Over the last couple months I've had two really wonderful opportunities to participate in some advocacy projects for chronic illness and disability. One is a written/photographed interview for As We Are, and the other an audio interview for In Sickness + In health. I wanted to document them here for posterity, and to share both of these amazing projects. They go beyond looking at the illness itself, and dig deep into what it's like to live with chronic illness and disability in a world that often wants to sweep people like me under the rug.
As We Are
Back in September a mutual friend put me in touch with an amazing young woman, Zoya Jiwa who has started a project called As We Are: style strategies to navigate health conditions. Zoya is a university student who has been living with chronic illness since she was a teenager, and started this project as a way to talk about how style and fashion can be supportive tools when living with disability, and chronic and/or mental illness. She's also been kicking major advocacy butt - she just did a TEDx talk at my alma mater, Simon Fraser University, won the university's Terry Fox award for community engagement, and was named one of this year's Fellows for both RADIUS and The Next Big Thing Foundation! You can tell she's a passionate advocate for both herself and the larger chronic illness community.
I've loved reading the other people's stories on As We Are, and was so happy Zoya was interested in sharing my story too. I talk a lot in my interview about how my style has changed with my worsened chronic illness, the ways looks vs. feelings often don't match up, and how being chronically ill led me to develop a love for making my own clothes. You can read the full interview and see Zoya's photographs of me in some of my handmade clothes on As We Are. (Photo above by Zoya Jiwa)
This video about the project gives you a great sense of what the project's vibe is, and why Zoya started the project:
In Sickness and In Health Podcast
There's a WONDERFUL new podcast out about living with chronic illness, called In Sickness + In Health. I was such a fangirl after listening to the first several episodes, that Cara ended up reaching out to me for an interview about what it's like being an un/under-diagnosed complex chronic illness patient in Canada. The answer is: it's frustrating as hell, and I'm not getting the care I need.
It was a great experience doing this interview, and the day before the episode was released, I asked Cara to go easy on saying GP's can be gatekeepers who are resistant to making referrals when patients with complex issues aren't getting the help they need. And then yesterday I ate my words because I had yet another terribly frustrating GP appointment that left me wondering how I'm ever going to get a diagnosis, treatment, or improved health or quality of life when I have to fight tooth and nail for every tiny chance at medical care (just a chance, no guarantees!)
There may be a lot of things going right in Canada's healthcare system, but there is also a lot going wrong, especially when it comes to people who don't easily fit in one of the very small boxes the system expects. It leaves people like me - 35 years old, in the prime of life - struggling so much harder than I believe is necessary to build a life, career, and family, while their health is crumbling and their doctors are more willing to write a prescription for a wheelchair than a referral that might help figure out why they're so unwell to begin with.
To hear the interview, listen online or go look up "In sickness + In Health" on iTunes. All the other episodes are fantastic, and I highly recommend it!