Take a Pain Check
Creating a Community for Youth with Arthritis
Imagine getting diagnosed with an incurable illness at age 13. Then imagine desperately searching for a support system and finding nothing.
That was Natasha Trehan’s initial experience after receiving her juvenile idiopathic arthritis diagnosis.
“I felt alone and wanted to know that other kids my age were dealing with the same things as me,” Trehan said.
Around 6,000 children in Canada, under the age of 15, live with inflammatory joint diseases, which cause pain, swelling and stiffness. There is no cure and numbers are on the rise.
Rather than dealing with her disease alone, Trehan built a community for youth with chronic illnesses.
“It started as an Instagram account that grew into the Take a Pain Check podcast. Today, it’s so much more than a podcast,” Trehan said.
We sat down with the now 18-year-old, who is also a member of Arthritis Research Canada’s volunteer Patient Advisory Board, to talk about her journey to create a unique support system for young people struggling with rheumatic illnesses.
How did you come up with the name “Take a Pain Check”?
When you have arthritis, sometimes you might have something planned on a specific day, but need to take a rain check due to pain, fatigue or having a flare. I think people with arthritis can really relate to this experience. There was a lot of brainstorming for the name, but this is the one that stuck.
What kind of guests do you have on the podcast?
Take a Pain Check has now aired more than 30 episodes involving guests with arthritis, parents of children with arthritis, physicians, allies and more. The episodes cover a broad range of issues that matter to youth navigating the world of chronic illness – like relationships, school, advocacy and much more.
I’ve had the opportunity to interview some interesting and inspiring people like Spencer Hamilton, a professional skateboarder who lives with ankylosing spondylitis.
I’ve spoken to twins living with juvenile arthritis and have had Michael Kuluva on the show. He’s an American fashion designer and founder of the New York Fashion Week label, Tumbler and Tipsy. He has rheumatoid arthritis.
We had a Miami-based rheumatologist named Dr. Monic Shah on the podcast. She’s on a reality show called Family Karma on Bravo. We talked about entertainment and her experience of being a rheumatologist on a reality TV show.
I’ve also interviewed a rheumatologist from the Netherlands. It was interesting to see how arthritis care differs between countries.
Who tunes into the podcast?
Most of our viewers/listeners are between ages 13 and 27 and 45 to 59. A lot of researchers and rheumatologists have also approached me because they want to hear what young people with arthritis have to say. I recently presented an abstract about the podcast at the American College of Rheumatology’s annual meeting, ACR Convergence.
Who do you hope the podcast helps?
I really hope it makes a difference in the lives of young people dealing with chronic illnesses. There is definitely stigma around teenagers having arthritis. People are dismissive and don’t think it can happen to young people. I also want to inspire youth diagnosed with these conditions and make them feel that they can still achieve their dreams. I want them to know there is hope even when they feel alone.
Do you think your podcast has created a community?
It has definitely created an inclusive community. When I was 13, I didn’t know that there were other people living with my disease. Take a Pain Check connects youth in North America who have rheumatic diseases, as well as health care professionals, loved ones and friends of people with arthritis, public figures and more.
Where do you hope to take the podcast now?
I want the podcast to be a resource that is distributed and advertised in every rheumatology clinic and hospital in North America. When someone is diagnosed, I want Take a Pain Check to be their support system. Take a Pain Check has recently started an ambassador program to engage youth to be involved with outreach and marketing. We also have a medical advisory board and executive team. We have a growing social media community and we encourage people to submit posts to our blog.