Michelle Stewart was diagnosed with terminal kidney failure as a result of her battle with anorexia and bulimia, and died last year at age 49.
Stewart held a high-profile communications job with the B.C. Ministry of Health, and wrote a blog about her struggles. Her blog has now been published as a book called Shell.
"Our hope is that people will realize they're not alone," said her sister, Karen Flello, on why Stewart's family had the book published.
"I just think it's time to start talking about this. And if this gets people talking, then, that's a start," said Stewart's former partner, Kirk Mason.
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Flello, Mason and Dr. Julia Raudzus, medical director of the adult eating disorders program at St. Paul's Hospital, told BC Almanac host Gloria Macarenko about Michelle Stewart's life, her illness, and the state of eating disorder care in B.C.
Manifested as a teenager
Each entry in Shell is a sad and brutally honest revelation of what it's like to live with, and face death from, eating disorders.
One chapter is entitled Desperately Seeking Skinny. Stewart writes, "The truth is that this condition is the result of a 32-year unrelenting and painful quest to be thin."
Her sister remembers seeing signs of a problem three decades ago.
"I think at age 16 her behaviours would have been what we considered problematic, but at that time there wasn't a lot known," Flello said.
"By the time she was 18, though, it was clear this was a bigger problem. We tried to get her some help in Vancouver, and we knew it was descending into something that was absolutely a mental illness."
Flello remembers that her sister would always be worried about her weight and constantly check herself out in the mirror. She would never eat in public, and had to leave school for a time because her anxiety was so bad.
'A very secretive thing'
But Stewart managed to maintain a high-profile professional career despite her disorder. Her partner, Kirk Mason, only found out about her anorexia and bulimia three or four months after they moved in together.
She told Mason she'd understand if he wanted to end their relationship. They stayed together for 16 years after that.
"I didn't see a lot, because this is a very secretive thing," he said. "There were some things we couldn't do… It was a source of frustration at times. We certainly talked about it, but we'd never, ever, ever, ever argue about it."
He said that moving in with him and his daughter was a very difficult decision for Stewart. How could she maintain this double life in a small condo with one bathroom?
But she did, and when she did, Mason looked for answers. But he described Stewart as "the captain" when it came to handling her illness.
"She would only drive the ship so far, and then it was over," Mason said of her treatment attempts.
People need to be ready
Dr. Julia Raudzus said that people can be diagnosed with eating disorders at any age, and only about one-third of people diagnosed will make a full and complete recovery.
She said that while there is a stigma that all sufferers of mental illness face, eating disorders face particularly strong stigma, which is a barrier to getting help.
And she says the forms of help are getting better.
"Michelle had an illness over a very long period of time, from a period when there was very little understanding of eating disorders, to a time when we have a greater understanding, and a greater understanding of what services are going to be beneficial for individuals," she said.
"If you put someone in a treatment that they're not prepared or wanting to do, the benefit of that treatment might not be the expected result that we hope for."
But that's not to say that you just give up on someone, Dr. Raudzus said. She said that even if someone's not ready at one time for treatment, it doesn't mean they won't be ready with some extra encouragement from loved ones, or extra time.
To hear the full story, click the audio labelled: New book captures voice of woman who died of eating disorders