Trish Barbato, president and CEO of Arthritis Society Canada, once lived an active life. She traveled frequently, especially to her home country of Italy, worked out six days a week, and enjoyed hiking and golf.
But everything changed suddenly. “It was totally fine one day and the next day my hip hurt and within a couple of weeks, I was limping, and I couldn’t walk properly,” she said.
Initially diagnosed with bone marrow edema, a condition involving fluid accumulation and damage in the bone beneath joints, Barbato was advised to rest and wait. However, her condition worsened, and she was eventually diagnosed with end-stage osteoarthritis.
This diagnosis drastically altered her life. “My husband and I had booked a two-and-a-half, almost three-week trip to Italy last fall, very excited about it, planned long in advance and two days before, basically the doctor that I saw said, ‘You can’t really go; you’re not fit to go on this trip,’” she recalled.
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A New Reality: Pain and Limited Mobility
For the past nine months, Barbato has relied on assistive devices like a knee scooter, elbow crutches, regular crutches, and a cane to get around. “I can’t walk very far without them, so that has been so interesting to be fully able-bodied and then suddenly be really disabled,” she said.
The chronic pain associated with osteoarthritis has been a significant challenge. “It’s very draining. If you have so much energy in a day, if you’re in pain all the time, you have a lot less,” she explained. This leaves her with limited energy for daily activities, making it difficult to maintain a positive outlook.
Barbato’s active lifestyle has been upended. “I feel like I’m almost sedentary, which is so unlike me,” she said. Despite these changes, her personality remains unchanged. She still loves being active and has adapted by finding new activities, such as swimming, that suit her current abilities.
Adjusting to life with osteoarthritis hasn’t been easy. “For me, you just feel really sorry for yourself. You know, I literally one day said, ‘Okay, you can feel sorry for yourself until noon. Do whatever you need to do, like cry, do whatever you need to do. But at noon, we got to try and pick ourselves up and keep going.’”
Her condition has also impacted her husband, as they can no longer enjoy activities like golfing together. “[He] misses golfing with me and I miss golfing with him,” she said. While she sometimes joins him in a cart, it’s not the same.
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The Challenge of Planning Ahead
Osteoarthritis has made planning for the future difficult. Simple tasks, like attending a baseball game or traveling, now require extensive logistical planning. “I’m going to have my crutches, and I’m going to try to walk down the stairs and then what do I do with my crutches?,” she said.
Even work trips have become daunting. “I remember I had to go on a work trip, and I had to literally sit and was like, ‘Okay, how am I going to get to the airport? Once I get to the airport, I have a bag, and I have my crutches. How can I get from the door of the taxi to inside the building?’” she said. These challenges have led her to avoid going out when possible, as everything has become “too hard to think about.”
The loss of independence has been particularly difficult for Barbato, who describes herself as an extremely independent person. “I’m an extremely independent person and not only do I need help, but I also can’t help others … it’s not just that you can’t do things. It’s that you can’t be of much help to other people, so that’s really hard.”
Her experience has given her a deeper understanding of the challenges faced by people with disabilities. “I have so much empathy for people who don’t have that mobility and it’s a lot more than you think,” she said. She finds gratitude in the small things that make living with osteoarthritis easier, such as having a job that allows her to work remotely.
Despite the difficulties, Barbato remains positive. “For me, it’s always thinking about people who are much worse off, like this is impacting their income or it’s impacting their livelihood,” she said. She considers herself fortunate and uses her knowledge of the disease to advocate for herself and others.
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For those newly diagnosed with arthritis, Barbato advises reaching out for resources, exploring therapies, and focusing on what the body can still do. “It’s not letting the things you can’t do stop you from doing the things you can do and finding what those things are,” she said. While acknowledging the challenges, she emphasizes the importance of self-advocacy and finding ways to adapt and thrive.
Impact on Relationships and Daily Life
Barbato’s condition has affected her ability to participate in cherished activities with loved ones. Her annual mother-daughter trip was canceled because she could no longer assist with luggage, a task she once welcomed. She reflects on the potential permanence of this loss, noting the uncertainty of her mother’s remaining time. Her husband has also been impacted, as shared activities like golfing and outdoor summer pursuits have ceased. While she occasionally joins him in a cart to watch, she acknowledges it’s not the same experience.
The loss of independence extends beyond personal activities to helping others, which Barbato finds particularly challenging. She avoids going out when possible, as planning and executing even simple outings has become overwhelming. Her sudden onset of osteoarthritis has prompted her to consider the broader implications for those without support systems or disability insurance, emphasizing the financial and emotional toll such conditions can have on individuals and their livelihoods.
Despite these challenges, Barbato focuses on gratitude and finding silver linings. She advocates for self-education, reaching out to organizations like Arthritis Society Canada, and exploring therapies to adapt to new limitations. Her advice to others facing similar diagnoses is to concentrate on what their bodies can still do, rather than what they can’t, and to actively advocate for themselves in handling their condition.
