Meet Virginia McIntyre over the back fence and she will not tell you she lives with pain.

She will tell you she is passionate about connecting people. She will tell you about her grandchildren, and that she is lucky to be able to keep up with them. If the conversation turns that way, or if you say you have heard her podcast, she will get to the pain. Otherwise it stays where she keeps it.

“It’s not who I am,” she said. “And you get that blank look on their face. The disbelief. It just numbs the conversation.”

Virginia is the President and Executive Director of the People in Pain Network (PIPN), a peer-support organization based in Nova Scotia whose groups offer connections and pain self-management education, drawing people from across Canada and, increasingly, from the United States. She chairs the person with lived experience (PWLE) committee of the Canadian Pain Society. She sits on Pain Canada’s National Advisory Committee. She co-hosts a podcast, Action on Pain. She has been at policy tables, research tables, and on the evening news talking about access to care.

None of that is how she introduces herself.

We talked on Labor Day, a holiday in both our countries. She was in Nova Scotia. I was in Los Angeles. What follows is her story as she told it to me, with a few places where she and I found we had walked the same road.

A mother ahead of her time

Virginia describes her childhood as complex. Her parents divorced in the 1970s, a time when her strong Catholic community carried a heavy social stigma against separated families. Her mother was five foot two and barely a hundred pounds. She was also a registered nurse, which meant she could raise three daughters on her own without turning to social assistance programs. Grandparents helped. When she remarried, a stepbrother named Mike joined the family, and from then on it was the four of them.

Her mother’s instruction to her daughters was short. You are a woman and you can do whatever you want to do. You will get a career. You will be able to take care of yourself. You will be able to stand up for yourself.

This was extended to Mike as she implemented structure and love into his life. He went into the military. Until the day he died, three years ago, he told Virginia that their mother was the reason he went the direction he did.

Tragedy struck when Virginia was twenty and lost her mother, the woman she was named after.

“She made us who we are,” Virginia said. “We’re all strong-willed.”

She was the social middle sister, the one who could not sit still. Schoolwork was not the point until it was. Four years in the Canadian Reserves helped fund her way through university, an experience she credits with shaping her into an adult.

I told her my mother was a nurse too, and that I owe her the same debt. Some of the similarities between us I did not know about until that conversation.

Head down

Virginia worked in health care. Her injury came at work in 2008 and led to shoulder surgery in 2009. Then came the cycle that anyone reading this will recognize. Physiotherapy. Occupational therapy. Appointment after appointment, and nobody who believed her. Because it was a workplace injury she was under workplace insurance, and the questions that come with it. Do you love your job? Do you want to work? Her manager was a bully. Quality care, when she finally got it, was a three-hour round trip added to her day when pain was the worst.

“If it didn’t take so long to get into care, that wouldn’t have happened,” she said. If someone had looked at her three months after surgery and asked why this odd pain was still there, she believes the years that followed would have gone differently.

She got back to work about three years later. Almost no one does, after that long. And then she did what she had learned to do. She kept her head down. She did her job. She told no one.

Sixty seconds

In 2017 the Canadian Pain Society held its annual conference in Halifax, close to home. A scholarship for people with pain covered her registration, so she went. On the last day there was a session on sharing your story. Everyone was paired off. Virginia was matched with a young woman in her early twenties.

Virginia told her everything. The dismissals. The mistreatment. The whole system that did not believe her. Then the young woman had sixty seconds to say back what she had heard.

“I want to be like Virginia,” she said. “She is a professional woman who’s beat all this and made it.”

Virginia sat there. Are you talking about me?

“But she was right,” Virginia told me. “I made it.”

It was the first time anyone had said it out loud, including her.

She had lost her confidence somewhere in the years of being told she was no good anymore. That afternoon she got some of it back. And she noticed something else. It was 2017. Her injury was 2008. The people around her were telling the same story she had just told. Years to get care. Not believed. Lives coming apart in the meantime.

“I just had this passion,” she said. “I need to do something. What can I do?”

Doing something

The first something was small. A local physiotherapy conference was coming up, and she asked if she could give the welcome. The organizer said sure, without understanding why. Many of the physios in the room knew her from the hospital. Her own physiotherapist was there. Virginia stood up, said she lived with pain, and thanked them for the work they do.

People looked at her. It was the first time she had said it in public.

Then she went to the pain clinic in her area and asked what they could do together. The answer was peer support, and the first PIPN group opened. She joined a small patient and family engagement group that worked on something most people never think about: the receptionist. How the person at the front desk speaks to you shapes the visit before a clinician walks in. They built training for it.

She wrote her story down and sent it to Dr. Christine Chambers, the scientific director of Solutions for Kids in Pain (SKIP), who reviewed it and has backed her ever since. Roundtables on policy in Nova Scotia followed. When the Canadian Pain Task Force came to town, Virginia spoke. Research steering committees. A Strategy for Patient-Oriented Research (SPOR) grant, with a professor at Memorial University, to study peer support. Then Dr. John Pereira, President of the Canadian Pain Society at the time, asked her to lead the creation of the society’s first PWLE committee, and handed her the reins.

Two years later, at a dinner, she asked Dr. Pereira a question. Why me? You barely knew me.

He said she had been showing up. At a conference, someone had to be there early in the morning for the communications committee, and she was there. “It’s not about what someone knows,” he told her. “It’s those who are able to put the work in and show up.”

“I showed up,” she said.

She does not think everyone has to live the way she and I do, hands in a dozen pots. “If people just took one pot,” she said, “they’d make a difference.”

What a room full of believers does

Ask Virginia what she most wanted to add before we hung up, and it was peer support. Not as a nice-to-have. As care.

PIPN groups run on a balance of wellness and education. Through a partnership with Pain Canada, its facilitators receive five weeks of training, one day a week, delivered through the Canadian Mental Health Association. PIPN peer facilitators are provided with a manual with 34 evidence-based educational topics and slides to match. Facilitators meet for debriefs to discuss what is working, what is not. Twice PIPN has raised money to bring them together for an in-person workshop.

Virginia was the one who pushed for that, years ago, at the national meetings. She had started with nothing. “I had to read, read, and do it all by myself.” Other networks were losing facilitators. Hers were staying. She thinks it is because they feel competent, and because they know they are appreciated.

And they do not stop at the group. Her facilitators go on to help with research. They speak to policymakers in the province. Once a year PIPN goes into the university to talk to physiotherapy students, and it is the facilitators who tell their stories.

“They’re empowered,” she said. “They can sit at the table as educators.”

Inside the groups, she frequently witnesses a powerful breakthrough. A newcomer will sit down with peers who share their exact experience and confess that it is the first time they have ever felt believed.

“They have the answers in the group,” she said. “We sit back and facilitate the discussion. They support each other. It’s magic.”

I run my group the same way, and have for twenty-seven years. We agreed it might be an East Coast thing. She is from the Atlantic coast, and I learned from people who were.

What she would change

Virginia is a person with pain first, but she has sat on enough research teams to know what the other chair looks like. Here is what she told me, for anyone building a study or a committee.

Believe it, or don’t bother. She wonders whether many teams believe the lived experience voice changes anything. They know they need a partner to get the grant, so they bring one in at the last minute. “They need to be members, right from the get-go,” she said. Co-designing the questions. Reading the grant. Deciding how the study will reach other people with pain.

Pay the way. Labs have money to send researchers to conferences. Put the partner in the knowledge mobilization budget and take them too.

Stop asking for in-kind. She has been asked, as the head of a volunteer network, what PIPN will contribute in kind. She has sat at a table for a small grant where nobody was paid, she was told, because the money had to go to the research assistant. Everyone else at that table was on salary. “You’re not sitting home doing this,” she said. “You are getting paid.” She will still do some work for free when a bigger grant is coming. She wants the difference named.

Go where the people are. If the population you are studying is eighty percent one community and twenty percent another, the table should look like that. “The excuse is, they’re not applying,” she said. “Well, go out to the community. Go to the church. Go sit around.” One group she works with uses sharing circles, a practice she has learned from some Indigenous partners. She wants to know why more teams don’t take that time to get to know each other before the work starts.

Say what changed. This one came to her in the middle of our conversation. Researchers and policymakers rarely close a project by naming where the direction changed because of a partner. “Acknowledge it,” she said. At the end of the paper. In the report. This pivoted because of a perspective we heard from our patient partners. She thinks that sentence, repeated enough, would do more to convince the doubters than any argument from us.

Finish the job. Plain-language summaries. Infographics. Short videos. She feels many people who are not in research do not care about the methods. They want to know what it means for them. She would make public-facing knowledge mobilization its own required step in a grant, separate from publishing and speaking.

I told her about my first clinical trial, where the team put out a newsletter that introduced the researchers and the community board to each other, and where a Patient-Centered Outcomes Research Institute (PCORI) requirement was the only reason the engagement work made it into the record at all. She nodded through all of it.

Where it goes from here

I asked her where patient engagement in research will be in five or ten years. She did not dress it up.

Slow. Funders will keep pushing partners onto teams, and that will help. Research cuts in both countries will hurt, because partners cost money to support. The people writing and speaking about engagement, herself included, may be talking to the choir.

What will move it, she thinks, is a small handful of researchers who believe in it, and people with pain who keep showing up. Canada now has Pain Connect, a national platform from the Chronic Pain Network that matches people with pain to research and policy projects looking for partners. She is connecting me with the people who run it.

“And we need to mentor the young ones,” she said.

Our health systems are different. “But the struggles are the same,” she said, “and the hurt is the same, and the dismissals.” Researchers cross the border all the time. Advocates mostly do not. She wants to change that, one podcast guest and one committee at a time.

When I asked if there was anything else, she gave me one more line, and it is the one I want to leave you with.

“Their voices are important. Speak up. Don’t let it stop you. Share your stories.”

Virginia showed up. If you have been keeping your head down, this is your invitation. PIPN’s virtual groups welcome people from the United States. If you would rather start closer to home, write to us at editorpwlevoices@gmail.com and we will help you find a room where you will be believed.

— Tom