Sandra Dunn says ever since she recovered from coronavirus she has lost contact with people in her life who do not understand her ongoing struggle with long COVID.
After receiving her two vaccine doses, Ms Dunn went for a catch-up at Blacksmiths Beach in late October with a friend and her son, who was unknowingly carrying the virus.
"I was the only one that ended up with long COVID," she said.
"I get short of breath, I lose my train of thought, I have heart palpitations. I have so many things that just aren't me.
She said one of the worst things about long COVID is the lack of knowledge about the condition.
"I was let out of quarantine with all the certificates under the sun to say that I was COVID-free.
"I've not been isolated by family, but alot of people don't understand … I don't have a social life now."
Ms Dunn is looking to connect with other people in the Hunter region who are also struggling with post-COVID health issues.
"I want to set up a support group for people who are genuinely isolated … just for a chat," she said.
Long COVID 'complicated'
Newcastle-based respiratory specialist Peter Wark has begun research into the condition known as long COVID and said as case numbers increased in Australia a clearer picture was emerging.
"Very clearly there's a proportion of people who have persistent symptoms that go well beyond that two to three months, and we call that post-acute COVID, or long COVID," he said.
"How common this is is still unclear. There are quoted rates of between about 10 per cent to a third of patients, and unfortunately that can occur in anybody, at any age, and with any severity of acute illness."
Professor Wark said support groups were a good idea to help people navigate their illness, but urged them to continue to seek medical advice.
"If people have got concerns they should seek help and discuss that with their doctors.
"This is an illness which we're still learning about and we don't have all the answers at the moment."
