THE last day Heather Divine worked as a nurse was May 31, 1991.
She even recalls the exact time she stepped down from her post: 3: 15 p.m.
"It's only the last couple of years that I haven't actually got teary-eyed when I say that. Because it was what I thought made me special and important and I loved it and I was good at it and the last thing I wanted to do was leave," says the former operating and recovery room nurse.
Divine is among the estimated one in five people who experience some form of chronic pain. In her case, it's 24/7 neuropathic pain from the waist down, which she began to experience following four surgeries over the course of a year in 1988-1989 related to cyst removal.
January 1990 is the last time she's been pain-free.
"Unless you experience it for yourself, you can't actually fathom that pain can be so invasive," she says.
"I raged for a year or two about it because I was young, I was 37 and my career was over. . . . It took me a couple of years to go through the acceptance, the normal emotions. I took what I was and I had a funeral. I wrote down all the things that were my losses (and) I burnt them in a little urn," she adds.
From the ashes, Divine picked up the essence of "what made me, me" and finally began to accept her new reality. Wanting to regain her happiness and to be her best self for her family, the mother of, then, two young children realized she needed to "start building Plan B."
For Divine, now 60 and a current North Vancouver resident, that's meant figuring out how to manage her own chronic pain and devoting 23 years to helping others do the same. Believing strongly in the power of chronic pain self-management and peer support, she has launched a number of community-based support groups, and held administrative roles in various pain associations, both provincial and national. And, she has recently launched the People in Pain Network, a non-profit organization dedicated to connecting people living in pain and their families with education, support and solutions.
Divine is also among the local members of the pain community banding together to give hope, advocate for and implement changes to better serve those affected by chronic pain, aided by the public's changing perception of the condition.
"Clinically, chronic pain is being recognized more and more as an actual condition or a disease unto itself. It's not just someone with arthritis or someone with fibromyalgia or someone with a bad back. The actual pain and the ongoing chronicity of it becomes more of a central nervous system problem and it's being seen as a unique disease entity itself and that's a little bit different than how it has been seen in the past," says Dr. Stephen Wiseman, physician lead of the St. Paul's Hospital Complex Pain Centre.
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A common Naomi Wolf quotation shared by those working in the field of chronic pain is: "Pain is real when you get other people to believe in it. If no one believes in it but you, your pain is madness or hysteria."
Dr. Pam Squire, a North Vancouver resident who currently practises in Vancouver and has focused on pain management since 1998 when she completed a residency in pain medicine in Australia, cites the passage in an effort to illustrate a common challenge faced by people living in pain.
"Not only do patients not understand the disease of chronic pain, but physicians don't either," she says.
In terms of duration, chronic pain can be defined as pain that has been there for longer than three months. However, the reality of the condition is much more complex.
Squire draws an analogy. "Your whole pain-sensing system is like a computer," she says. The hardware component includes nerves, the spinal cord and your brain, but the system is run by a software program. Like computers, there can be problems with the hardware or the software. A migraine is an example of a software abnormality. During a migraine, the hardware (the brain structure) will appear normal if scanned by an MRI or CT scan. Arthritis is an example of a hardware problem but even when X-rays or CT scans demonstrate arthritis, it's common for there to be poor correlation between how much arthritis is present in a joint and how painful it is. Pain experts understand that this discordance can be explained by a software problem (seeing a patient's pain-sensing system "over-read" the pain message), by a mood disorder, by the meaning of the pain and by other psychosocial problems.
Depression can make people's pain feel more intense as it can potentially stop them from feeling hopeful and they can lose motivation to do the work of recovery, which adds up to more pain, she says.
Diagnoses related to chronic pain are therefore difficult.
"Complex pain is a biopsychosocial issue as opposed to acute pain," says Squire. "So that means we're never just assessing the painful part, we're assessing somebody's mood, usually their sleep. It has cognitive effects, so they're quite complicated assessments."
Further challenging is there's actually no such thing as a chronic pain specialist, says Wiseman.
"There's no one set residency or training program or exam to take. Doctors who work in the area of chronic pain come from a variety of different specialist backgrounds. . . . It's people that have to go beyond their basic training and move into this area," he says.
Squire is an example, having continued to seek out international learning opportunities, and her practice is overloaded with patient requests.
It's hoped that in the coming years, chronic pain specialists will begin to appear across the country as the field has recently been recognized as an official sub-specialty by the Royal College of Physicians and Surgeons of Canada. A brief pain specialty training program will be unveiled across Canada next year and both Squire and Wiseman are on a committee putting together a Royal College Pain Specialty Program for the University of British Columbia. The first chronic pain specialist is expected to come out of the new programs in 2015.
In addition, Squire and Divine are on a committee with a number of stakeholders at the table, including the B.C. Medical Association and Pain B.C. Society, working to develop a new training module for B.C. doctors related to better treating chronic pain patients with the first educational sessions planned for late spring and fall.
The committee has also advocated for a new chronic-pain billing code for physicians, which will encourage more physicians to take on chronic pain patients as their overhead will now be covered, says Squire.
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When Divine had to quit nursing in 1991, her doctor at the time told her she wanted her to do two things. First, she encouraged her to visit with another chronic pain patient who had totally given up and was lying in bed.
"I did that and that was my first support group meeting ever, because that's what I recognize it as being. It was so profoundly helpful for both of us," she says.
Divine and the woman went on to found and co-lead a chronic pain support group in Edmonton, Alta., where she had been living at the time. The group is still running today as part of the Chronic Pain Association of Canada.
The second thing Divine's doctor asked her to do was to speak to other nurses at a palliative care conference about what it was like to live with pain. Seeing the tears in the eyes of her peers, Divine's new calling became clear. "I had that overwhelming sense that this is where the meaning and purpose will come back into my life. When I do these things I will get that back. That was the turning point for me," she says.
Divine was involved with the Chronic Pain Association of Canada for 18 years as both a board member and president. She was a founding board member of the Pain B.C. Society and went on to found the People in Pain Network in October 2011 and serves as its CEO.
"Being part of the whole Canadian pain community for all these years, I could see the gaps, which is why I started People in Pain Network," she says.
For Divine, those gaps include: patients' inability to get help due to lack of doctors and wait lists; financial strain; isolation; lack of education; lack of information regarding how to live differently; and lack of knowledge of available resources, like the University of Victoria's six-week Chronic Pain Self-Management program.
The basis of the network are its support groups, led by trained leaders. The organization will have 18 groups up and running across the province by the end of April, including one in Lynn Valley that was launched in January. The North Vancouver group meets the fourth Wednesday of every month from 6 to 8 p.m. at the Lynn Valley Main Library. Divine serves as co-leader.
A major focus of meetings is the Pain ToolKit self-management program, created in the United Kingdom, and used widely in Europe, Australia and New Zealand.
The network is working on launching live online support group meetings as well as education nights for family members. "We really have to provide a place for family members to be angry and to be frustrated and to talk with others and also get education," says Divine.
The network has just received funding to expand to Alberta and Divine's ultimate goal is to eventually go national.
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A major resource accessible to North Shore residents, by referral from their doctor, is the St. Paul's Hospital Complex Pain Centre. Operated by Providence Health Care, it serves those mainly in the Vancouver Coastal catchment. Historically, St. Paul's was the only publicly funded pain clinic in the province, but more have been developing in recent years, including the Chronic Pain Clinic at the Jim Pattison Outpatient Care and Surgery Centre in Surrey.
St. Paul's clinic sees pain patients primarily on an outpatient basis. Depending on the patient's needs, they'll be seen once to do a consultation or become involved in some of the clinic's multi-disciplinary treatments, like occupational or physio therapy, or psychology.
The clinic is the only ones in Western Canada offering a specialized service for the most complex types of clinical problems as well as four inpatient beds. The beds also service patients accessing the neuromodulation program, receiving spinal cord stimulators, pain medication pumps and undergoing complex neurosurgical-type pain procedures. St. Paul's does the majority of those in the province.
"That is a very, very tiny component of our program. We literally will do 10 or 15 such procedures per year and it's very, very difficult to get one because of the clinical criteria and because of the very specific situations in which it's appropriate and that we're supported to do it," says Wiseman.
A rough estimate is that the St. Paul's clinic serves a few thousand people per year, however the current wait list for eligible patients is between a year and 18 months, though it's been as high as two to three years in the past.
"It definitely has been two to three years and that is part of the reason why we are currently going through a major restructuring. . . . We have basically tried to be all things to all people in the past because there really haven't been a lot of alternatives and that has allowed us to do frankly really good work with a relatively small number of patients. But we ended up being spread way too thin to really cope the way we wanted to with the huge number of people that were being referred to us. And a three-year wait list is frankly inappropriate," says Wiseman.
"We're trying our best to restructure in the face of overwhelming demand so that we can best meet the needs of the public and of their referring physicians," he adds.
They've been helping with the development of pain programs and clinics in other communities and are looking at revamping their program to allow people to come in, work with staff for a specific period of time and then be effectively discharged back to their family doctors or alternative community resources.
"We're looking to really tighten that up so we can actually work harder for people, make better changes for people and then have them move on to the next phase of their treatment so that we can continue to see more people and not be bogged down with this wait list," says Wiseman.
They're expecting to have their revamped program up and running by the end of 2013 or else very early 2014.
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Thanks to the efforts of those involved in the Canadian pain community, many changes are afoot. But more can still be done to better serve patients.
Squire references Lions Gate Hospital's HOpe Centre for mental health and addictions as a good model.
"I think what the North Shore needs is that kind of resource for chronic pain, because we have exactly the same issues that mental health has in terms of we really need interdisciplinary care that's co-located in a clinic," she says, adding it would be great see a private donor step forward, like with the HOpe Centre and the hospital's Jim Pattison Emergency Centre, to make it possible.
Wiseman likewise envisions the potential for future change.
"Personally I think the pain community could very much benefit from something substantial, whether that be through a private donor or through a major gesture on behalf of the government. I think the reason for that is several-fold. Chronic pain, traditionally, has never belonged anywhere. No one group of clinicians or researchers takes ownership of it. By definition, it draws from a lot of different areas in medicine. That makes it not as a co-ordinated whole as it could be. It has grown in B.C. basically through the very, very hard work of a small number of dedicated people. . . . We're at this point now where there's a lot of little green shoots coming, but to co-ordinate those and to have kind of an overarching kind of guidance is still lacking, and I think we definitely could benefit from that in the community," he says.
One more "green shoot" is a second chronic pain support group on the North Shore, part of the Chronic Pain Association of Canada and founded by Divine in 2005. It meets the third Wednesday of every month, from 1 to 3 p.m. at Mollie Nye House.
Current co-facilitator and North Vancouver resident Linda Soltysiak, 64, has been living with chronic pain for 34 years, and was eventually diagnosed with fibromyalgia and Ankylosing spondylitis.
Like Divine, chronic pain drastically impacted her life, changing the course of her career and her level of ability. Also like Divine, Soltysiak found a new calling, a host of new interests and works to positively impact the lives of those she connects with at her monthly meetings.
"It's just realizing that things have changed, that it's different now, and you just have to make the best you can with what you've got," she says.
"I guess what I tend to concentrate on now is not what I can't do but what I can do."
For more information on the People in Pain Network, visit pipain.com. For information on the North Shore Chronic Pain Support Group, email [email protected].
