Janice MacMillan recalls driving home from work trying to breathe through a flare-up of excruciating chest pain, all while contemplating this heavy question: “What’s the point of living if this is my life?”
MacMillan has suffered from chronic pain for more than 45 years. She once felt hopeless, alone and invalidated — until she found a new purpose.
The 62-year-old woman has made it her life’s mission to help people with chronic pain in a province where people wait years to see specialists and where pain clinics are understaffed.
“I was meant to be here and I’m fighting hard so that every person on the South Shore, even Nova Scotia, not be left behind,” said MacMillan, who is originally from Ontario but moved to Liverpool, N.S., in 2021.
MacMillan’s experience is not unique. More than 20 per cent of Canadians live with chronic pain, an invisible condition advocates say is still widely misunderstood by not only the public but even doctors and nurses.
After experiencing barriers to the health-care system first-hand, MacMillan started a grassroots support group for people with chronic pain on the province’s South Shore, just as similar groups are cropping up in other areas of the province and across Canada.
These advocates want people with chronic pain to know they’re not alone
MacMillan was diagnosed with fibromyalgia — a condition that causes widespread pain in muscles and soft tissues — in her late 20s. At the time, there were no treatments, and she was often dismissed by health-care professionals, given the condition was not yet widely recognized.
She was denied medications and had no information about how to deal with her lifelong affliction, which — to this day — can be debilitating.
So she suffered.
“I don’t think people understand what chronic pain can do. It’s like someone taking a chisel and chiseling a part of you little by little,” said MacMillan, who was an ICU nurse before her condition forced her to stop that line of work.
“My family didn’t believe me and the world didn’t believe me. They treated me like I was an idiot or I was not mentally all together.”
Her pain was made worse by a head injury resulting from a fall in October 2015 and from being hit by a truck in January 2016. These accidents caused brain damage and impacted her short-term memory.
Four years ago, she decided to leave her life in Ontario behind and move to the Maritime province where her ancestors came from.
She also left behind her pain specialist. Unable to access one in a timely manner in Nova Scotia and discovering Yarmouth Regional Hospital did not have a staffed pain clinic, she had an epiphany.
“Long ago, I said I wanted something good to come out of all the pain, all the silent screams and all the tears,” she said. “I had to go through all that so I understood what other people have gone through.”
She decided to organize a support group for people with chronic pain, funding the startup costs with her own savings.
The South Shore Chronic Pain Support Community — which was recently incorporated as a non-profit — holds monthly meetings where people come together in an empathic environment to share experiences and learn coping strategies. They also invite guest speakers, such as acupuncturists, to offer tips on pain management.
Peer support groups for people who suffer from chronic pain are gaining traction across Canada, where roughly 7.6 million people will suffer from chronic pain during their lifespan.
In 2019, Ottawa created a task force that looked at the state of chronic pain, finding it has a “tremendous impact” on the economy, with direct and indirect costs that totalled nearly $40.3 billion that year.
The task force’s work resulted in an action plan, where 150 recommendations were made and six overarching goals were outlined to improve care and support. Those included having equitable and consistent access to care and legitimizing and destigmatizing chronic pain, which can be brought on by everything from injury to disease.
It also recommended providing resources to further develop and scale peer-support initiatives across Canada.
Maria Hudspith, co-chair of the task force and the executive director of the advocacy groups Pain Canada and Pain BC, said peer support is a crucial piece of the puzzle in someone’s pain management.
“When people are living with pain, they don’t just need a doctor — they need coaching, they need peer support and to feel understood by other people living with the same condition,” said Hudspith.
“If you think about any experience in your own life and then you think about the value of somebody who shares that experience, whether it’s losing someone and grieving, whether it’s getting fired … you just think about when you connect with somebody who gets that, it’s so important.”
Pain Canada tracks the progress of the action plan on its website. Only one of the report’s recommendations has been completed as of June, but as many as 120 recommendations are in progress. The recommendation related to peer support is listed as ongoing.
Hudspith said British Columbia has the most robust peer support network, with 14 biweekly groups. But groups are also getting off the ground in Alberta and Quebec, as well as the Atlantic region.
Virginia McIntyre, 61, has been living with chronic pain for more than a decade after a workplace injury prompted her to need shoulder surgery, leaving her with pain in her upper back. The pain eventually forced her to temporarily leave her career in diagnostic imaging and prevented her from doing activities she enjoyed like running marathons and playing soccer.
Her mental health suffered. That is, until she learned how to manage her pain after seeing a pain specialist and going through Nova Scotia Health’s self-management program.
She wanted to help others, so she started the People in Pain Network in 2017, which offers virtual peer-support meetings and in-person meetings in the Annapolis Valley and Sydney, with plans to expand into Newfoundland and Labrador.
McIntyre said managing pain has a multidisciplinary approach that involves an array of professionals like primary care providers, psychologists and social workers. But it can take years of waiting to get that kind of holistic care, all while the person is still in pain.
“We build connections. We decrease that isolation,” said McIntyre in an interview from her home in Coldbrook, N.S., where the walls are decorated with photos of her two daughters and toys for grandchildren are stacked in the corner of the living room.
“For some people, they say this is the only time they get out of the house or they join us virtually to be in a space that they feel heard and call it their home base.”
McIntyre, who was able to return to her job after three years, said her network has partnered with other organizations like Pain BC and Pain Canada to develop a curriculum and train facilitators, so that people wanting to set up support groups in their community can do so based on best practices.
Nova Scotia Health Minister Michelle Thompson declined a request for an interview.
In a statement, Nova Scotia Health said it offers a virtual group-based educational program for people living with chronic pain that does not require a referral and covers topics to self-manage pain such as body awareness, mindful movement and goal setting.
Asked what the current staffing levels and wait times are at the province’s 10 health-care sites with chronic pain services, spokesperson Jennifer Lewandowski said wait times vary from clinic to clinic, but would not provide specifics.
“As with other areas of care, we have ongoing efforts occurring to improve access to care and better co-ordinate how we manage and deliver care to patients with these unique and complex needs,” said Lewandowski.
Here’s what it’s like to live with chronic pain
Bruce Wentzell attended the very first meeting of the South Shore Chronic Pain Support Community last September and liked what he heard, so he became a board member.
Wentzell was 67 years old and working as a transit driver when his foot became caught in the hydraulic arm of a bus, causing him to fall and unknowingly rupturing his spleen, leading to months of internal bleeding that caused permanent nerve damage in his legs and gut.
Now 72, Wentzell said his family supported him as he navigated his new way of living, but knows not everyone has that kind of help. That’s why this group is so important, he said.
“I think that people sometimes, in the system that we’re in, think that it’s the government’s job to fix them, to take care of them. But it’s your job too,” said Wentzell, his forearm crutches resting on the table beside him.
“There are ways that you have to act to try and get help. And if your problem has got you so far down that you’re just mad at everything, you have to change your attitude a little bit so that people can help you.”
MacMillan said while Wentzell’s words ring true, politicians do have a role to play and more government resources should be devoted to chronic pain clinics in the province. She vows to fight for that “to my dying day.”
“I want the people that are making the decisions to come down here and hear the stories,” said MacMillan, pausing to compose herself.
“Every person I meet makes me more and more determined.”
