Jemma Lee says she’s had problems with fatigue her entire life, but in the last decade migraines and frequent bouts of the flu have turned that fatigue into a new beast.
The 52-year-old was diagnosed three years ago with extreme myalgic encephalomyelitis (M.E.), a neuroinflammatory disease known to many as chronic fatigue syndrome. It causes extreme tiredness and affects various body systems to the point where Lee says she is “unable to move.”
Lee was shocked to learn recently that her four applications for assisted living in Victoria have been declined by the Vancouver Island Health Authority due to “unscheduled care needs.”
‘Prisoner in my own home’
“I was so incredulous,” said Lee, who lives alone in a 240-square-foot home on Galiano Island, where she’s forced to chop wood for warmth and doesn’t have access to filtered water.
“I’m a prisoner in my own home.”
After moving to Galiano in 2012, Lee said her symptoms worsened. Last year, she counted 140 days of seizures, which can affect various parts of her body, leaving her “unable to speak” for as long as 45 minutes, she says.
According the ME/FM Society of British Columbia, nearly 600,000 Canadian suffer from varying forms of the condition.
Galiano Island services not enough
Lee said she regularly sees a doctor and a community nurse, and receives online emotional counselling.
While she’s happy with the support she’s had, she said the services on Galiano are not advanced enough to help her as she deteriorates.
“Right now I rely on my friends to take me to my health appointments and it’s a minimum 12-hour day to … take the ferry and come back,” she said, adding that her appointments typically last no more than 40 minutes.
“[My friends] have to be able to cope with me if I have a seizure … and take responsibility for me.”
With low income and no family in B.C., she said only assisted living in Victoria can meet her needs and give her nearby access to specialized services like physiotherapy, occupational therapy, social workers, and acupuncture.
Peter Luckham, Chair of the Islands Trust, said Lee is “not alone” in her difficulty accessing assisted living as a Gulf Island resident, because the services are hard to come by.
“At the end of the day, you end up leaving the islands” for more advanced services, he said.
Unpredictable health issues
Lee said Island Health doesn’t want someone with “unpredictable health issues,” as there are days where she could be walking relatively well, and others where she’s “seizuring on the floor.”
She recently wrote an open letter to Island Health, detailing her condition and imploring them to reconsider.
A statement from the authority says it is “aware of Ms. Lee’s concerns” and is “reviewing her application with her in order to provide the most appropriate care plan for her needs.”
Lee said that she and others with the disease are fighting for it to be recognized as a biological condition in the same way diseases like Parkinson’s and multiple sclerosis are. The term chronic fatigue syndrome, used widely by medical professionals, reduces the legitimacy of the disease by making light of it, she said.
Not taken seriously
Dr. Mohamed Gheis, a neuropsychiatrist in Victoria who runs a rehabilitation program for people with neurological disorders, said M.E. patients are still “not very well understood” by Canadian health-care workers.
Right now, these patients are “not receiving the care they deserve as sources of disability,” he said.
Lee said she’s had doctors ask her to explain M.E. “When you go to the hospital, you’re having to advocate for yourself constantly,” she said.
Elizabeth Sanchez, the president of the ME/FM Society of B.C., said some M.E. patients have had doctors laugh at them or berate them, and some patients have committed suicide because “they just can’t bear their lives any longer.”
She said the society has been trying to get the province’s Ministry of Health to understand the severity of the disease, but it’s a slow, frustrating process.
“They don’t understand that there is a crisis for M.E. patients,” she said. “But there is a light at the end of the tunnel … We just don’t know how long that tunnel is.”