Alicia's story

Alicia loves to dance and like most 11-year-olds, gym class was a school highlight … until it wasn’t. No one likes sitting on the sidelines watching friends have fun, but that’s where Alicia found herself.

Arthritis showed up without warning, striking Alicia during a family trip to Africa. What started as a limp and ankle pain, soon became a daily struggle, even after returning home and seeking medical care. In 2023, Alicia was diagnosed with juvenile idiopathic arthritis (JIA) and began a variety of treatments, hoping for one to work. She asked a lot of questions: “Will I be able to continue walking?” “Will the pain eventually stop?”

More and more, Alicia has had to miss out on physical activities with her friends. A child who loved to dance more than anything, she can no longer move the way she wants. According to her mother, she tries to dance all the time, but unfortunately, the pain in her ankles and wrists often gets in the way.

Her parents do their best. They encourage her with hopeful words about her great medical team and the promise of eventually finding a treatment that works. But they have their own fears and questions, deeply worried about their daughter. Like any loving parents, they try to protect her from getting hurt — a little too much, according to Alicia. She just wants to be a regular kid who can play freely, but arthritis has stolen that from her childhood.

While many of Alicia’s peers don’t understand her limitations, she’s discovered one place where she can be herself — an Arthritis Society Canada summer camp just for kids living with arthritis where her needs can be accommodated. There, she isn’t alone in her pain but sees that there are many kids in Canada just like her, each with their own unique journeys with arthritis.

Anna's story

After years enduring lower back pain that radiated down to their feet, and bouncing between specialists, Anna was diagnosed with axial spondyloarthritis at age 20.

As a young non-binary, bisexual person who's South Asian, Anna often feels misunderstood, especially living with arthritis. “People say, ‘Oh, I thought arthritis was an old person's disease.’ It’s confusing for people,” shares Anna. “I feel like I'm often a representative for different groups just by being me.”

Living with chronic pain and the debilitating impact of arthritis hits hard. “It affects every part of my life,” says Anna. “My whole day is centred around managing my pain. I have to rest, take longer to do tasks and find adaptable ways to do things. I pretty much use a cane full time. If my arthritis is flaring up, I might use a walker. That was difficult to accept.”

Everything from daily chores to hygiene and self-care routines requires accommodation. Some days, Anna must choose between washing their hair or body, because doing both will cause too much pain.

It’s been lonely and isolating navigating arthritis, affecting Anna’s mental health. Like most young people, Anna’s social life is important to them. But arthritis is stealing that too. “I've lost a lot of friends and lost a lot of contact with family because I can't participate in events or social situations,” says Anna.

Dave's story

As someone who lived a life consisting of hobbies like water skiing and scuba diving, Dave enjoyed activities that were often hard on his body. As a very active person, Dave developed an overwhelming sense of fear when he began experiencing muscle aches and pains. His life took a devastating turn when he was diagnosed with osteoarthritis.

The impact of the disease was rapid and significant, Dave explains, “it manifests unbelievably quick from being mild discomfort – something that puts a damper on your day – to where I am now, completely debilitated.”

He saw his life change faster than he could have imagined, shocked as his ability to do regular daily tasks evaporated. Dave went from working full-time in physically demanding industries to not being able to work at all. He can barely get up and down stairs or into a car.

After a lifetime of hard work, arthritis has stripped his golden years of the lifestyle Dave imagined living. As his mobility continues to slip away, he feels as though he’s losing a battle. “I don’t know why I have to live like this,” he says. The frustration is unimaginable and exhausting. “I would love to walk, but I can’t. I walk for two minutes and then I must sit down,” says Dave.

Debbie's story

Diagnosed with ankylosing spondylitis at age 21, arthritis stole the prime years of Debbie’s life. She spent her 20s and 30s extremely ill, struggling to walk and relying on a cane.

Life hasn’t gotten easier for Debbie. “Pain is all I can concentrate on,” she says. “Every day I’m in pain. I can honestly say I’m not a happy person. My family will tell you that, too. I outwardly show I’m doing well, but deep down I’m unhappy because I’m in chronic pain.”

Today, Debbie struggles with mobility issues as arthritis impacts her joints, back and neck. Arthritis has stolen her ability to work full time, forcing Debbie to reduce her work week to just 20 hours. Arthritis never devastates with just one symptom, and she must constantly adapt to her increasing health limitations.

Debbie knows that to keep going, she must keep moving. So, she pushes through the agony to do what she can, listening to her body’s needs. “I have to keep mobile, or I’ll lose what quality of life I have,” she says. “I’ve already lost some mobility, but I’m trying to keep it for as long as I can.

Diana's story

Diana had lived with constant, undiagnosed pain since her teenage years. At 33, while pregnant with her first child, the pain became unbearable. “My body felt like it was burning. I couldn't get out of bed or walk to the bathroom. I could only move my neck. I worried about how I would care for my baby,” she recalls.

Her doctor assured her the pain would subside after childbirth. However, two weeks after her daughter was born, the pain became excruciating. “I couldn't nurse or hold my baby,” she says. Debilitating pain, limited mobility, and fatigue persisted for seven months until Diana was finally diagnosed with rheumatoid arthritis.

Navigating early motherhood is challenging, but for those like Diana, dealing with rheumatoid arthritis flare-ups makes it a test of physical and mental endurance. The intense pain and inflammation made even simple tasks, like changing a diaper, feel insurmountable. This physical toll was compounded by the emotional strain of feeling inadequate in providing care for her baby.

Arthritis had stolen the joy of being a new mom. Moments of happiness were overshadowed by frustration and guilt, as Diana struggled with not being the active, engaged mother she wanted to be. The demands of her professional career added further stress, as she strove to maintain high performance.

Today, sixteen years after her diagnosis, Diana has found a way to live with rheumatoid arthritis, balancing her love of family, career, and health. Her greatest concern remains the impact on her children. “I want my girls to see their mom as strong and resilient. I want my journey to show that strength is not just physical but also about the courage to face challenges and the wisdom to seek balance. I will always have pain in my life. I accept that and work hard every day to stay grounded and accomplish all the things I set out to do. And I will.”

Jayna & Dina’s story

Jayna’s childhood should have been filled with playdates, after-school activities, and fun family memories. Instead, it was marked by ER visits, persistent fevers, mysterious symptoms, increasing pain, and countless medical appointments.

Her mother, Dina, pushed for answers when Jayna began limping, refusing to climb the stairs. At three, blood work held the answers to this invisible disease: Jayna was diagnosed with systemic juvenile idiopathic arthritis (sJIA), beginning a heart-rending medical journey. 

"A needle every day for a three-year-old," Dina recalls. "It was painful for her and left us in tears most nights, knowing we were the ones hurting her when all we wanted to do was take her pain away." 

The family avoided social events and crowded spaces to protect Jayna’s immunocompromised health. Dina was consumed with worry and learning more about sJIA. “We never knew what would trigger a flare up in Jayna,” she shares. “I became socially anxious as well.” Arthritis doesn’t steal from just one person; the whole family is impacted. 

Unable to control sJIA, Jayna faced life-threatening complications and her health continued to decline.  In 2019, Dina was told Jayna might only have two years left to live due to respiratory issues. Confused and heartbroken, they contemplated palliative care. Yet, after a touch-and-go bone marrow transplant in 2020, Jayna began to improve. 

"Jayna is still monitored as we never know when this sleeping dragon may wake,” Dina says. 

Gilbert's story

For a long time, Gilbert thought his pain was normal and that over-the-counter painkillers and cortisone shots were his only options. At his family’s urging, he finally sought a referral to an orthopedic surgeon who confirmed he needed both knees replaced. It was then that Gilbert realized his pain wasn't something to just push through – that if he’d seen a specialist sooner, he could have had a better outcome.

Long waitlists add to Gilbert’s pain. He is losing precious time at the job he still loves as arthritis steals more of his mobility. “I’ve been on a waitlist for my right knee for over a year now. I'll have to go through the same process again for the second knee. The pain and strain have forced me to reduce my work hours and give up some physical tasks,” says Gilbert. “I still love my job and am not ready to retire.”

Gilles's story

Arthritis was part of Gilles’ family story before he was even born. His father was diagnosed with an acute form of rheumatoid arthritis at the age of 40. The impact of the diagnosis was so severe that his family had to eventually sell their Quebec farm.  

Gilles himself was diagnosed at the age of 6 with juvenile idiopathic arthritis. Growing up, he was determined to accept his condition and live life as best as his disease would allow. For most of his adulthood, he was able to get by and enjoy an active lifestyle that included snowshoeing, hiking and a successful career in the oil and gas industry. Physical activity was helpful throughout his life in staving off the effects of arthritis, but now that he is in his 70s, he is “muddling through” instead of “doing well”. 

His weekly gym visits have dwindled, and he cannot take part in many of the activities he used to enjoy due to pain. Arthritis now affects his entire body, and coupled with his age, the disease is slowing him down significantly. Mornings are particularly hard and on some days, he simply cannot get out of bed. His youthful determination is fading now: “I do not get as much enjoyment out of life as before.” Now, Gilles finds the list of things he cannot do is much longer than what he can.

John's story

Like many teens, John was excited as high school approached. The experiences to be savored, the friendships to be built – he could barely contain his enthusiasm.

Instead, the arthritis he’d been living with since he was a Grade 4 student derailed his plans. Severe inflammation, most pronounced in his knees and ankles, meant he couldn’t even stand on his own.

“I was struggling to complete basic daily functions,” John says.

Orientation came and went without him. He was forced to drop out of every extracurricular activity he enjoyed, from soccer and hockey to ballet. When he was well enough to attend school, he required accommodation. His teachers rearranged his timetable so all his classes were on the same floor. Rest spaces were carved out for him so he could make it through the day.

Although John eventually got his arthritis under control, he couldn’t get back those lost moments.

“I felt like I had missed out on a major life event,” he recalls.

Josh's story

While many kids are thinking about what's in their lunchbox, 11-year-old Josh MacDonald is focused on whether he'll even be able to go to school — or if arthritis will win that day.

Living with arthritis at such a young age is incredibly challenging. Josh, eager to see his friends and play outside, faces an unpredictable reality every day.  Despite his resilience, it is a mental and physical pain that no child should have to endure.

"Sometimes when I wake up and my joints are sore, I don’t want to do anything. My legs ache. I just want to lie down or sit," says Josh, who was diagnosed at age 2.

For an energetic kid like Josh, it's devastating to wake up and realize that something as simple as going to school or seeing a friend is out of reach. Fragments of childhood that should be effortless, cruelly taken by arthritis.

Karam’s story

Born with an adventurous spirit, Karam never imagined arthritis could steal the life she loved.

Before her diagnosis, it was clear something was wrong. Karam would wake up stuck in one position, waiting for her stiff, painful joints to loosen. Things escalated to include fevers, hearing loss and difficulty breathing. Declining rapidly, Karam was hospitalized and diagnosed with rheumatoid vasculitis, a rare form of arthritis attacking her organs and tissue.

“My world fell apart,” says Karam. “I was horrified. I love the outdoors—hiking, skiing, scuba diving. I thought, ‘That’s it! My life is over.’”

Karam has endured a harrowing journey: a shocking cardiac arrest, intensive care, rehab with a walker, then a cane, and a slow ongoing recovery.

Arthritis has stolen more than Karam’s physical health. Unable to work for over three years, she’s experienced a huge financial hit, losing her footing on her career ladder and falling behind in the rapidly evolving IT industry. With her treatment plans, unpredictable symptoms and immune-compromised health, Karam lost the opportunity to create memories that she would have made travelling and spending time with family overseas.

Managing invisible symptoms, Karam struggles with being misunderstood. "I look normal; it’s really hard to explain,” she says. “It’s overwhelming, all-encompassing, sheer exhaustion. The pain is excruciating. I wouldn’t wish it on anyone.”

Having to rely on others for basic tasks some days leaves Karam feeling vulnerable. But she refuses to let arthritis dictate her life; adapting, Karam believes her passion for life will drive her progress. "But the reality is that my health always has to come first, something I previously took for granted,” she says.

Lacey's story

A life full of limitations and the heavy burden of arthritis — the cruel reality for Lacey Risser. Diagnosed with arthritis at just 15 months old, her life has been shaped by this chronic disease in ways most people never have to consider.

The restrictions began at a young age. Living with chronic pain and stiffness, her energy and overall well-being were harshly stolen. Her parents recall her being upset all the time, frustrated at the unfairness of her condition. It was normal for her to be late for school because she had a spiking fever and needed to sit in the bath to bring it down. As she got older, the vulnerabilities persisted, robbing her of the freedom to explore and participate in life experiences that should have been hers.

Now 30 years old, Lacey faces the daily reality of living with a body that feels far older than her years. She had to leave her full-time nursing position and shift to a casual role because she didn’t feel safe helping patients move. “Too often my range of motion just isn’t adequate,” she explains. The sense of vulnerability is ever-present, as arthritis dictates her physical capabilities and restricts her from living spontaneously, “Everything I do comes with a price in the form of pain, and I have to decide whether that thing is worth the price.” Lacey and her partner must make careful considerations for their future, ensuring their home is on one level and that the flooring within can cushion possible falls. Lacey’s exhaustion is incomprehensible.

"I grieve the healthy 'normal' life I never had,” she says.

Robert's story

Robert had thoughtfully mapped out the next steps in his career as a mechanic and trades instructor. It was a future he had taken decades to design. What he hadn’t predicted was how suddenly it would be shattered, because of arthritis.

“I was reaching the peak of my game, looking at career advancements coming until it all ended before it was supposed to,” he says. “Retirement? Gone. There was no celebration. Twenty-five years in and I had to step out the door.”

Robert’s arthritis began in his knees, but his hands soon followed. In a career where the use of one’s hands is monumental, there was no option for him. Arthritis had denied him that choice.

“It’s ironic that I spent my career using my hands and teaching people how to avoid hand injuries, and now I can’t make a fist,” Robert says. “I can't use my hands well enough or walk far enough to do my job. I’ve had to take disability. Arthritis has stolen my ability to work in my chosen career.”

Tina's story

Numerous surgeries and nearly a year spent waiting for the next one. Tina Moffatt is no stranger to the enduring agony of arthritis; she was born with hip dysplasia and began showing signs of arthritis in her 20s. Now 55, Tina has severe osteoarthritis, which “presents like that of an 80-year-old”, according to her physician.

In constant, overwhelming and jarring pain, Tina has had to give up the possibility of working, can’t spend time with her granddaughter, or even go to the grocery store without relying on the help of others. She lives with the ongoing fear of being isolated and having to depend on others to take care of her. “I feel like arthritis has robbed me of my humanity and sense of being.”

Exhaustion plagues her and the pain leaves her feeling emotionally drained – impacting her mental health, social life and relationships. “I often wake up in the middle of the night to find my pillow wet from crying in my sleep.”

After her family doctor recommended hip replacement surgery, she waited nearly a year for a date. “I hate that the solution – surgery – involves a long wait time and that I’m at the back of the line.” Now, with a date confirmed, she feels there is finally light at the end of the tunnel.

Tucker's story

"Arthritis has stolen so much from me," Tucker shares, reflecting on its profound impact on his daily life. He now relies on aids like a shower chair and kitchen stool and avoids stairs altogether. "There’s no predicting arthritis. And what surprises me is how much worse my symptoms have gotten over time."

Tucker began experiencing debilitating rheumatoid arthritis (RA) symptoms at age 21—severe swelling, excruciating pain, and relentless fatigue. It took two years, after worsening symptoms and a second blood test, for Tucker to finally receive the diagnosis he desperately needed.

Employment was impossible until Tucker started his own business. "Everything is impacted by my RA. Everyday tasks are challenging, and socializing is rare due to pain and fatigue."

"People can’t see what's going on in my body and often assume I am able-bodied," Tucker explains. Despite these challenges, Tucker runs a successful business, thanks to the support from friends, family, and the community. "I am very fortunate for their support. It keeps me motivated and able to make ends meet."

Zac's story

Zac was a star high school athlete when arthritis came for him at age 16. The diagnosis of juvenile rheumatoid arthritis was devastating.

“I was lost. It was debilitating. I couldn’t button up a shirt, put on shoes or shower. It completely changed my life.” The disease caused significant weight gain, stiffness and limited mobility.

By the time Zac accepted a sports award just a few months later, he needed a walker to cross the stage.

“I was very healthy before I got arthritis. To get sick and lose the ability to play sports, lose confidence, get bullied and ridiculed...it destroyed my teen years. I lost all my friends, I became isolated.”

Zac worked through this dark time by learning how to adopt a fitness routine that considered his limitations. As his symptoms improved, his passion pivoted his career aspirations from taking over his family’s bakery to opening a personal training studio in 2018, Forge Fitness. This journey was temporarily halted when a life-threatening complication from arthritis, Macrophage Activation Syndrome, put everything on hold in 2021. “I was given a 30% chance of survival. I thought I was going to die and began to say goodbye to my family.” Thankfully, Zac recovered, and months later, went on to open an expanded studio in 2021.

“Anything can happen at any moment. It’s important for people to realize how debilitating arthritis can be and that people need support.”