Navigating her new normal: Kaajal's story

A portrait of Kaajal looking at the camera, wearing a blue buttoned shirt.

Kaajal once envisioned a future where her hands would be a source of soothing relief through massage therapy. However, arthritis disrupted this vision, propelling her into a journey of resilience and adaptation.  

At age 15, Kaajal began to experience wrist and arm pain and noticed stiffness and weakness creeping into her hands. Initially manifesting in her left hand, it showed up in simple movements like opening a water bottle but didn’t affect her schoolwork. Yet, as Kaajal began a part-time job after school, the impact became more pronounced. She recalls the difficulty of closing shop alone at her place of work when her hand seized up, and she needed a family member to help at the end of her shift. 

But she didn’t yet know it was arthritis. Doctors misdiagnosed her symptoms as carpal tunnel, but the symptoms continued to escalate. “Suddenly, I was unable to move my hand. It was swollen, numb, tingly, cold and pale,” Kaajal recounts. “I was told my pain wasn’t treatable and I would just have to wait for it to go away on its own.” 

Yet, as one symptom faded, another emerged. 

“I developed a swollen, red lump on one of my hand joints that was hot to touch,” says Kaajal. “I went to my local clinic, and they immediately thought it was arthritis.” She remembers the doctor acting alarmed at what she thought was a rare occurrence in a child.  

This led to a series of specialist appointments, numerous tests and eventual referral to BC Children’s Hospital, where Kaajal was diagnosed with Polyarticular-Rheumatoid Factor Positive Juvenile Arthritis at the age of sixteen. 

“This is a kind of arthritis that is in multiple joints; it also means I test positive for rheumatoid arthritis,” says Kaajal. “I remember being very emotional and upset by the diagnosis because I was only sixteen.” 

The diagnosis came as a shock to her and her family, challenging their preconceived notion that arthritis primarily affected the elderly. But they rallied around her, learning all they could about arthritis and what this new diagnosis meant for Kaajal moving forward – what her life could look like. They became active advocates in their South Asian community, each educating their peers on the reality of arthritis and how it can impact different ages. Her family participated in community fundraising events, raising money and awareness for Arthritis Society Canada. 

Kaajal found a peer who also lived with arthritis. “I realized then that I wasn't alone and that this doesn't have to be a negative thing in my life,” says Kaajal. “It was nice knowing that there was someone at my school, in my grade, who was going through a similar thing to me. Someone who understood what I was going through.”  

This newfound sense of community allowed Kaajal to navigate her diagnosis with resilience and acceptance. But it didn’t make it easier. 

Kaajal says her flare-ups are just plain hard, and she never knows when they’re going to show up. The agony of arthritis is more than the pain. “I feel kind of stuck when I have to rely on everybody else to do things for me,” Kaajal quietly shrugs. “It’s horrible having to rely on someone else to take care of you.” 

She knows the crushing reality of losing the ability to perform basic tasks like brushing her teeth and hair.  She experienced humiliating skepticism when her employer made her show her swollen hands and doctors’ notes as proof of why she couldn’t work her waitressing shift.  

“When my arthritis flares up, it hits my hands and wrists. They balloon up, and I’m unable to grip anything. Not a toothbrush, a pen, or a fork,” shares Kaajal. “I need help to wash and tie up my own hair.”  

But Kaajal refuses to wallow in self-pity. “To me, arthritis is a new way of living,” shares Kaajal. “This is something I will have for the rest of my life, and it means adjusting to my new normal when my flare-ups do occur.” 

Kaajal found a new career vision and is nearing the end of her degree specializing in Human Resources. This pivot led her back to Arthritis Society Canada through a school project that came to mean a lot to her. “I gained a lot of insight into how non-profits work and the impact they have on their communities. I see myself working in this field.”  

This project opened the door to becoming more vocal about her own arthritis journey and being an advocate for arthritis awareness. 

Now, at age 24, Kaajal says, “If I can help someone else have a better experience than I did at 15 and 16, then I want to keep advocating for more awareness and better care.”