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Natasha Trehan still shudders when she thinks back to her Grade 8 year — when she first started experiencing painful symptoms and didn't know what was happening.
"I couldn't do things I loved, like pick up a tennis racket or play the piano," recalls the now 19-year-old, who suddenly felt a throbbing pain in her wrists and arms.
For months, she thought she had sprained her hands. When the pain travelled down to her feet and ankles, she knew something was seriously wrong.
It wasn't until a classmate finally urged her to see a doctor that Trehan started on the path toward her eventual diagnosis.
Trehan, like 6,000 Canadians under age 15, had Juvenile Idiopathic Arthritis, or JIA — an incurable inflammatory disease that causes pain, swelling and stiffness in joints.
Diagnosed at 13
Brianne Chou, the classmate who urged Trehan to seek a doctor for her pain, said her friend could no longer hold a pencil. Chou had to take notes for her in class.
"I think it's so important that we get away from the idea that only old people get arthritis, because that is the most common misconception," said Chou.
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By the time Trehan received the arthritis diagnosis, an MRI revealed she already had extensive damage to her joints and she began a long road of medications and therapy to manage her pain.
"Being in my early teen years and navigating an already confusing time in my life, I felt so alone and did not know anyone who could possibly understand what I was going through," said Trehan.
"I didn't believe that there were other people living with my disease."
Managing homework and chronic illness
Her diagnosis meant Trehan's high school experience was not what she had expected. Instead of tennis practice, her extracurricular hours were filled with doctor visits and meetings with the school to talk about accommodations.
Trehan said she often felt judged and dismissed by teachers for not looking sick enough to require extra time and support, instead relying heavily on friends who tried but sometimes struggled to understand her illness.
"There was a bit of a learning curve for all of us because there's so little awareness of Juvenile Idiopathic Arthritis," said Rahul Vivekanandan, who would sit with Trehan for hours while she received therapeutic infusions at the hospital to alleviate her pain.
How to Take a Pain Check
In March 2021, Trehan was finishing her last year of high school during the COVID-19 pandemic when she decided to launch a podcast and online platform for youth with rheumatic diseases and chronic illnesses.
"I wanted to make sure other young people would never have the experience I had, and feel alone."
She recorded the first episode from her bedroom.
She hoped it would strike a chord with others who know what it's like to navigate life as a young person with an invisible, chronic disease, and particularly the challenge of seeming fine one day then struggling with simple things like lifting a suitcase the next.
"When you have arthritis, sometimes you may have to cancel plans or take a rain check due to a flare," explained Trehan, who named her platform Take a Pain Check.
In a matter of months Trehan had interviewed youth with arthritis from around the world and began creating a network of young people with rheumatoid diseases — such as Naomi Abrahams, a second-year PhD student at the University of Ottawa who said much of the content resonated with her own experience.
"I was kind of thrust into adult care," said Abrahams, who was diagnosed at 18 and lives with chronic pain throughout her body.
"I can have days with minimal to no pain, and on those days I can almost forget my arthritis. But when pain is present it can dictate how my day plays out."
Abrahams said she was amazed to find so many other young adults like her through Trehan's platform.
New school, new community
This past fall, Trehan moved to Ottawa to pursue biomedical sciences at the University of Ottawa. She plans to continue her podcast and build a network of support — whether it's through health-care professionals or the friendships that give her courage to keep going.
"My best friends have stood by me every step of the way. On days that I was in pain or just wanted to give up, they encouraged me to believe in myself," said Trehan.
"The support that I got from them, and the chronic illness community, gave me the confidence to self-advocate and become a voice for others."