Mother of two embraces her diagnosis to help others

Joanne Marcano posing at a scientific conference

When Joanne Marcano's ankle started hurting when she was seven years old, doctors struggled to identify her pain. Forty years later, she recalls tough years in and out of the hospital, which caused her to miss out on many months of elementary school.

"I was so sick, growing up," says the Toronto resident, who was diagnosed with juvenile arthritis at age seven and needed two hip surgeries by the time she was in her early twenties.

Despite her pain, she kept her diagnosis to herself, even as she started working.

"I never used it as an excuse, period. I'd outwalk my friends when we were out and about and never demanded special treatment. For the longest time, I'd limp and not use a cane or walker," she says. "As a Black woman, I was entering the workforce trying to keep my head down. I feared sharing my disability would push me to the outside. I was apprehensive about missing out on opportunities by disclosing it."

A shift occurred in her late thirties, as she became pregnant — something she had initially feared might never happen for many reasons including: fear of infertility or complications due to medication, the loss of an ovary and having endometriosis.

"I stopped hiding my situation and began identifying as a disabled person," says Joanne. "Over time I learned how to best introduce myself and to own my uniqueness. It was a big adaptation."

Paying it forward

Today, Joanne proudly helps adults living with disabilities and their caregivers navigate the healthcare system and connect them to appropriate support programs. Her mother was a passionate advocate for Joanne growing up, and she believes her mother's example is what inspired her to help herself, and others. Acceptance of her own disability was also a factor in her desire to do community work. Her condition grants her insider knowledge, and she knows where the gaps are.

As a Black woman, Joanne sees a need for more support groups across Canada tailored to the needs of Black, Indigenous and racialized groups living with arthritis.

"I remember seeing a social media post from Arthritis Society Canada and thinking: this might be my first time seeing a Black woman sharing her journey with arthritis," she says. "Representation matters and I didn't have anyone I could relate to growing up. I wish I had."

As a mother of two, Joanne takes pride in raising her children with a healthy streak of empathy. Twenty per cent of the children at her daughters' school live with disabilities or developmental challenges, she explains.

"They are exposed to these realities and have really learned to be compassionate," she says.

"They're also at an age where they somewhat understand my limitations and will suggest ways for us to play together that are considerate for me."

By sharing her story, raising empathetic children and being a community ally and advocate, Joanne has made her invisible disease visible.

"Times have changed, now. Inclusivity efforts and workplace accommodations are more common," she says. Joanne and others like her are creating a more welcoming, accessible and supportive environment for people growing up with arthritis.

If you or a loved one needs information or support, we invite you to connect with our Arthritis Line.