the silent drain: underestimating the $33-billion impact of arthritis in canada
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jessica taylor's ability to stand and be mobile is compromised by osteoarthritis in her foot—aggravated by two failed surgeries as a teenager to repair the ankle joint—where pain can be excruciating.
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at 27, jessica taylor knows she can’t keep doing her job forever. she’s an operating room nurse at victoria hospital in london, ontario, who has to be thinking on her feet most of the time.
“in those trauma situations when you’re running on adrenaline and you’re just like, ‘i’ve got to do this, got to do this,’” she says of the pressure to perform. surgical teams do a lot of advanced laparoscopic surgery with cameras, but in some cases, what starts out as laparoscopic leads to bleeding and the need to convert to traditional surgery.
“we take the cameras out, cut a big incision and (the patient) is opened up. and if someone’s bleeding, that has to happen in a matter of seconds to minutes. you have to always be thinking, ‘what do i need to grab? where do i find that?’ and i work a lot of evening shifts with a limited number of staff, so you’re trying to do all this by yourself or maybe with one other person, grabbing what you need, opening it and being able to respond.”
but here’s the twist: her ability to stand and be mobile is compromised by osteoarthritis in her foot—aggravated by two failed surgeries as a teenager to repair the ankle joint—where pain can be excruciating.
so, chronic, excruciating pain for a 27-year-old.
“my work is kind of the centre of everything because i want to do well at work and i like my job. i sometimes push myself more than i probably should, and i often say that i don’t have a life outside of work because everything i do is managing my pain and trying to make sure that i can get to work the next day.”
other times, she thinks the stress and pain are too much. “i think, my god, i hate this. why am i doing this? i could have a desk job somewhere, which at some point in my life, i’m going to have to do that. i won’t be able to do this forever.”
when we think about arthritis, the perception is that it’s a problem for older people who face pain and mobility issues and need help.
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but the reality is far different from public perception—even for people who live with the disease. it’s not just wear and tear as you age; it can also be an autoimmune disease that attacks the joints.
arthritis is a term for more than 100 different conditions affecting the joints, surrounding tissues and other connective tissues. six million canadians, more than one in five people, live with arthritis today.
arthritis impact: gap in perception vs. reality
the perception vs. reality gap is what leger healthcare and the arthritis society canada have exposed with their new research, titled arthritis: the silent drain on canada’s economy. the team surveyed more than 1,600 canadians on their perceptions of arthritis and explored the experience of respondents with arthritis who are still in the workforce.
most alarming, report authors say, is that only four per cent of respondents recognized that arthritis is the leading cause of disability. lack of awareness means that no one (from government and policymakers down the line) is focusing on the $33 billion hit to the economy in productivity and healthcare costs.
“it is really important to highlight the fact that half of canadians with arthritis are under 65,” says melicent lavers-sailly, vice president of healthcare research at leger. “and if we think about people over 65, the impact of empathy has to do with policy, treatments and supports. but if we think about the people in the workforce, it’s also about the role of employers, policy around employment, and the percentage of people (50 per cent of those surveyed) who didn’t feel comfortable even bringing (their arthritis) up with their employer.”
if there’s no communication between employers and employees, people are not going to get the support and accommodations they need to do their jobs.
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“i think there’s that stigma and even a concern about promotions. if you need an accommodation, does that make you less promotion-worthy?” lavers-sailly says.
she’s personally invested in the research because she was diagnosed with arthritis at 35. “i had done yoga in the morning and then all of a sudden i was walking up the stairs and my leg hurt so much i couldn’t move it. i couldn’t bend my leg. right away with the x-ray, they’re like, ‘oh, you’ve got osteoarthritis in your knee. and by the way, the other one has it too.’” her mother is almost immobile from the disease, so she knows exactly what can happen to people with chronic disability.
lavers-sailly has had only occasional pain over the last decade, and she’s taken steps to prevent further problems down the road.
arthritis needs recognition, empathy
one of the challenges for wider recognition is that arthritis can be invisible to people, she notes. the research points to the need for employers to educate the workforce on arthritis, ensure benefits plans are current with arthritis medication and supports, and review improvements in accommodations.
other key findings included:
- 24 per cent reported receiving workplace accommodations.
- 18 per cent said they had accessed workplace benefits related to arthritis.
- only 12 per cent described their employer as “very supportive.”
- at the same time, 65 per cent of respondents with arthritis say canadian employers do not provide sufficient support.
“we need to pay attention to this because it affects people’s quality of life. it affects costs on the healthcare system. it affects people’s ability to be productive members of society,” lavers-sailly says.
she continues, “we need to bridge the gap between reality and perception. as long as perception is underestimating the impact of arthritis, we are not funding it, we’re not accommodating it, we’re not looking at treatments.”
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taylor has to cope with the reactions of people who don’t understand her disability. she went to disney world on her honeymoon and rented a scooter for the trip because she couldn’t walk far. “i was very self-conscious of all these people looking at me,” she says. when she shares her diagnosis, people are often confused.
“there is definitely some empathy of, ‘well, i’m really sorry to hear that,’ but i think a lot of people don’t really know how to respond. they expect their grandma to have arthritis. they don’t expect me necessarily to have it.”
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