Health

I Have Chronic Pain. Why Is Relief So Hard To Find?

When my wrists started to twinge in February 2021, I assumed it was temporary. Instead, I joined the 20 percent of Canadians who experience chronic pain.

Illustration of women sitting on a purple floor surrounded by match flames.

(Illustrations by Holly Stapleton)

A little over a year ago, a dull pain started forming in my wrists whenever I worked. It came on when I typed and sometimes lingered long afterwards, throbbing up my forearms. I pushed through it, assuming it would go away with time.

Instead, dull pain turned into sharp, shooting bolts that made me wince. My fingers started to tingle, and then went numb entirely. On a bad day, I couldn’t type through the searing pain that started at my neck and moved down through my arms and into my hands. On a worse day, I couldn’t feel my hands at all. By March 2021, my life had been altered completely. It was no longer just typing that caused me pain; it was buttoning shirts, turning on the faucet, thumbing through a book.

As a freelance writer and illustrator, I felt my livelihood become more unstable during an already challenging time. What’s more, I had witnessed my then girlfriend, a pianist, experience similar symptoms in the years prior. Not long after we met, she started feeling pain in her wrists when she pressed her fingers down onto the keys, her sonatas cut short when it got to be too much. Suddenly—seemingly all at once—she could barely play at all. She was diagnosed with tendinitis; after months of treatment, she started to recover, but she never fully regained her original skill on the piano.

I didn’t fully understand what she had lived through until it happened to me: how all-consuming it is to constantly hurt, and the immense sense of loss you feel when your body keeps you from the things you love.

I didn’t know it at the time, but those first twinges in my wrists would become my introduction to the world of chronic pain.

***

Chronic pain, which is generally defined as pain lasting for three months or longer, can be categorized as either primary or secondary. Primary pain, explains Dr. Andrea Furlan, an associate professor of medicine at the University of Toronto, is a disease of the pain system and not a signal that there is an injury to be fixed. Secondary pain is caused by an identifiable and treatable problem—say, arthritis or injuries from a car accident. Regardless of whether it’s primary or secondary, chronic pain is persistent and you experience it every day—though some days are worse than others.

“Many [people with chronic pain] are still living a normal life as much as they can, but they pay the price,” says Furlan. “If they can maintain a full-time job, when they get home, they are extremely fatigued. They can’t help other people; they can’t socialize.”

It’s estimated that nearly eight million Canadians live with chronic pain—that’s roughly 20 percent of the population. Despite this, we don’t tend to think or talk about its effects. I’ve felt this first-hand. When I tell people about my symptoms, they either don’t seem to believe the severity or offer recommendations they swear will cure me, from taking Aleve to smoking CBD. The assumption from many is that pain is an easy problem to fix.

Maria Hudspith knows that’s not the case. She’s the founding executive director of Pain BC, an organization established in 2008 that advocates for pain patients, hosts support groups, fosters research on pain and educates health care workers on how to better assess and treat it.

Getting people to take chronic pain seriously has been central to her work. Beyond a poor cultural understanding of the issue, Hudspith says there’s a lack of understanding in our health care systems. Furlan agrees: “Chronic pain is not taught in medical school; it’s not taught in family medicine residency,” she says. The result is that patients are often dismissed or improperly diagnosed.

Part of the problem is that the idea of chronic pain is still relatively new. Pain medicine wasn’t recognized as a specialty by the Royal College of Physicians and Surgeons of Canada until 2010, and the Canadian Pain Task Force—a federally appointed group charged with making recommendations on the prevention, assessment and management of pain in Canada, which Hudspith co-chairs—wasn’t established until 2019. Given that it’s only been an area of specialization in Canada for 12 years, there’s a lack of practitioners who are trained to treat it. “That basic sort of recognition and infrastructure has been very slow to evolve,” says Hudspith.

Chronic pain is closely linked to another public health crisis: opioid addiction. Those who are never properly treated for their pain may develop substance-use disorders in an attempt to self-medicate, while effective relief is now harder for chronic-pain patients to access as doctors reduce the amount of opioids they prescribe.

Hudspith stresses that a holistic approach to treating chronic pain is crucial to mitigating its effects. Pain patients often need access to other practitioners in addition to their family doctor, including social workers, occupational therapists, mental health professionals and more. This way, chronic pain can be treated alongside related conditions, like anxiety and depression, while helping patients readapt to everyday life. Though this need is addressed by pain clinics, which connect patients to a variety of practitioners and support systems, such clinics are still few and far between. Many people with chronic pain are left to find relief on their own, navigating an often-overwhelming health care system.

***

That’s the position I found myself in last year. When my symptoms began, I was living in Nova Scotia, a province with a profoundly felt family doctor shortage. Without access to a GP, I made an appointment with one of the few physiotherapists in my area, who diagnosed me with carpal tunnel syndrome. I never thought to question her.

Our weekly appointments consisted of manual therapy and education about how to manage my symptoms. I was given a host of exercises to do every day, many of which I’d watched my girlfriend do in the years prior. I followed the routine to a tee, but my condition kept getting worse. As I lost access to my work and my hobbies—cooking, crosswords and video games—I began to question who I was without them.

After two months of weekly appointments without any progress, my therapist told me that she didn’t think physio was going to provide me with long-term relief, and that she couldn’t, in good conscience, keep charging me for treatment. (In other words, she dumped me due to my lack of progress.) I felt angry with myself. I was convinced if I’d just done my exercises better or gone in for more appointments, I would have seen results.

I started looking into carpal tunnel surgery and found another physiotherapy clinic in the meantime. My next physio also immediately diagnosed me with carpal tunnel. As I sat through dry needling, continued with at-home exercises and paid out of pocket for treatment that wasn’t working, my condition kept getting worse. Feeling like I didn’t have other options, I stuck with this regimen for another three months.

In all, I went to physio for the wrong condition for five months. Since chronic pain is so complicated, Furlan says, practitioners often reach for the simplest solution. What’s more, neither of my physios talked to me about what my enduring pain actually meant. I had no idea that, as it transitioned from acute to chronic, it could be considered a disability. Despite how much I was struggling, I didn’t feel comfortable asking for accommodations at work or school, nor forming a community with other disabled people. I didn’t know I might be eligible for treatment at pain clinics, nor that it was normal for my mental health to suffer. Instead, I felt embarrassed when I teared up at appointments and my physiotherapists seemingly didn’t notice.

The frustration I felt during that time was all-consuming. I had to take a months-long break from drawing, and I started operating my computer with my voice because I was no longer able to type.

At the time, I was also a grad student in my dream creative writing program. Though it took me a long time to admit it, keeping up with both work and school felt physically impossible. I tried to write at the same pace as my classmates, growing angry with myself when I couldn’t. As my peers shared their work during our virtual classes, I’d often turn off my camera and cry, unsure if I’d ever be able to write as well as them again. I eventually took a leave from the program.

***

I’ve been in pain for more than a year now, and it unfurled alongside an unrelenting pandemic. In those first six months, without the distraction of socializing with friends and family, I spent my days sitting in my apartment and thinking about my pain.

Lockdown also made it harder for my loved ones to fully understand what I was going through, as they weren’t able to see how it affected me. Though my symptoms were the central concern in my life, they often felt like a conversational footnote: “And how are the hands? I’m sure they’ll get better. Anyway!” I got the sense that people were uncomfortable talking about my pain and itching to change the subject.

Luckily, I had a supportive partner. She took on a bigger share of household work, encouraged me to do my exercises and listened as I ranted or cried. I was grateful for her, but I felt (and still feel) pangs of guilt as I struggled to come to terms with how little I’d been able to empathize with her when our roles had been reversed.

Looking back, I should have sought help for my mental health. (I now know there are therapists who specialize in chronic pain.) Instead, I suffered quietly, still not understanding the extent to which my physical and mental well-being were linked.

***

Illustration of two hands reaching upward and one hand gripping the others wrist.

(Illustrations by Holly Stapleton)

Anyone can experience chronic pain, but certain groups— including seniors, people living in poverty, racialized people, women and more—are disproportionately affected. These disparities are driven by multiple factors. One of these is bias from white health care practitioners, who, studies suggest, may be more likely to believe that Black patients are less sensitive to pain than white patients. Another factor—considering that treatment from specialists like physiotherapists and massage therapists is generally paid for out of pocket—is the ability to afford care, especially during the pandemic.

“People living with systemic inequities already presumably had more issues accessing pain relief,” says Lise Dassieu, a health sociologist who co-led a two-part study that examined the first wave’s impact on people living with chronic pain. “The pandemic added to their pre-existing challenges.”

COVID-19 affected pain patients in multiple ways. Several studies conducted in Canada and internationally showed the pandemic exacerbated both the physical and emotional effects of chronic pain for many, and Dassieu’s research (for which Pain BC was a partner) found that some patients reported feeling new or heightened pain symptoms during the first lockdown. Being separated from friends and family seemed to aggravate physical symptoms as well as psychological distress, as some patients had more time to fixate on their pain.

Lack of access to treatment during the pandemic also made life harder for people in pain. Pain clinics either ceased or reduced their in-person appointments when cases spiked, while our strained medical system led to longer wait times for surgeries and other procedures. Anusha Gandhi, who has struggled with chronic pain from both endometriosis and ulcerative colitis, says the pandemic left her managing symptoms on her own.

“I didn’t have access to any of my doctors, and all of the tests that I needed to have done were cancelled,” she says. Pushing herself when she wasn’t able to seek medical help led to such bad flare-ups that she ended up in the emergency room three times over the past two years.

Even after pain clinics and other medical facilities opened up again, COVID remained a risk that prevented many pain patients—some of whom have compromised immune systems—from accessing treatment, as a potential COVID infection could worsen symptoms or bring on new ones. I’ve felt this deeply: At the height of the first Omicron wave, I stopped seeing my physiotherapist. My pain and numbness immediately flared up.

A desire to stay safe can also distance people from their communities. “I’ve hugged three people in the past two years,” says Aggie Panda, a decades-long pain patient whose symptoms have gotten dramatically worse since the beginning of the pandemic. “That’s not healthy.”

Panda, who lives alone in Toronto, still feels isolated—especially once COVID numbers started shooting up again this April after most of Ontario’s restrictions were lifted. Though they recognize the effect that social distancing has on their mental health, they say the risk of getting sick isn’t worth changing their behaviour.

Beyond physical isolation, emotional isolation often accompanies chronic pain. I still struggle to make family and friends understand how I live. Part of this is because we often think of pain as a fleeting sensation. It’s hard to imagine what it’s like to be hurting at all hours of the day—to be at a point where you don’t remember what it was like not to hurt. This all plays into one of the most overlooked aspects of chronic pain: the emotional and mental toll. There’s a clear correlation. Chronic-pain patients are more likely to experience anxiety and depression, as well as other mental health issues.

“Sometimes people may become suicidal, or they may lose their jobs, or their families may fall apart. And many of those things can be mitigated if people get help early,” says Hudspith.

She explains that the relationship between pain and stress is cyclical. Increased pain leads to more stress; increased stress results in more pain; and so on and so forth. At a time when losing access to both care and support systems means an increase in both physical and psychological distress, this feedback loop can feel never-ending.

***

In September 2021, after my girlfriend and I broke up, I moved to Toronto. There, I was finally able to find a family doctor and a physiotherapist who believed the severity of my symptoms.

In addition to support, I finally got answers. I never had carpal tunnel syndrome. Instead, my Toronto physiotherapist immediately diagnosed me with thoracic outlet syndrome, meaning my nerves are compressed in my chest, likely due to all of the time I had spent working from home, hunched over my computer without an external mouse or keyboard, or a laptop stand.

Upon finally receiving the correct diagnosis, I felt an overwhelming sense of relief and validation; understanding why I was hurting made me feel more in control, and it explained why my earlier treatment hadn’t worked. However, I was frustrated at how long it had taken to get there. My Toronto physiotherapist told me if I’d been properly diagnosed when I first sought care, my symptoms probably would have gone away after a few weeks.

Today, my hands are much better than they were—getting the correct treatment helped immensely, as did finding adaptations and accessibility tools (like a more ergonomic drawing set-up) that make my day-to-day life easier.

As my physical health has improved, so has my mental health. Though I’m still in constant pain, with the help of my physiotherapist and occasional massage therapy, it’s become manageable. I can draw for short stints, type for a few minutes at a time and cook with relative ease. With a proper diagnosis, I feel more hopeful that I can keep my pain under control. And now that I understand chronic pain better, I also know that my symptoms aren’t a personal failing.

That said, there are also days and weeks when my flare-ups are so bad I can’t sleep, and my productivity wanes. And because my symptoms weren’t taken seriously for so long, there’s a good chance that I might never fully recover.

I spend a lot of time thinking about how different my life would be if the first physiotherapist I saw had taken the time to actually figure out what was causing my pain. I think about how much more I could have written and drawn. About how I would still be in grad school, wrapping up a thesis I never got the chance to start. About how much easier my job would be if I could type this 3,000-word feature instead of dictating it. And I think about all the small ways my life might be better, too: I could use fresh garlic instead of the jarred stuff; I could play new video games; I could carry home groceries instead of ordering them.

I’m not sure what will happen from here. I recently moved from Toronto to Montreal, where I lucked out in finding a physiotherapist who specializes in chronic pain. He talks to me about my physical symptoms as well as the mental struggles that accompany them, like the psychological pain of not being able to build an Ikea dresser by myself, or still feeling like I’m lagging behind my colleagues. However, I once again need to find a GP I can trust. I’ll keep trying different remedies and doing my physio exercises. Hopefully, I’ll keep improving, too.

I’ve come to terms with navigating the world as a disabled person, and I’m learning to be more patient with myself when things are difficult. I also feel less isolated—as I’ve become more comfortable sharing my experiences, I’ve found community with other disabled people. However, if one in five Canadians are experiencing the same thing I am, coming to terms with my chronic pain shouldn’t have been so difficult.

It’s clear the culture surrounding chronic pain needs to change—both medically and socially. There are still days when the lack of understanding from certain people in my life feels staggering. On a recent phone call, one of my immediate family members insisted that I wasn’t disabled because he “doesn’t see me that way.” Friends to whom I’ve explained my condition continue to invite me to activities that aren’t accessible to me, like video game nights and dinner parties that require communal meal prep, and acquaintances throw out unsolicited advice that feels insulting: Have I tried icing it? Have I tried yoga?

In addition to making life harder for those who already had chronic pain, the pandemic might create more of us, as lasting pain is a potential symptom of long COVID. It’s clear that Canada needs a more robust infrastructure for treating pain. This means adequately training health care providers and creating more pain clinics. It also means addressing the long-standing inequities in our health care system.

In March 2021, the Canadian Pain Task Force published a report that outlines recommendations on how to achieve just that, including equitable access to timely care, investing in pain research, educating pain patients and health care practitioners about treatment, and more. If these recommendations are taken up, we might finally see some of the gaps in our health care system shrink. (It’s also worth noting that Canada is one of only a handful of countries that have created a national strategy for pain.)

Beyond government, a fundamental shift needs to happen in how we talk about chronic pain and its impacts. At the very least, we need to start talking about it, and to believe people when they tell us how much they’re hurting.

Get Chatelaine in your inbox!

Our very best stories, recipes, style and shopping tips, horoscopes and special offers. Delivered every weekday morning.

FILED UNDER: