For Virginia McIntyre, sharing her experience living with chronic pain was an important step in overcoming stigma and supporting others on their pain journey. We sat down with Virginia to talk about the challenges of living with chronic pain, the importance of peer support, and the role of patient-oriented research in improving care for people living with chronic pain.
By way of introduction, can you tell us how you got involved in patient-oriented research?
First, I’d like to say thank you for having me and I am thrilled to share a bit about me. When I got involved, I wasn’t going down the research road but, as I learned how research can improve our health care system, I knew I had something to offer. I felt I had to get involved as a Patient Partner because of the extremely challenging time I had with our health care system. After a shoulder surgery, I unexpectedly developed lasting pain, chronic pain. Trying to find someone to help me led to years of being mistreated, misunderstood, and dismissed. This left me distressed, absent from work, and alone with severe pain. It was horrific experience and I was shocked at the lack of knowledge about chronic pain in our health care system. Finally, a referral to the QEII Pain Clinic changed things for me. For a long time, I didn't share my experience because there’s a stigma around chronic pain. After several years, I started by sharing that I live with pain and drawing attention to the lack of resources and the impact that it has on patients to not have access to quality care in a timely manner.
Findings ways to talk about pain is important. How do you describe chronic pain and the challenges of living with it?
Well, chronic pain impacts every one differently. Initially, mine was like knives stabbing in my upper back and whenever my shirt moved over my back it was like rubbing a razor blade across it. I couldn't live like this and the impact this was having on my family was heart wrenching.
I have to say, I dislike describing my pain using a pain scale, when you rate your pain from one to ten. I prefer to describe my pain based on how well I can function on a particular day. Some days the stabbing is so severe that I can't function. The pain can rob me of my energy, strength and ability to think, leaving me with no motivation to get off the couch—but I don't have many of those days anymore.
It’s important to share my story because, unfortunately, there’s a real lack of understanding from the public and, I’m afraid to say, the health care providers about what chronic pain is and what it is to live with chronic pain. We grow up knowing about acute pain but not chronic pain. I’d never heard about chronic pain until I developed it. I thought that you take a pill or put ice on it and it will go away—like with an ache, but medications and treatments only reduce chronic pain, slightly.
My biggest challenge was obtaining quality care, then learning to manage my pain. I had to learn about pain self-management, pain science, pacing, develop a self-management pain tool kit, and form a team of health care professionals to assist me. Making these changes to my daily life reduces my pain—it just hovers in the background and I have now returned to being a valuable member of my community and able to be a Patient Partner. COVID created some challenges—the stress and loss of resources—but within a few months I was able to lower my pain again. This was a reminder that I am resilient.
I happen to know that you’ve taken an active role in creating spaces to share experiences and resources. Can you tell us a bit about peer support groups and how they complement the treatment and therapies that patients are receiving from health care providers?
I think you said a key thing: peer support complements the treatments from health care providers—it does not replace them. I founded the Annapolis Valley Pain Support Group, a peer support group that offers a balance between education and support. It’s about sharing our experiences together—how we’re doing today, how we’re managing our pain, and our small victories. We all have a common lived experience, we live with pain. It is a peer-led group. Health care providers do not run the group, although they do present, along with our community members. As a facilitator, my role is to create a safe space where we can share freely and a space where we are heard.
We’ve come a long way with peer support group development. I know the need is there. Our group started out with five people in 2017, and we have 18-20 members attend regularly (although it’s a little different with COVID) and more than 50 people on our mailing list. We’ve expanded to a group in Liverpool, are developing one in PEI, and we collaborate with a group in Halifax, Young Adult Pain, and others in Ontario.
Still, I wonder why peer support is underutilized. I had the privilege to present on the role of pain peer support at the International Association for the Study of Pain (IASP) virtual series in October 2020. The lived experience panel was comprised of myself and two ladies who are involved with peer support in Australia. This was one of my greatest privileges to educate health care providers and patients nationally on the value of peer-led support. I also lead other initiatives, such as the development of training sessions for our facilitators, and a gentle fitness program for people living with pain.
That’s amazing! So you’re finding these opportunities popping up in different places. Can you tell us more about the gentle fitness program?
We’re running a gentle fitness program that grew out of conversation I had with Dr. Jonathan Fowles, a kinesiology professor at Acadia University, at a BRIC NS Primary Health Care Research Day. His thought provoking questions caught my interest, so I approached him afterwards and said, “I want to see a gentle fitness program for people with pain. Can you help me do this?” We put in for a community wellness grant and a kinesiology student at Acadia stepped up to do the research. She did the research, developed the program and is now our instructor. This project was patient-led, by myself and my co-facilitator. The final touches to the program was to bring a focus group of Patient Partners together to provide lived experience input. We have successfully implemented a community health and wellness program through research and community partners.
So, sharing your experience led to being involved in patient-oriented research?
Yes, I realized that one of the best ways to make meaningful change is through research. How are we going to make changes that will directly impact patients in a positive way if we don’t identify the gaps? The only way that researchers are going to be able to do this is by fully engaging Patient Partners, the people who are right there at the front. They know what really happens. These conversations are what’s going to bring light what is really happening, how it impacts us, and therefore bring our health care system a step forward and make it better for those of us who live with chronic illness.
It’s also about getting that knowledge out, referred to as knowledge translation. Patients want to be informed and have evidence-based knowledge in their hands, in terms they can understand. Many of us fly by the seat of our pants with chronic pain because there’s so many gaps and lack of knowledge. This is a valuable role for our researchers—bridging gaps and sharing findings with us.
What advice would you give to researchers on how to engage with patients?
I’ve worked with several groups and some are better at it than others. Researchers have to know that this is not our world, this is foreign territory for most. We will have questions, so be patient and welcome our questions and our perspectives, and give us time to learn and share. As a Patient Partner, I may not know how you store documents or how to leave comments, add to papers, so take a few minutes and go through it with us. It is your task to make Patient Partners comfortable with sharing, and lose the acronyms! Another concern is compensation for time and Patient Partners never should have to pay out of their own pockets to participate, this includes parking. I have attended a committee and was never offered parking or mileage reimbursement, we should not have to ask.
Also, involve Patient Partners from the beginning, include them in the grant writing process, study design. It doesn’t have to be the same patient that will be your Patient Partner in later stages. Remember that equal partnership includes getting together when everybody can meet, including your Patient Partners. Often research is not our job, we have other responsibilities and we have families. So, I think that you need to be mindful and be respectful of our time. I think that’s something that’s often missed. As patients, we can’t speak for every patient; you can speak from our experience. So, having a couple of patients is a good idea, so have more than one perspective and this can assist Patient Partners in feeling more comfortable. Finally, let Patient Partners know that whatever they say, you won’t be offended.
Lots of good suggestions for the researchers. Flipping the question around, what advice would you give to someone who’s thinking about becoming a Patient Partner?
If they’re really interested and it’s new to them, reach out to organizations, like the MSSU, that know how to do it and do it well. They can help make connections, find mentors or meet other Patient Partners to talk to. So reach out. Be honest about your opinions, but be respectful and remember: your voice is very important. Don’t change your experience—it’s your experience that the researchers are looking for. It is our honesty and sharing our stories that are we going to improve things, help identify what went wrong, what went right and help make meaningful change. So be honest with your experience and don't hesitate to ask questions, say, I don’t understand that concept or that acronym— and don't be afraid to disagree. If you’re with a good team, that’s not going to be a problem. I think you should look at this as a learning experience too. I’ve learned a lot. Most importantly, your voice is important and be yourself.
Is there anything else you want us to know?
I think that Patient Partners and researchers need to continue sitting around the same table. It is going to make great changes, and research is the backbone. Continue to get the information out to the patients in any way you possibly can. We’re doing things now that we weren’t doing years ago. We’re including patients and I think we’re improving on this, by leaps and bounds. My last plug: we need more research on pain and the value of pain peer support.
Virginia McIntyre is the founder and facilitator of the Annapolis Valley Pain Support Group, the Chair of the Canadian Osteoporosis Patient Network, and a Board Member with People in Pain, an organization that supports people living with pain through peer support. Virginia is also an active MSSU Patient Partner. She has extensive experience in peer support and advocating locally and nationally for those living with pain to have access to the tools they need to live well. She is committed to helping others who live with pain. Virginia is also an avid runner and frequent tweeter.