what it feels like: ‘attitude is everything’ living with osteoarthritis
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carla heggie biked for 10 years with a specialized touring bike, hiked on a glacier in iceland and hiked up the side of a volcano in new zealand – all while living with osteoarthritis.
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carla heggie has had more than 30 surgeries through the years because of severe osteoarthritis. she’s managed through the pain and mobility hurdles that have become commonplace in her life, along with a dedicated healthcare team and orthopaedic braces that could make for an “interesting museum” if she’d kept them all.
osteoarthritis is the most common form of arthritis that happens when the protective cartilage that cushions the ends of your bones wears down over time, damaging your joints and getting worse over time.
but at a point in life when most people put things on cruise control, she’s in full throttle. in her early retirement, after 28 years in information access and privacy policy with the provincial government in nova scotia, carla is teaching full-time in the faculty of computer science at the university of dalhousie. she’s also working on her master of laws degree across the street at the schulich school of law at dalhousie with a thesis on privacy and artificial intelligence. she sits on a stool at her office desk for comfort, because her spine is fused in two spots, and she walks, sometimes using a cane or walker, or regular crutches if she “breaks a toe or something.”
to say that she’s accomplished and ambitious would be an understatement. carla, who lives outside of halifax in upper tantallon, sets an example for others with osteoarthritis to not let it hold you back, and is proudly a part of arthritis society canada’s faces of arthritis campaign.
“people look at me and say, ‘what makes you think you can do that?’ my reaction is, ‘what makes you think i couldn’t? i can’t do something until i try,” carla says of her approach to life with osteoarthritis.
“attitude is everything. my attitude is spelled with capital letters.”
growing up with osteoarthritis
with any form of arthritis, every person experiences it differently. but carla is truly an anomaly, she’s quick to point out. typical onset for osteoarthritis happens in your late 40s and 50s and affects more than four million canadians, or about one in every seven adults, according to the arthritis society canada. the charity commissioned its “burden of osteoarthritis in canada” report in 2021 to look at the impact of osteoarthritis on canada and patients and their families. while the prevalence of osteoarthritis rises with age, nearly one-third of people report being diagnosed before age 45.
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carla was just a kid when she started experiencing falls, likely from muscle weakness and the unsteadiness that follows.
“i remember my friends’ mothers putting band-aids on my skinned knees, saying ‘child, when are you going to stop falling?’” she says, adding her falls didn’t slow her down. “i was always very athletic, even through my teens, but i would fall a lot. pain, discomfort and my knee would lock.”
appointments with her doctor weren’t helpful, where she was told, “you’re making it up,” she recalls. “they finally realized there was something wrong when my knee turned in and i couldn’t really walk. i had my first knee surgery when i was 18 years old.”
the procedure revealed a diagnosis that came as a shock to the young woman and her family, mainly because osteoarthritis is perceived as an older person’s disease. carla says that it is rare for osteoarthritis to start manifesting at around age 11, in her case, but the genetic disease happens to one female in her family in every generation.
“i was told, ‘you have osteoarthritis. there is no cure. there will be no cure in your lifetime. you have to learn how to live with it,’” she says, “so i was told you’ve got an old person’s disease that you are going to live with the rest of your life and there’s not much they can really do about it at that point.”
acceptance and perseverance through osteoarthritis
instead of letting the blow reduce her to tears and self-pity, she reacted with characteristic determination that’s carried her through all the surgeries, therapies and drugs: “how do i do it? how am i going to deal with this?”
she had her second knee surgery when she was 19, and lucked out with the involvement of a young resident who was pushing for change and innovation in orthopedic treatment. dr. bill stanish, one of the university of dalhousie’s most outstanding athletes in the 1960s (later inducted into the nova scotia sports hall of fame) was starting up a new field of orthopedic medicine called sports medicine. he founded the sports medicine clinic in 1976 to rehabilitate injured athletes and has worked with canada’s elite athletes at several olympics as chief medical officer. he’s currently a professor of biomedical engineering at the university of dalhousie – and carla’s main specialist for decades.
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at the time, dr. stanish recognized that carla was young, strong and athletic and he wanted to work on new physiotherapy strategies with her. when carla left her surgeon’s practice at age 23, she got a referral to dr. stanish who took her on as a patient, vowing to keep her walking for the rest of her life as long as he was able to do so. she had been told she would be in a wheelchair by her mid-40s, which hasn’t happened.
“my life, if i hadn’t met him, would have been totally different.”
carla heggie doesn’t want people with osteoarthritis to retreat into despair. as she puts it, “it’s not a death sentence.”
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his focus has also been not doing surgery unless necessary and prevention with physiotherapy to help her stay active and reduce joint pain and stiffness. carla has also tried newly developed braces to stabilize and support her walking and moving, and says she was one of the first in canada to take the medication celebrex, the brand for celecoxib, for symptom relief of inflammation, stiffness and pain. it’s one she continues to take.
“i had a cadaverous implant in my knee for eight years before it started to fall apart. i got a hockey puck of their cartilage from their knee. now half my knee is metallic, the other half is integrated with my rest of my joint,” she explains, adding her numerous surgeries are not only for joint replacements but complete reconstruction of her left shoulder from degeneration and a particularly bad fall on campus. she has a high threshold for pain.
“at one point i had five surgeries in three years. i fell and i snapped my foot, breaking every bone except for one. and then i broke that about three years ago, so i had screws, pins and i think 36 staples to hold my foot together,” she says. “i don’t, but if i wanted to, i could wear stilettos.”
however, the real beauty of having an amazing team of surgeons, physiotherapists and pharmacists is the support and encouragement. as she says of dr. stanish, “he never told me i couldn’t do anything.”
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managing osteoarthritis and living life to the fullest
that’s how carla pursued her love of active travel. she biked for 10 years with a specialized touring bike, hiked on a glacier in iceland and hiked up the side of a volcano in new zealand. and there’s more to come! her drive also comes down to mindset and mental fortitude: “i don’t know anything but living as an adult with arthritis. i don’t know what healthy feels like.” her reality is having a body that attacks itself, where getting the flu will put her into respiratory distress.
her immune system is compromised. when she contracted covid-19 for the second time after christmas, on top of a viral cold that was going around, she never quite recovered. now she has a second chronic disease to contend with: polymyalgia rheumatica, an inflammatory disorder that causes muscle pain and stiffness. she has joint and muscle trouble.
the upside, she says, is that she has got the management of chronic disease down pat. “i tend not to sweat the small stuff.”
“part of it too, is learning to live with it,” she says of advice for others with osteoarthritis. “you have to listen. you have to do the physiotherapy. you have to take the meds when you need to take the meds. you have to do what it is you need to do.”
she’s also committed to her work as a patient advocate, patient partner and patient advisor. she acts as a peer reviewer for the canadian institutes of health research for patient input on grant applications for patient-oriented research. the aim is to make sure that the patient voice is heard.
carla clearly doesn’t want people with the diagnosis to retreat into despair. as she puts it, “it’s not a death sentence. you are not going to be disabled for the rest of your life. do the work with the physiotherapists, even if it hurts. because it’s going to hurt worse if you don’t. you can live with it, even if you’re in a wheelchair.”
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what would you do if you were told that you’d never run again when you were 17 years old?
every year, in good weather in a safe place, carla gives it a try.
“the furthest i’ve got is about four steps before i fall and i think, ‘ok, i guess i can’t run this year. we’ll try again next year.’”
for more information and support services for osteoarthritis, visit arthritis society canada.
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