'We're not being listened to': COVID-19 long-haulers describe fighting for medical care

Long-term COVID not fully understood, feds warn Canada's chief science advisor Mona Nemer warned that many long-term effects of COVID-19 aren't fully understood.

TORONTO — COVID-19 long-haulers say it’s been a fight to receive medical care, specifically in regard to receiving a proper diagnosis and treatment.

Ruth Castellanos says she was sick with COVID-19 in mid-May, but still wasn’t feeling well weeks after her cough and fever had subsided.

She says she called her doctor to explain her ongoing symptoms, which included shortness of breath, fatigue and neurological issues.

“I was told to get back to exercising and to get back to my life and I couldn’t even get out of bed,” Castellanos told CTV News Channel on Saturday. “I talked to someone else until finally another doctor diagnosed me with post-viral syndrome from COVID.”

When asked why she had to fight so hard for her doctors to see something was wrong Castellanos explained, “Doctors don’t know very much about this, nobody does, it’s a brand new virus.”

She added, “It’s just so hard to explain how debilitating this has been and how life changing this has been and it still is.”

Patients who are experiencing persistent COVID-19 symptoms months after being infected with the virus have come to be known as “long-haulers.” Scientists have found that some of the long-term effects include heart damage as well as neurological issues like brain fog and difficulty thinking.

Castellanos says that her initial symptoms were brushed off by doctors as anxiety.

Jackie Lorre, a registered nurse at St. Mary’s Hospital in Kitchener says she shares Castellanos frustrations.

“At times I think we feel like we’re not being listened to,” Lorre said. “I think the belief system at the beginning of the pandemic was you are infected for two to three weeks then the symptoms disappear and you are ok.”

She added, “I think it’s been quite a shock to the health care experts that there are many of us experiencing long term consequences from this virus.”

COVID-19 long-haulers are calling on public health experts to improve the country's state of readiness for fast spreading viruses and to expand knowledge among primary care physicians to allow for faster diagnoses.