Physical and mental ails intersect when it comes to chronic pain
“You have an idea of what your life is going to be, what your goals are going to be. And then you get sidetracked by it—you get thrown off course by something that isn’t your fault, and how do you deal with that? For me, I grieved, I went through the grieving process for my old self.”
Sitting in a Starbucks in College Square, Otia Bates, a 35-year-old insurance specialist, spoke with the fire of someone who has been fighting their own battles for a long time. She should be tired. Yet her energy and passion betray nothing of her 20-year battle with chronic pain.
She isn’t the only one fighting.
According to the most recent study into the prevalence of chronic pain in Canada, published in the Pain Research and Management journal, about one in five Canadians reported chronic pain as of 2011. With a population of over 40,000, this means roughly 4,000 students, staff and faculty members at U of O could be experiencing some form of chronic pain, facing what can be a life-altering experience: For some, there is no “getting over” it. Given this number, does the University of Ottawa do enough to support their community members who face chronic pain?
Most medical organizations define chronic pain as pain that extends for a duration of longer than 3 months. But this definition, while widely accepted and used by many, does not adequately encompass the breadth and depth of a life lived with chronic pain, according to interviews with four people, including Bates, who live with chronic pain.
Canada Research Chair in Health Psychology Joel Katz, who is also research director at the Toronto General Hospital’s Pain Research Unit and professor at York University, told the Fulcrum in an interview that defining chronic pain isn’t as simple as the widely used time-based definition (three months or more of pain) makes it out to be.
According to Katz, chronic pain is pain that doesn’t necessarily have biological value, that persists beyond normal healing time: Pain, that in general, doesn’t respond to treatment. Another problem with a time-based definition, Katz said, is that pain can be chronic from the second it emerges as is the case with post-surgical nerve damage, for example.
Beyond the complexity of semantics, addressing chronic pain can take a manifold of pathways to healing and management that involves both the mind and the body. When it comes to chronic pain, the mental and physical are often inextricably linked.
One study published by Statistics Canada in 2015 stated “the association between chronic pain and poor psychological health is well established.” Based on the 2011-12 Canadian Community Health Survey, the study found that overall 79 per cent of Canadian adults described their mental health as flourishing, while in people with chronic pain, this number was 69 per cent.
Moreover, the study found these numbers decreased in people with chronic pain with the severity of the pain itself and the number of activities this pain prevented people from participating in.
Chronic pain and mental illness: A package deal
Julia, a 25-year-old graduate of the U of O who asked her full name not be used due to concerns surrounding the stigma she could face at work or school from her chronic pain, described her daily battle with migraines since undergoing brain surgery.
“I developed depression and anxiety, strictly related to the pain,” she said. “I get panic attacks linked to how much pain I’m going to be in and I get depressed based off of pain I have to deal with.”
Her words speak to a cycle that can be incredibly hard to break, and brings up questions of what to treat first: The pain, or ensuing mental health issues or mental illness that might develop?
For Ariana Coleman, a 19-year-old Carleton University student, physical and mental pain go hand-in-hand. Coleman has been dealing with chronic pain since she was 10.
In an email to the Fulcrum, she described a wide variety of symptoms, from fatigue to muscle and joint pain primarily focused in her jaw and back. Coleman has been diagnosed with hip dysplasia, and immune thrombocytopenic purpura—due to unusually low platelet levels, Coleman’s body is prone to bleeding and bruising, leading to fatigue and an inability to sleep well.
More recently, her rheumatologist diagnosed her with fibromyalgia (a long-term condition that causes pain all over the body) and Raynaud’s syndrome (a condition that causes some areas of the body, especially fingers or toes, to feel numb or cold due to cold temperatures or stress). But the medical explanation for her chronic pain comes in puzzle pieces that don’t quite explain the whole picture, and she said this uncertainty is incredibly difficult.
The science on chronic pain, in line with Statistics Canada’s findings, tells a similar story. For example, Katz conducted a small study of 42 York University students with various forms of chronic pain (migraines, back pain, and joint pain). The study found that almost all participants fell into the moderate range of having symptoms of depression and anxiety.
So where do individuals like Bates, Coleman, and Julia fit in when it comes to receiving help for long-term physical pain, and the mental health illnesses that follow like a shadow? Explicit help for the latter is growing, with many university campuses championing new initiatives to improve student’s mental health and well-being. In today’s digital age, help is just a click away. But when it comes to receiving help for the former, there may be more difficulties to contend with.
A look at the U of O’s chronic pain resources
If you Google mental health resources at the U of O, you’ll be met by a page of links to the university’s mental health and wellness resources, health services, on-campus help, and off-campus help. In stark contrast, a search for chronic pain services at the U of O yields no results containing portals to campus health services.
In an emailed response to the Fulcrum’s question as to what specific services the university provides for community members dealing with chronic pain, April MacInnes, senior mental health advisor at the U of O, said “health and medical needs and awareness needs are so vast, the university could not possibly provide awareness on every issue without diluting the message.”
“Otherwise they would need to provide resources and supports for everything from measles, recovering from tropical illnesses for those who have been abroad, to autoimmune diseases and cancer.”
MacInnes’ response highlights the issue that campuses across Canada face when providing health services for the vast and diverse needs of their students. Does a blanket title like mental health and wellness really provide the right tools for those facing chronic pain on campus?
MacInnes suggested that rather than a one size fits all approach, the campus provides a range of services that can then be tailored to a specific need, aligning well with the “stepped care model” promoted by Student Academic Success Services (SASS).
The care model is comprised of a set of online and in-person programs completed by users independently, one-on-one, or in group settings. The goal of the model is to provide accessible tools for strength-based skill development so the individual can better manage their own wellness. That being said, there is an option at the last step of the model for a referral to a medical specialist.
This approach is backed by the Centre for Innovation in Campus Mental Health, a partnership project between various provincial post-secondary alliances, and the Ontario division of the Canadian Mental Health Association.
Treating chronic pain
According to Katz, the model that best fits chronic pain treatment is two-pronged: medical treatment and self-management. Katz said the gold standard in the medical world for treating chronic pain is a multidisciplinary pain centre. These are centres that employ doctors, nurses, psychologists, physical therapists, pharmacists, social workers, occupational therapists and chiropractors, among other experts, to treat the different symptoms and issues caused by chronic pain.
The usefulness of a multidisciplinary pain clinic was emphasized by Elizabeth Chatelain, a 56-year-old nurse and research manager who was officially diagnosed with rheumatoid arthritis (RA) three years ago. Elizabeth deals with more than her fair share of chronic pain due to the inflammation associated with the autoimmune condition.
Chatelain described the services she has accessed over the past three years to deal with both the RA and the chronic pain. One such resource was a social worker, who focused on her disease and what funding programs might be options for Chatelain, discussing the pros and cons of each approach.
It was advice that Chatelain’s other specialists (such as her physician and rheumatologist) could not give, she said. Having all the medical resources in one place is a model that she believes works.
“You’re drowning in a whole lot of things. I hurt … I don’t know where I’m going, what I’m supposed to be doing and to have a team of resources available to help you, it’s huge.”
But there are massive barriers to implementing such programs on post-secondary campuses.
“Imagine the cost of adding that (service) to campuses,” Katz said, referring to the large number of professionals from a wide array of backgrounds who would need to be hired.
Instead, it appears that the best way to funnel patients with chronic pain towards these centres is to do so through referrals to what resources there are in the community. According to Katz, in Canada, the best multidisciplinary pain treatment centres are located in hospitals. Those centres, while increasing in number, are still too few, Katz said.
Referring to a study published in 2016 in the Pain Research and Management journal, Katz painted a clear picture. According to data gathered in 2007, Canada had one multidisciplinary pain treatment facility for every 258,000 Canadians. With the prevalence of chronic pain among Canadians sitting at about 20 per cent, per the most recent numbers available, that’s 52,000 Canadians living with chronic pain for every one specialized clinic.
Canada, over the past 10 years, has accumulated more funding and focus on opening clinics like this, but “it’s a drop in the bucket” Katz said, if we are to provide right kind of chronic pain help to all of those who need it.
Self-management as treatment
Katz’s view for treating chronic pain also contains elements of the stepped care model promoted by SASS: The key to managing chronic pain is much like managing any chronic illness: Self-management.
“Get to know your pain and the things in life that are important to you,” Katz said.
But this is no easy task: We are taught to run from pain. We run to our teachers, parents, and doctors. Dealing with chronic pain isn’t that simple. At some point, people dealing with chronic pain must turn inward, and face our pain, manage our expectations of ourselves and our lives. Re-evaluate what is important to us.
This term, for some, can sound hopeless. Isn’t medicine supposed to cure us? Katz compared the management of a life with chronic pain to a life with diabetes. Just as with diabetes, a person dealing with chronic pain must manage their diet, medication, and physical lifestyle.
But there are differences. There is a dimension to chronic pain that isn’t always present in other diseases, such as diabetes. The healthy individual, through no fault of their own, takes their body for granted. Out of necessity, the individual facing chronic pain must find new meaning in the body, reframing the context of what it means to live a wholesome life.
While Chatelain, Bates, and Julia have all described experiences that for the strongest of individuals would be challenging, they are not without hope or advice: To put it simply, get active, in whatever way you can. For both Chatelain and Coates, this meant finding a physiotherapy centre that offered pool therapy, while Julia said she will be trying yoga this month. It’s advice that is echoed by Katz.
There was another central theme to the advice from Chatelain, Bates, and Julia. Getting help for the mental health implications of chronic pain is equally as important for quality of life as is seeking treatment for the physical implications of the pain.
For Julia, this meant getting involved in community-led chronic pain and mental health support groups—both resources that were recommended by her physician and her psychiatrist. Julia’s message was clear: Create a safe space to explore yourself and your pain in a new capacity, with new activities, values, and communities.
Despite the daily migraines, the countless medications, and the numerous doctors visits, Julia spoke to the gratitude she can feel towards her pain: It reminds her of how resilient she can be. Her pain has brought her strength, the strength to go back to school next year for a masters degree.
At an institutional level, it’s more important than ever to ask questions and understand the student experience with chronic pain and mental illness. What can we do as a community to enable them to explore life in a new capacity? With the knowledge that many students on campuses across the country and the world are facing chronic pain, how can they begin to do better?
If you’re dealing with chronic pain and need help, reach out to some of these resources below.
Ottawa multidisciplinary pain clinic: The Ottawa Hospital chronic pain management program