From Diagnosis to Distinction

From an MS diagnosis at 17, to one of the highest honours a Canadian citizen can receive, Diane Sims’ journey is one of courage, advocacy, and unstoppable willpower.

When Diane picked up the phone and heard the words, “This is the Governor General’s office calling from Rideau Hall in Ottawa,” she could hardly believe what came next: she was being appointed to the Order of Canada.

“I felt so humbled. So honoured,” Diane recalls. “I thought back to starting the first MS Chapter in Sault Ste. Marie, when I was just 18. That moment brought tears to my eyes.” 

It’s a call few Canadians will ever receive, and one that marked the culmination of a life devoted to advocacy, writing, and fighting for the dignity and rights of others.

The Order of Canada, one of the country’s highest civilian honours, is awarded to people whose outstanding contributions have shaped the country. For Diane, who’s lived with multiple sclerosis since her early teens, it’s not just a recognition – it’s a reflection of decades of determination, resilience, and hard work. As she says, “MS defined my life, but I never let it define me. While it set some parameters, I’ve spent my entire life pushing those parameters.”

That call didn’t just recognise a lifetime of service. It closed a powerful circle that began nearly five decades earlier, when Diane was diagnosed with multiple sclerosis – a disease that would shape her path but never limit her.
 

Her Diagnosis

Diane’s first symptoms appeared when she was 14 years old – a sudden, unexplained loss of vision in one eye. At the time, doctors couldn’t find the cause, even though she’d been flown by air ambulance from Sault Ste. Marie to Toronto’s University Hospital. It wasn’t until she was 17, returning from a weekend trip with friends, that the pieces fell into place. A tingling in her legs spread rapidly, leaving her unable to walk by the next morning. She was flown by air ambulance again from her hometown of the Soo to Sunnybrook Hospital in Toronto, where, after a second spinal tap, she received a diagnosis of MS.

But it was how this news was delivered that would stay with her forever. She remembers the exam room vividly – one bare light bulb overhead. Alone and vulnerable, without either of her parents there, a doctor, legs crossed, told her: “You have MS. You’ll be in a wheelchair soon, bedridden by 27, and dead by 35.” 

Diane didn’t flinch. Instead, she gave the doctor a sharp look and, in her words, responded with language she’d never used as a “good Baptist girl.” “F*** you,” she said. In that moment, that defiance became her mantra. And it was a moment that set the tone for the rest of her journey.

Moving on From Diagnosis

Within a year of being diagnosed, Diane was already pushing back – not just against the disease, but against stigma, silence, and systems that weren’t inclusive of “people like her.” 

In 1976, at 18 years old, she co-founded the first MS Chapter in Sault Ste. Marie, helped raise funds through MS Canada’s Carnation Campaign, and began writing publicly about her MS diagnosis and experience, with the hope that no other young person would be told what she had been.

“I wanted to be a voice,” she says. “I wanted researchers to find something that could stop this disease.”

Despite experiencing multiple MS attacks along the way, she went on to study Religious Studies at the University of Waterloo and completed a second degree in Journalism. She later became editor of the Manitoulin Expositor, working long hours in a newsroom she loved, even as her symptoms got worse. She worked at other newspapers, magazines and CBC radio. Her openness about her disease wasn’t common in journalism at the time. “Early in my career, one editor told me never to mention I had MS if I wanted to work again,” she says. “But I told people, it’s who I am.”

She left The Expositor to return to Ottawa’s Carleton University where she earned her Master of Journalism degree.

Expressing her Loss Through Words

In her late 30s, life threw her another challenge: ovarian cancer, the same disease that had taken her sister who also had MS. At the time, Diane was told she’d have a year to live. She went through six abdominal surgeries, and later, was diagnosed with breast cancer – she survived them both.

Out of that pain came her next great accomplishment: her second book, An Ovarian Cancer Companion. It was the first Canadian book written specifically for women navigating ovarian cancer in Canada. When a pharmaceutical giant purchased enough copies to distribute her book to every OB-GYN in Canada, she felt uplifted by the thought that other Canadian women, experiencing a challenging diagnosis, might find strength and support through her words.

That book, along with her lifelong advocacy, would later be acknowledged in her Order of Canada appointment. 

Diane has written six books. Her latest, an autobiography entitled Living Beyond The Shadow was released in November 2024.

A National Honour, a Personal Victory

Diane was officially named to the Order of Canada in December 2024, and it’s a moment she still finds surreal. “I wear the lapel pin everywhere now,” she says. “And I use the initials CM after my name. Member of the Order of Canada. It’s hard to believe sometimes.”

The award recognizes not just her advocacy work for people with MS, but her contributions to cancer awareness, accessibility rights, and public service. As a writer, speaker, and advocate, she has spent decades trying to create the same kinds of support systems she once desperately needed.

She even helped change government policy. During her time on the Eastern Ontario Health Board, she publicly opposed over-the-top board spending just after layoffs of frontline nurses – making headlines and prompting new rules limiting how taxpayer dollars could be used.

Diane reflects on the Order of Canada ceremony in June 2025, “I had to go in front of the Governor General and bow. In that moment, I winked at her, and she smiled back at me. I rolled over to the spot where they read my Order of Canada citation which recognized my writing accomplishments and my lifelong work in the areas of accessibility, multiple sclerosis and ovarian cancer. Thinking back on all the moments I’ve dedicated to advocacy throughout my lifetime I never expected it to lead to me receiving an Order of Canada, but there I was.”

Continuing to Fight and Continuing to Give