Janice Macmillan remembers driving home from work trying to breathe through an unbearable chest pain, everything while contemplating this heavy question: “What is the point of living if this is my life?”
Macmillan has suffered chronic pain for more than 45 years. Once he felt desperate, alone and invalidated, until he found a new purpose.
The 62 -year -old woman has turned the mission of her life to help people with chronic pain in a province where people wait years to see specialists and where pain clinics have little personal.
“I was destined to be here and I am fighting hard so that each person on the southern coast, even new Scotland, was not far behind,” said Macmillan, who is originally from Ontario but moved to Liverpool, NS, in 2021.
Macmillan’s experience is not unique. More than 20 percent of Canadians live with chronic pain, an invisible condition that defenders say that it is still widely misunderstood by the public but by doctors and nurses.
After experiencing barriers to the first -hand medical care system, Macmillan began a base support group for people with chronic pain on the southern coast of the province, as well as similar groups are emerging in other areas of the province and throughout Canada.
The peer support groups for people with chronic pain are beginning to emerge in Canada, since defenders work to break the stigma surrounding the invisible condition. Aly Thomson of CBC has the story.
Macmillan was diagnosed with fibromyalgia, a condition that causes generalized pain in muscles and soft tissues, at age 20. At that time, there were no treatments, it was often fired by health professionals, since the condition was not yet widely recognized.
He was denied medications and had no information on how to deal with his affliction of a lifetime, which, to this day, can be weakening.
Then she suffered.
“I don’t think people understand what chronic pain can do. It is as if someone has a chisel and chisel a part of you little by little,” said Macmillan, who was a UCI nurse before her condition forced her to stop that line of work.
“My family did not believe me and the world did not believe me. They treated me as if I were an idiot or was not mentally together.”
His pain worsened by a head injury as a result of a fall in October 2015 and being beaten by a truck in January 2016. These accidents caused brain damage and impacted their short -term memory.
‘The silent screams’
Four years ago, he decided to leave his life behind in Ontario and move to the maritime province where his ancestors came.
He also left his pain specialist behind. Unable to access one in a timely manner in Nueva Scotia and discover that Yarmouth’s regional hospital did not have a pain with staff, he had an epiphany.
“A long time ago, I said that I wanted something good to come out of all the pain, all silent screams and all tears,” he said. “I had to go through all that, so I understood what other people have happened.”
He decided to organize a support group for people with chronic pain, financing the starting costs with their own savings.
The South Shore Chronic Pain Support Community, which was recently incorporated as a non -profit organization, celebrates monthly meetings in which people join in an empathetic environment to share experiences and learn coping strategies. They also invite guest speakers, such as acupuncturists, to offer advice on pain management.
The peer support groups for people suffering from chronic pain are gaining ground throughout Canada, where approximately 7.6 million people will suffer chronic pain during their useful life.
In 2019, Ottawa created a working group that analyzed the state of chronic pain, discovering that it has a “tremendous impact” on the economy, with direct and indirect costs that totaled almost $ 40.3 billion that year.
The work of the working group resulted in an action plan, where 150 recommendations were made and six general objectives were described to improve care and support. Those that included having equitable and consistent access to the care and legitimation and dismissal of chronic pain, which can be caused by everything from injuries to diseases.
He also recommended providing resources to develop and climb support initiatives in all of Canada.
Maria Hudspith, co -president of the task force and executive director of the Pain Canada and Pain BC defense groups, said that the support of pairs is a crucial piece of the puzzle in the handling of someone’s pain.
“When people live with pain, they not only need a doctor: they need training, they need peer support and to feel understood by other people who live with the same condition,” said Hudspith.
“If you think about any experience in your own life and then think about the value of someone who shares that experience, whether it loses someone and afflicting each other, whether he is being fired … you only think about when you connect to someone who understands it, it is very important.”
Pain Canada traces the progress of the action plan on its website. Only one of the recommendations of the report has been completed from June, but up to 120 recommendations are in progress. The recommendation related to pairs support is listed as continuous.
Hudspith said British Columbia has the most robust peer support network, with 14 biweekly groups. But the groups are also taking off in Alberta and Quebec, as well as in the Atlantic region.
Virginia McIntyre, 61, has been living with chronic pain for more than a decade after an injury in the workplace led her to need shoulder surgery, leaving her with pain in the upper back. The pain finally forced her to temporarily leave her career in diagnostic images and prevented her from doing activities that she enjoyed how to run marathons and play football.
His mental health suffered. That is, until he learned to handle his pain after seeing a pain specialist and going through the New Scotland Health self -management program.
I wanted to help others, so the People in Pain network began in 2017, which offers virtual support meetings between peers and meetings in person in the Annapolis and Sydney Valley, with plans to expand to Newfoundland and Labrador.
McIntyre said that pain management has a multidisciplinary approach that involves a variety of professionals such as primary care suppliers, psychologists and social workers. But it can have been waiting for years to obtain that kind of holistic care, everything while the person still has pain.
“We build connections. We decrease that isolation,” McIntyre said in an interview from his home in Coldbrook, NS, where the walls are decorated with photos of his two daughters and toys for grandchildren are stacked in the corner of the living room.
“For some people, they say that this is the only time they leave the house or join us practically to be in a space that they feel heard and call it their base of operations.”
McIntyre, who could return to work after three years, said that his network has been associated with other organizations such as Pain BC and Pain Canada to develop a study plan and trains facilitators, so that people who wish to establish support groups in their community can do so based on best practices.
Waiting times of the pain clinic
New Scotland Minister of Health, Michelle Thompson, rejected a request for an interview.
In a statement, Nueva Scotia Health said that it offers a virtual educational program based on groups for people living with chronic pain that does not require a reference and covers issues for self -managed pain, such as body consciousness, conscious movement and the establishment of objectives.
When asked what are the current levels of personnel and waiting times in the 10 medical attention sites of the province with chronic pain services, spokeswoman Jennifer Lewandowski said that waiting times vary from the clinic to the clinic, but would not provide details.
“As with other areas of care, we have continuous efforts to improve access to care and better coordinate how we handle and provide care for patients with these unique and complex needs,” said Lewandowski.
Living with chronic pain can be weakening. This is how it has been for three Nová scotians.
Bruce Wentzell attended the first meeting of the South Shore Chronic Pain Support community last September and liked what he heard, so he became a member of the Board.
Wentzell was 67 years old and worked as a transit driver when his foot was trapped in the hydraulic arm of a bus, which made him fall and breaking without knowing his spleen, which led to months of internal bleeding that caused permanent nerve damage to the legs and intestine.
Now 72, Wentzell said his family supported him while sailing for his new way of life, but he knows that not everyone has that kind of help. That is why this group is so important, he said.
“I think people sometimes, in the system in which we are, think it is the government’s work to fix them, take care of them. But it is also their work,” said Wentzell, their forearm crutches that rest on the table by their side.
“There are ways in which you have to act to try to get help. And if your problem has taken you so far that you are angry with everything, you have to change your attitude a little so that people can help you.”
Macmillan said that while Wentzell’s words are true, politicians have a role to play and that more government resources should devote themselves to chronic pain clinics in the province. She promises to fight for that “until my dying day.”
“I want people who make decisions come here and listen to the stories,” Macmillan said, stopping to compose.
“Every person I know makes me more and more determined.”
