You Are Your Best Advocate

For the first decade of her life, Saada Branker enjoyed a normal, active childhood in Montreal. But after a year of unexplained pain in her shoulders, hands, and feet, her doctor diagnosed her with polyarticular juvenile rheumatoid arthritis, now called juvenile idiopathic arthritis (JIA), when she was 12.

That news 40 years ago surprised Branker’s parents. It was uncommon then — as it is today — to hear of children with arthritis. By the time Branker entered high school, her condition was severe enough to often leave her stuck on the sidelines.

“The toughest part was sitting in gym class, watching the students do the things that I used to do,” says Branker, 51, a freelance writer and editor in Toronto. “I was sitting on this skinny bench on the side of the gym for 40 minutes, watching them do the things I couldn’t do.”

Branker disliked feeling like an outcast so much that she spent years covering up her disease. Only several dozen American children under 16 out of 100,000 have it. The type Branker had is rarer still. Polyarticular means the disease affects five or more big and small joints, such as in the ankles and feet.

As Branker approached adulthood, her JIA became classified as rheumatoid arthritis (RA). The condition took a toll not just on Branker’s body but on her mental well-being. “I started to feel very self-conscious, I felt different. In high school, you don’t want to be different, you want to blend in.”

Letting Go of a Secret

The discomfort seeped into other parts of Branker’s life. It followed her to Ryerson University’s journalism program in Toronto, where she found the transition to college “life-altering and stressful” with RA. “Even though I was looking forward to it, it impacted me physically,” she says.

The pain and stiffness from RA slowly made impossible the most routine of daily tasks. She could no longer twist her dreadlocks or drive her friends downtown. At her most pessimistic point, Branker simply assumed that she’d eventually lose her mobility and independence.

Branker started her first job out of college as a program assistant at the Canadian Broadcasting Corporation just after having surgery on her elbow because of RA. Her duties included lifting and moving items, something her doctor advised her to avoid. But Branker was reluctant to confide to her employer.

“I didn’t want anyone to know,” she says. “My challenge all the time was, ‘How do I look able-bodied like everyone else?’ What was more important to me at the time was fitting in and doing the job.”

In fact, Branker kept her illness a secret — until she couldn’t. One morning in June 2001, she realized that she couldn’t put on her clothes.

“When I went to get dressed, I couldn’t raise my arms to get the blouse on. I had to call my roommate to help dress me. That was the morning I decided I’m just going to tell everyone at work that I’ve been struggling with this disease.”

Branker switched from blending in to speaking up. She also began to see a social worker to learn how to manage a lifelong illness mentally. “Through that, I developed this understanding that, not only do I need to talk about it, but people need to hear about this disease.”

Branker learned how to lean on others. “People were so kind and would help. But it was also hard for me to accept. It always took a chunk out of me.”

A Shift in Mindset

Branker used to fear for her future as her disease progressed. But she now realizes that the best path is to accept the unknown.

“Losing mobility is something that we have to be real with ourselves about. When we lose the mobility, it doesn’t mean it’s gone forever. But at that moment, you have to mourn the loss.”

Branker urges other with RA to be kind to themselves and to make their health their top priority.

With her newfound self-advocacy, Branker acts as a team player for her treatment. She brings a list of questions to doctors’ appointments, does her research, and speaks up for therapy that she thinks may work best for her lifestyle.

“All of that started to become comfortable and then normal for me. I started looking at [the physicians] as my team and not just doctors who teach me what to do. That shift helped empower me,” she says.

Branker also takes advantage of assistive devices, including tools to help put on her socks or to grip cooking items.

For each task she can’t finish, Branker is determined to adapt and to gain a new perspective.

”Instead of looking at it as ‘I can’t do it, it’s gone forever,’ I think, ‘What can I do in place of that?’ ” she says. You “don’t have to keep walking around, thinking ‘I got to act like everyone else and act like I can do this’ when on some days, you can’t, and that’s OK.”