When Cindy Paniaq was diagnosed with tuberculosis in December, she was asked to quarantine herself for two weeks in her Igloolik home.

Her grandchildren had to temporarily move out and Paniaq says she found the empty house crushingly lonely. She spoke to a mental health worker over the phone, but says it wasn't nearly enough contact.

"I was going through mental issues because I didn't really understand what TB is, because they didn't really explain it to me," she said, adding she would have liked to have mental health support delivered by someone face to face.

Drug side-effects

Paniaq was diagnosed after a friend caught the disease and encouraged her to get tested. She did before she showed symptoms, which she says made the drug treatment that much harder.

Cindy Paniaq

Cindy Paniaq was recently treated for tuberculosis. She says social stigma surrounding the disease remains. (Cindy Paniaq/Facebook)

She says she felt fine before she started taking the drugs, but felt "very sick" for the two weeks she spent in isolation.

"They didn't provide enough information or proof that I had been diagnosed with TB, because I didn't have any symptoms before I was told I was positive," Paniaq said.

Dr. Frances Jamieson, a tuberculosis expert with Public Health Ontario, says the four drugs which make up the standard treatment plan all have side-effects that can be quite serious.

All patients need to be monitored closely for yellowish skin or eyes, which can be an indication the liver is being affected by the drugs, and tingling fingers or toes — which can be a sign the nervous system is being affected.

Vision and hearing problems along with nausea, vomiting and bleeding easily are also potential side effects, but Jamieson says patients need to stick with the treatment to beat the disease — and stop it from spreading to friends and family.

Kim Barker Nunavut chief medical officer for health

Nunavut’s chief medical officer of health Dr. Kim Barker says the territorial government is creating a strategy to reduce stigma, increase understanding of treatment protocols and address the colonial history of tuberculosis. (David Gunn/CBC)

"It is a very long process," said Jamieson.

"You want to make sure that you get rid of all the organisms and the other thing is — you need to be on multiple drugs to prevent the development of drug resistance."

Paniaq did stick with the treatment, but her isolation was not total because she still had to go out to get groceries.

"I posted on Facebook that I was diagnosed," she said.  "When I went out, people were like, 'Oh no, look at that,' I had that feeling [of being judged]."

She says the stigma persisted in the community after she was no longer contagious.

Treating stigma

Nunavut's chief medical officer of health Dr. Kim Barker says because of stories like Paniaq's, the territorial Department of Health is developing a community engagement strategy.  

"The key thing for us is how do we support families who have an individual that is isolated, so that individual does not feel like they are alone or being stigmatised, because stigma is a really tough thing to go through."

She says it's "critical" individuals are supported during their isolation, so they continue with treatment and get better.

To develop the strategy, the department is reaching out to local groups, mayors, Inuit organizations and using social media in a bid to make people feel comfortable about coming forward if they think they have tuberculosis.

The department is also preparing nurses in communities across the territory with tuberculosis-specific training. Part of that training is explaining the colonial history of tuberculosis treatment and why it might make some Inuit reticent to come forward.

Northern TB treatment suffers from colonial history  

Nearly half of the Eastern Arctic Inuit population was sent south for tuberculosis treatment between 1953 and 1961.

People of all age groups from children to elders were removed from their communities, often without informed consent. Since proper record-keeping was rare, many didn't make it back, leaving their families wondering whether they died from the disease or were living their lives somewhere down south.

For a while, a sanatorium in Hamilton, Ont., housed Canada's largest Inuit community. The mortality rate for southerners with TB in 1953 was 9.9 per 100,000 patients — for Inuit, it was 298.1.

C.D. Howe seen from the ship's helicopter

The C.D. Howe was equipped for medical service and transported hundreds of Inuit people to be treated for tuberculosis in southern Canada. (Johanna Rabinowitz Fonds/Archives of HHS and McMaster Faculty of Health Sciences)

Jaypetee Arnakak, is an instructor at Nunavut Arctic College in Rankin Inlet, Nunavut. While developing policy for the territorial government and with Inuit organizations, he helped develop the term for, and define the thinking around, Inuit traditional knowledge.

"Most Inuit realised that some of the earlier patients were not coming back and I think it frightened a lot of Inuit to a point where they didn't really want the medical intervention and as a result TB was never really eliminated," he said.

"For a long time the paternalistic approach of the Canadian federal government treated Inuit almost as if we were fauna."

He says the memories are still very present in the minds of Inuit today, as children whose parents were taken away — or children who were themselves removed from their families for treatment — are still uneasy around medical professionals.

"I think a lot of Inuit are distrustful of things that would even benefit them because of the past experience," said Arnakak.

"It goes back to the lack of trust. I think many people, many Inuit, view the qallunaat [non-Inuit] as an alienating influence rather than people that were empathetic to their needs."