Finding strength and solidarity in shared experience
Navigating a chronic illness diagnosis or living with a disability as a young person can be challenging, overwhelming, and at times, isolating. While everyone’s story is unique, there is strength and solidarity to be found in shared experience.
A new podcast created by four young people from the Chronic Illness Peer Support (ChIPS) program at Sydney Children’s Hospitals Network (SCHN), Chronic Conundrums hopes to lend a helping hand in navigating the challenges that come with chronic illness and disability diagnoses for young people.
Shedding light on their own stories and lived experience, anchors Joel Brookes and Lani Puse and writers Charlie Moten and Charlotte McKenzie, create space for conversations on a range of experiences, from diagnoses and hospitalisations through to treatment and health care transition services.
“I was diagnosed with Lupus in 2019 and like most chronic conditions, the diagnosis journey was rocky. I experienced a variety of symptoms including severe joint pain and fatigue and while my condition has since been stable, I’m constantly learning and adapting to living with a chronic condition,” Lani said.
Charlie shares a similar experience.
“I was first diagnosed with drug-resistant epilepsy when I was 10 and I have recently been diagnosed with Functional Neurological Disorder (FND) as well. As a result of my chronic illness, I have lost my ability to go outside on my own, which inhibits my independence and causes disruptions to my daily routine,” Charlie said.
Chronic Conundrums invites both those with lived experience and without to listen and learn, aiming to create a platform for youth health advocacy and education in the wider community.
“The main thing I felt lacked when I was diagnosed as a 15-year-old was representation in mainstream media – something I feel is essential to support young people going through this experience. Naturally, I wanted to create a safe space of authenticity and genuine support to show that this experience is difficult, but we always get through it,” Lani said.
“We wanted the episodes to feel like you’re at a dinner table talking with your friends about the complexities of chronic illness, but also to be a resource that can accompany treatment and support people through the diagnostic experience,” added Charlotte.
In creating the podcast, the team came to recognise that while unique, in many ways their experiences were collective, and hope sharing their experiences will comfort other young people navigating similar feelings and situations.
“I was under the impression for most of my life that I was alone in my experiences and that no one could possibly be feeling what I felt, but later on, I got to know more people with chronic illness and came to the reassuring conclusion that the experience and that emotions that go along with it were universal among that environment and demographic,” Joel said.
“Being able to be part of a larger collective was so healthy for me, and that’s my hope for other young people who listen to the podcast.”
With episode one launched in October, Chronic Conundrums is already helping to make a difference.
“Ultimately, we aspire for people to embrace their identity as a person with chronic illness or disability and want to encourage open, authentic discussion in the public space, diminishing any medical illness taboo,” Charlotte said.
The Chronic Conundrums podcast was funded by a Youth Grant from the NSW Department of Communities and Justice's Youth Opportunities Program, with the support of Sydney Children's Hospitals Foundation (SCHF). Thanks to the SCHN Youth & Transition team for their unwavering support in making the podcast a reality, Dr. Adam Hulbert and UNSW for their recording and post-production assistance, Ethan Puse for the incredible podcast music, and Sweeney Interpreting for their invaluable interpreting services.