found out there was a build-up of fluid in the sac around her heart but was not able to get any in-person specialist support because she was still testing positive for Covid-19.
"The cardiologist on the phone put me on medication for the worst-case scenario of heart failure until such time as I was Covid negative, which was terrifying to hear," she said.
"I was Covid positive for 57 days.
"Being at home at night time, you go to bed and you don't know if you're going to wake up the next morning."
She continues to suffer heart palpitations and chest pain, has a constant ringing in her ears, a loss of taste and smell, and difficulty with balance.
Like Anita, she has joint pain and brain fog and has to return to bed within an hour of getting up in the morning.
"I've emailed a couple of specialists on the mainland even trying to get somebody to see us that might have some answers," she said.
"I know they probably can't cure us but just somebody who might have an idea of what we're going through and only one of them has emailed me back, the rest haven't even replied."
Annette is too anxious to return to her workplace and was recently admitted to an in-patient psychiatric unit for treatment for PTSD.
"It's just a bit scary at the minute to think what the future holds for us," she said.
Phoebe, a nurse, tested positive for Covid-19 on 11 April last year, days after she first started experiencing symptoms.
She took personal leave to avoid work after being told she was not eligible for a test because she did not have a temperature.
Her initial fight with coronavirus left her afraid she was dying and more than a year later, she's still struggling with symptoms.
"I don't feel like I'm the same person anymore," she said.
"I've gone from a very active, high-functioning person, mum, wife, daughter, to feeling like I'm just useless."
She wants centralised support for people with long Covid, who she said had been left to find each other and navigate specialist support for themselves.
"There are studies on the mainland in almost all the large centres but they're not open to us because we're not residents," she said.
"I would wish this on no-one."
All three women urged people to get vaccinated as soon as they could - and take coronavirus seriously.
"I want people to understand it's not just a flu, it's not just a conspiracy and it's not the government trying to give you an injection," Anita said.
"It is actually real and it's out there. Nobody wants to be like this, and the trouble is you don't know how long you're going to be like it for because there is no answer for us."
*Names have been changed
- ABC