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pain often seems like a simple experience—put your hand on a hot stove, you feel the burn and pull your hand away. but there are a lot of cases where you can’t just pull away from the pain. daily distress or chronic pain flare ups disrupt people’s lives and chip away at their sense of self.
pain is a nervous system signal alerting you to potential harm. but physical and emotional trauma can mess with your nervous system and throw pain signaling out of whack, so it won’t turn off.
treatment for chronic pain is not as straightforward as bandaging a cut or putting a cast on a broken arm—those are injuries that you can see and identify. but what happens when you can’t see it?
chronic pain is often an invisible disease—felt but not seen—that affects eight million canadians or one in every five of us. it’s described as pain that lasts longer than three months. for some people, it turns into years of torment and disability.
as experts point out, chronic pain has a history of being dismissed as imperceptible and untreatable. but now, the healthcare system is taking chronic pain seriously. it’s an important step forward to helping patients feel heard and validated, while opening the door to new care pathways.
“it’s impossible to live as a human being without having pain at some point in your life,” says dr. hance clarke, medical director of the pain research unit at the toronto general hospital and president of the canadian pain society.
“for most people, you have an acute pain that serves as a physiologic kind of deterrent to protect you, saying ‘hey, this is injured, you have to protect it, it’s going to get better at some point.’”
for others, he continues, “you end up in a space where that pain is lasting for longer and you’re now in this chronic pain space. and what is chronic pain? it is now considered a disease unto itself, because the nervous system has changed. and unfortunately, we don’t know how to return it to its previous state.”
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the reality of chronic pain
you can’t know what chronic pain feels like until you experience it for yourself. it’s unique to every individual, pushing them to accept limitations they never expected, and work to overcome those challenges where they can. chronic means life-long, through long days and restless nights that can be excruciating.
hearing the voices of people with chronic pain gives their journey validation, recognition and the hope for empathy from others.
lene andersen: living with arthritis and fibromyalgia
“we need help explaining what pain feels like because pain is often treated with suspicion,” says lene andersen, 62, an author, photographer and health and disability advocate in toronto. andersen has lived with autoimmune arthritis since she was four years old and has used a power wheelchair since her teens.
“why do i have to perform my illness and my pain in order for others to believe it?”
andersen was diagnosed with a form of autoimmune arthritis that’s now called juvenile idiopathic arthritis. her particular type is similar to rheumatoid arthritis (ra).
“back then they treated these kinds of autoimmune arthritis with aspirin and heating pads,” she says, noting that without medication the disease destroys your joints and attacks organs. in the four years leading up to her 16th birthday, she spent most of her time in hospitals and underwent two hip replacements.
years later, she had a “catastrophic flare of my ra that almost killed me,” she says. her rheumatologist prescribed a new biologic medication, one that targets specific anti-inflammatory proteins, and it worked. she’s been on the same class of drugs since 2005.
“it changed my life. it was the first time ever a treatment worked for me.” she still has chronic pain from ra because her joints are damaged, but she no longer has flare ups of inflammation.
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sadly, though, around the same time her ra went into remission, she developed fibromyalgia, a chronic condition with widespread pain in muscles and soft tissues that has also left andersen with fatigue and cognitive issues like brain fog and poor memory.
“one of the ways pain affects you is how much energy it requires to do things. pain is difficult to describe,” she says. “when you have ra inflammation, the fluid in your joints increases so you get swelling where there is no space. it kind of feels like somebody’s prying your bones apart.”
fibromyalgia pain is different, she notes, “like a very loud white noise that makes it difficult to focus on anything.”
over the years, she’s learned how to pace herself and not take on too much. “i’m better at being comfortable with setting boundaries. i’m not feeling guilty like when you have to cancel something because you made a plan when things were decent, and then you woke up that morning and things were not.” another key strategy to manage chronic pain is to focus on joy. find what makes you happy so you don’t rabbit hole into misery.
“for me, the answer is to find hope and to find joy and to find something to laugh at. it’s about having a variety of things i can do that require different levels of energy and ability so that even on a low ability day i can do something meaningful.”
speaking and writing about her life with chronic pain is a way to encourage others to advocate for care and make change.
karen smith: living with chronic back pain and sciatica
karen smith remembers the unexpected moment when her life changed. she was a director in public relations at st. francis xavier university in antigonish, nova scotia walking across campus with her staff and her right leg gave out from under her. she was 29 years old.
“it was like i got shot in the back and i fell down. my briefcase went flying and everybody screamed. they thought i had a heart attack because you’re standing and then all of a sudden, boom, you’re down.”
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she learned she had an irregular bone growth on her spine that was pinching the s1 nerve, the one that exits at the base of the spine, which can lead to leg pain and numbness.
nerves supply the electrical impulses for muscles to function, so disabling the nerve can affect the ability to walk and drive—which is what happened, turning into a horror show of a botched back surgery that removed too much bone and caused her vertebrae to collapse.
the severe pain meant she couldn’t work, barely slept and then had a second surgery to try to stabilize her spine with a spinal fusion, but the nerves were scarred beyond repair.
smith is now 70, still plagued by jolts of pain that burn through her legs and cause her to spasm uncontrollably. “it looks like i’m having an epileptic seizure, but i feel tremendous pressure in my back. it’s like somebody has got their hands around my waist and is squeezing. that’s the feeling in my lower spine,” she says. she usually relies on a cane to walk in case her right leg collapses.
“i remember the neurologist telling me during the second surgery, ‘if i took one strand of your hair and laid it on one of your nerves, you’d be screaming through the window. that’s how sensitive they are.’”
because her spine is unstable, mechanical movement hurts. her diagnosis was chronic mechanical low back pain with right leg sciatica (pain that shoots down the path of the sciatic nerve), frequent falls and flareups.
ten weeks of rehabilitation therapy became two years of rehab for smith as an outpatient, only to be told that, “despite your herculean effort to try to get back to work, we deem you totally disabled for full and part time work for the rest of your life,” she recalls of the heartbreak of losing her career and livelihood.
as for the damaged nerves that continue to steal her sleep and leave her with crippling fatigue? “you know, they’ve not calmed down. i keep saying, ‘all right already, it’s 40 years, will you calm down?’”
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one of the first things smith did after her diagnosis was dig into the science. what she didn’t find in the literature or in conversation with her specialists is the warning of what can’t be avoided: “the physicians don’t actually tell you that your life will never be the same and it’s going to be hard and you’ve got to have mental resilience to do this because so many chronic pain patients go into a major depression and commit suicide.”
a 2024 study in molecular psychiatry found that with each increase in the number of body sites with chronic pain, the odds of suicide attempt increased by 67 per cent and the odds of death by suicide increased twofold.
“thank god, after all these years, i’m blessed with the mental stamina not to go into a depression and want to give up.”
katie o’leary: living with complex regional pain syndrome
katie o’leary, 37, an artist and writer who works for a marketing company in los angeles, echoes similar thoughts for her management of complex regional pain syndrome (crps), a neurological condition that causes severe pain, changes in skin colour and other symptoms. her chronic pain journey started with a sports injury playing college rugby at indiana university.
she was 21, right before her senior year, training with the team out running the football stadium to condition for the coming season, “when i felt a sharp pain in my hip and i just assumed i pulled a muscle and overdid it,” she says, adding at worst she thought it was a stress fracture that would heal.
she took some time off from rugby but then went back to the game she loved. even though the pain got worse, she kept on going. “it was annoying, but it wasn’t overwhelmingly bad and i could still run and exercise.”
the overwhelmingly bad part came later.
o’leary had moved to california when she finally went to see a specialist for help. imaging tests revealed torn cartilage in her hip, which wasn’t a common injury, but one that women can be prone to.
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“as a teenager i had always struggled with my periods because i was so athletic that i would go months without them and my doctor told me that with athletes that go through that, the estrogen levels that regulate your calcium deposits are low, so you’re more likely to get stress fractures and issues. i had no idea that was true. my mom had no idea, too.”
she also had bone erosion at the site because she had “overdone it so much” with exercise. surgery was advised to repair the tear in the cartilage, but the procedure involved dislocating the hip in the process.
post-op recovery is extremely painful, but two weeks later she started physical therapy in a rehab pool to build up muscle. “it was very slow, but i started noticing a very strange buzzing electrical pain throughout my hip all the way down to my foot and i was just like, man, what is this?”
she was told the nerves were inflamed from the surgery and will settle down, but the pain kept getting worse. then one day she collapsed after physio because it was so painful.
an er doctor had her see a neurologist and six months later after further tests and procedures (including a spinal tap that tore her spinal canal by mistake), she was diagnosed with crps.
“i’m still in pain every day and i’m still struggling,” she says, determined to bring awareness to chronic pain so that others can heal. she helped her friend, indie filmmaker matthew michael ross, develop a character who lives with crps based on her journey with this terrible nerve condition for his film invisible.
the story looks at the often misunderstood world of invisible diseases, addiction and mental illness, and was screened in august in beverly hills where o’leary joined the festivities. she is also linked to for grace, an organization devoted to supporting women who are challenged by chronic pain.
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“my motto to people with this disorder is that you have to curate your distractions to cope with the pain. i start every morning watching something that will make me laugh like two-second funny cat videos,” she says.
“because those two or three seconds in which you’re just laughing and enjoying something, you forget you’re in pain, even if it’s a millisecond. it’s just something to reset, to tell yourself like ‘hey things are still funny.’ i do so many other things, too, like i write, i paint, i do comedy.”
tom norris: living with the ‘fiery dragon’ of chronic pain
for tom norris, 76, chronic pain is a daily battle that he refuses to lose. he’s a retired u.s. air force lieutenant colonel who was stationed in saudi arabia and the pentagon, among other posts.
he now lives in los angeles where his wife works as a character actor in film and television, while he dedicates his time to advocate for chronic pain patient engagement in clinical trials and running a virtual support group for 500 members.
his chronic pain started in 1986, two years after a testicular cancer diagnosis, surgery, and 30 days of radiation therapy.
“the tumour was the size of a basketball,” he says, insisting that his pig-headedness has been a blessing through cancer and everything that followed. “i am not going to buckle under to this crap.”
he remembers one day after going through radiation, feeling so ill and knowing that something wasn’t right. he talked to his doctors for some answers and further tests. a urologist discovered that the entire area that had been radiated was full of scar tissue, affecting muscle and nerve function.
“that’s where the pain comes from. they basically said that my pain started out because of scar tissue from radiation.” another surgery attempted to freeze a nerve that might be responsible for his intense pain, but that failed and that was it, norris says. “they kind of gave up. this was a problem that i had to solve.”
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with the support of his wife, long before the days of google searches, he found a pain doctor who offered alternative therapies, everything from epidurals and magnets to electrical stimulation. these treatments worked for a while but then he turned to another doctor who said he needed to start fentanyl, so he did.
norris was on fentanyl for 10 years. while it dulled the pain, he lost energy, stamina and the “will to live,” he confides.
“i remember vividly, this is a period of time where i was bedridden. i couldn’t drive.
i could barely get to the bathroom. i had absolutely no quality of life and i said i’m getting off this. my pain doctor didn’t want me to.”
i could barely get to the bathroom. i had absolutely no quality of life and i said i’m getting off this. my pain doctor didn’t want me to.”
he suffered three heart attacks that he attributes to the ongoing stress by this point, and now he also has bladder cancer. as it turns out, prostate cancer treatment, especially radiation, increases the risk of developing bladder cancer.
“there’s no way to describe the stress of living with pain all the time.” he tells it in a way that people who love science fiction and fantasy, like himself, can understand.
“imagine wrestling a fiery dragon that has claws that are in flames piercing your body all over. sometimes you can push the dragon away and the pain is relieved. but most of the time, you’re close to the dragon. you’re being burned and you’ve got stabbing, raking pain. for me, that pain goes from the base of my skull down the entire back, both hips, the abdomen.”
and every day it gets worse.
his journey doesn’t stop there—people with chronic pain are fighters, if they can find the support they need. tom’s next pursuit was cognitive behaviour therapy through a virtual reality program where he used a vr headset. one of the most valuable lessons was breathing exercises that help calm the nervous system. now he no longer needs the vr headset to do the exercises.
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“it’s the whole thing of concentrating on your breathing to distract your mind from the pain,” he says. “i’ve always believed we have the power of the mind and the power within us. we just need to tap into it and i’ve been lucky that whether it’s reading about science fiction or mind control or virtual reality, i’ve been able to take those and make it work for me. everybody needs to find something that works for them.”
recognizing the complexity of chronic pain: changing your brain and personality
chronic pain is not a symptom of osteoarthritis, cancer or surgery. it is a disease in itself, whether it begins with surgery, sexual assault, verbal abuse, migraine or osteoarthritis. it is highly complex and scientists are beginning to uncover its biopsychosocial nature, exploring its biological, psychological and social factors.
in 2022, the world health organization reclassified chronic pain as a disease, bringing it to the forefront to drive research and better care. dr. clarke says this is a win for the pain community that has created more awareness and momentum.
people living with chronic pain are the ones hurting, he says, noting that pain is the number one driver of disability. when people can’t work or need ongoing care, lives are ruined and there’s also the fallout of growing costs to employers, the economy and the healthcare system to an estimated $40.3 billion in 2019.
a 2021 analysis by health canada estimated the total number of individuals living with chronic pain will increase by 17.5 per cent from 2019 to 2030 because of population growth and aging, putting the number of people suffering at 9 million by 2030. also by 2030, the total cost of chronic pain is projected to jump 36.2 per cent during this period, so we’re looking at $52 to $55 billion. despite the substantial cost, people living with pain continue to face barriers to care, employment support and other services.
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yet, there are few effective treatments for pain.
clarke is doing his part to remedy this, on a path that was inspired by his dad’s 30-year struggle with chronic pain after a workplace injury in an auto factory fractured his neck and crushed his hip, leading to multiple surgeries.
surgery, whether it’s lifesaving or elective, is another trauma to the body, he explains, and the most common cause of chronic pain. clarke founded the first-ever transitional pain service to help people identified as at risk for chronic pain and pain-related disability after surgery. it offers early interventions with a combination of medications and physical and psychological therapies, to keep pain from escalating. the program has been replicated here in canada and around the world.
chronic pain is a brain disease as much as it is about physical damage, so clarke sees the integration of mental health and pain management treatment as the focus for improved care.
in fact, research has shown that chronic pain takes up residence in the brain’s gray matter, rewiring the neural pathways so that brain function and sensory processing is altered. how you think and behave is changed, essentially reshaping your personality.
smith, for one, says she’s a shell of her former self. she used to thrive working seven days a week, 15 hours a day in public relations. “i’m a type a personality, a perfectionist, so i just couldn’t comprehend it at first,” she explains of the bewildering impact of chronic pain. “it just didn’t compute with me. now i can’t walk far and my stamina’s down from where it was because the lack of sleep has caught up with me,” she says.
“it’s really hard. i used to teach tennis and i was a skier, a skater, a top tennis player.” her saving grace from injuries from numerous falls when her right leg gives out has been her ability to “fall properly” that she learned as a skier.
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smith’s chronic pain took away her ability to work, although she’s done award-winning volunteering and advocacy, including speaking for 10 years at the atlantic pain conference. she was the first patient to address the conference for healthcare providers and received a standing ovation that brought her to tears. “i bawled. i just lost it. i couldn’t stop crying, so i knew that they needed to hear what i had to say.”
the aftermath of surgery took away her ability to have children and the pain spasms made dating too challenging, so she has lived as a single woman on about $21,000 a year. she manages to pay her bills.
as well as having a profound impact on personality and lifestyle, chronic pain often starts early in a person’s life.
science has discovered how neuroplasticity of the brain works to develop new neural networks to learn and stay vital as you age. however, that same neuroplasticity can also work against you when you have chronic pain. your brain can actually create pathways that sustain pain, or make it worse.
“there’s a whole bunch of different reasons why this happens and we don’t understand all of the mechanisms, but basically the pain pathways become sensitized,” says jennifer stinson, a nurse and senior scientist with sickkids’ child health evaluative sciences program headquartered in toronto and a professor at the university of toronto’s lawrence s. bloomberg faculty of nursing.
“it’s like a fire alarm going off at school but there’s no fire. so you have to figure out how to turn that fire alarm off.” sickkids has a holistic 3ps approach to pain treatment for kids and adolescents, with pharmacotherapy when it’s appropriate, psychological therapy and physical strategies, similar to physiotherapy to build coping skills. the goal is to get young people back to school, playing sports and doing the things they want to do.
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“what we try to do is retrain that pain pathway to dampen those signals,” stinson says. there’s a lot of attention on the work because young people’s brains are still developing and more malleable than adults—successful treatment can change the course of their lives.
similar to adults, one in five adolescents live with chronic pain. but 40 to 60 per cent of those adolescents will also be considered treatment resistant. and they go on to become adults with chronic untreatable pain. “so really what happens is for young people, some of them could have a minor injury like a minor sprain, and we need to know, how does that go on to develop chronic pain and what happened?”
as stinson notes, sickkids has the largest pain program in canada with 11 clinics across the country where she’s leading the development of a chronic pain registry in young people. each of these sites is collecting core data on patients, and the registry will be housed at sickkids to investigate what certain programs are doing that result in young people getting better versus other clinics that don’t have those outcomes.
“we still don’t know why some people get better and some people don’t recover. if we have this network, we can do clinical trials within that network to understand what’s working.”
however, there are roadblocks to solving chronic pain. one problem is lack of research funding. health canada launched the action plan for pain in canada in 2021 to boost the investment. despite chronic pain impacting 20 per cent of the population, research in canada received just 3.2 per cent of healthcare funding at its highest in 2019—among the findings in a recent database analysis by clarke and colleagues published in the canadian journal of pain.
having a patient voice in research and clinical trials is also a priority for solving access to care and what actually works in chronic pain treatment.
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“the expectation is you have patients’ opinion throughout all of the research endeavor from its inception to the completion of the clinical trial, which is new, which probably has happened in the past five years,” clarke says of patient involvement.
“we’re at the doorstep of chronic pain becoming a disease and where we go next. canadian society is ready to partner with folks who are willing to bring novel therapeutics forward into the canadian space to help these patients.”
a place for opioids? evolving treatments for chronic pain
the much-maligned opioids are among the most powerful pain medications ever known. while they’ve been a source of overprescribing, morbidity and mortality for over two decades, there are cases where they are needed.
smith has spoken out about the stigma of chronic pain and the reluctance of primary care doctors and nurses to prescribe opioids to patients. “there’s more research and lots of grants for pain researchers, but as far as i’m concerned, we’re still suffering. the crackdown on opioids is a disgrace and discriminatory because opioids for people with chronic pain work,” she says, emphasizing that she’s never gotten high from opioids or steered away from the prescribed dosage.
“if you’re in agony from chronic pain or a horrible toothache that antibiotics don’t help,
tylenol doesn’t help, then you have to go to the emergency, which costs much more than going to a doctor’s office.”
tylenol doesn’t help, then you have to go to the emergency, which costs much more than going to a doctor’s office.”
five years ago, smith was diagnosed with breast cancer, which she considered “a piece of cake” compared to her daily life. on a good day, her pain is a six out of 10 with medication.
“actually, the fentanyl patch got me on my feet. opioids are not for everyone, and i’m classed as a legacy patient now because it’s been so long and i was allergic to many of the opioids,” she says, noting that everyone’s metabolism is different. the anti-opioid stance as a one-size-fits-all solution is flawed.
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determined, she cut down her medication and experienced no withdrawal, however the pain was horrific. “i hung on and persevered, and i’m 50 per cent less (medication) than i was a few years ago.”
dr. john pereira, a pain specialist in calgary and past president of the canadian pain society, is concerned for the thousands of canadians who depend on opioids, taking them as prescribed and not needing higher doses. “doctors are retiring and not being replaced. and nobody wants to take these patients and continue prescribing.” he would like to see an automated opioid renewal system—an “opioid safety net”—for these patients who need help. the topic was among those discussed at the first national congress on pain that pereira chaired in ottawa in 2024 where health canada representatives attended and more than 35,000 watched online.
people don’t necessarily want to be taking these powerful pain-relieving drugs, but what is the alternative?
as clarke says, we can’t just keep handing out needles. pain medication isn’t enough, although physicians continue prescribing.
“what can we do medically? what treatments can we give you? what medications can you take? what injections? people talk about doing injections of steroids and local anesthetics to calm those nerves.”
there is no quick fix or magic pill, he adds. chronic pain is complex and individual, so discovering one successful treatment can’t be the ultimate goal to solving opioid dependency.
“the problem with that approach is that we promise it as though it is a cure, and everybody wants those things, but it can’t always work because it’s in their brain. i always make the patient aware that this has to do with the nervous system and how it changes with chronic pain, and all people’s nervous systems change. and we just need to know how to control it.”
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changing the narrative on chronic pain
pereira has developed fibrofocus, the fibromyalgia group treatment program on zoom in alberta. it delivers a holistic program, bringing in different tools, from how to manage the psychological aspects of living with pain, to the anti-inflammatory diet, to how to do physical activity while reducing the risk of causing a pain flare up, to how to sleep better.
“it appeals to people because the simple biomedical model of ‘you have pain, here’s a prescription and here’s an injection,’ that old biomedical model puts most of the control and most of the power in the hands of the physician. my program is the opposite. it’s about empowering people based on how they think about their pain, how they eat, how they sleep, how they go about their lives,” he says.
that toolbox is evolving, but treatment for chronic pain is still in its infancy, pereira notes, so pain clinics across the country or even within the same city, have different treatments.
“i always tell people that treating pain is a little bit like the wild west where anything goes,” he says. “you can go to some pain centres and they have predominantly psychological inflammatory diet and supplements. some pain centres are all about injections for pain. other pain centres are mostly about medications and prescribing pills. and so there is a real lack of standardization for pain management.”
clinicians have discovered that drugs developed for other conditions, like seizures or depression, can help treat pain. there are a myriad of new medications, most of which are non-opioids, psychedelics, mind-body therapies and implantable devices including spinal-cord stimulators that block pain signals before they reach the brain. there’s also research focused on pain prevention and interventions for people at higher risk of developing chronic pain.
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but here’s the elephant in the room: people at higher risk for chronic pain could be a massive number of people, given the growing and aging population.
as pereira points out, “i’m very concerned because as the population is aging in canada, the demand for pain services is not going to grow a little bit. it’s going to explode. what we are seeing in healthcare is very concerning to me because we have lots of healthcare providers who are retiring or nearing retirement without a clear plan of how to replace them at a time when the population is aging and we’ll have to do more than just replace them, we’ll have to grow those numbers.”
pereira has visited more than 80 pain clinics, including top programs at the mayo and cleveland clinics. he’s incorporated some key components from these programs in his fibromyalgia model, including the importance of staying social, which makes group therapy so powerful.
“i’ve learned about the benefits of when you put people together, then real change can occur. humans are primates. we are social creatures, even if you’re an introvert like myself. social connection is very important. in my program, i talk about the risks of social isolation. for example, studies have shown that it increases other danger messages,” he explains of its impact on the danger signaling of chronic pain.
and with the eight million canadians currently living with chronic pain, and that number projected to skyrocket, you can’t treat them one at a time. he talks about the demand for healthcare that is scalable, efficient and can treat people in groups. “the challenge is how do we support primary care and how do we do that with programs that are highly scalable?”
chronic disease management as a whole is much more about how healthcare providers can empower patients to unlock their natural healing abilities. “their body wants to heal, and our job is to try to figure out what is blocking that natural healing.”
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much like norris, a veteran of decades of living with chronic pain, pereira comes back to the power of the individual to find a way forward: “the greatest healer is inside of you. don’t look at it as though you’re going to go to someone and they’re going to fix you.”
would this advice resonate with people like smith who tries to stay positive having endured years of hardship? her twin brother wonders how she is always smiling when he sees her, despite her pain.
“the thing about chronic pain is it’s inconsistent. i never know,” she says, emphasizing that she wants people to speak up about their pain and get help.
being quiet and invisible gets you nowhere.
“tell your doctor. describe your pain in explicit detail using words that they will understand, like burning, robbing of sleep. chronic pain is a real soul destroyer when memory, concentration, sleep, relationships and financial ability are all affected.”
andersen is just as emphatic about speaking up and being part of the solution. “it is vital that those of us who have these illnesses and conditions are involved in developing programs, developing policy. there’s a saying in the disability community that applies: it says nothing about us without us,” she says, adding that having experts talk about pain only goes so far.
“they can talk about the cause of it or the treatment of it. but you know nothing unless you live with it. you know nothing about what it feels like.”
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we want to extend our deepest thanks to everyone who made this story possible. to the individuals living with chronic pain who bravely shared their experiences—your honesty helps illuminate the reality of a condition so often unseen. and to the healthcare professionals, advocates, and researchers working tirelessly to understand pain and push for better solutions—we are grateful for your dedication. by bringing these voices together, we hope to spark greater awareness, compassion, and progress. – the healthing team
from top left, clockwise to bottom left: tom norris, katie o’leary, lene anderson and karen smith
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