Episode #69: Simon and Martina Stawski
Simon and Martina are a married couple living in Korea and Japan for the past 11 years, and run one of the biggest YouTube channels in Asia. They make food and travel videos from all over the world, all while trying to live their best lives with Ehlers-Danlos Syndrome, Dysautonomia, and POTS.
Simon and Martina Stawski didn’t plan on becoming YouTube famous...but with over 1.4 million subscribers, it’s safe to say their channel is very popular. Simon and Martina share many aspects of their lives with their audience, including how they approach Martina’s diagnosis of Ehlers-Danlos syndrome (EDS). Martina has hypermobile EDS, also sometimes called type 3 EDS, and it’s becoming a bigger part of her and Simon’s story as they get older. On today’s episode, I talk with Simon and Martina about how honest conversation and strategizing plays a huge role in their team effort to manage EDS, especially now that Martina’s symptoms are more challenging. We also talk about the inevitable ups and downs of managing a chronic illness, what they choose to share with their fans, and why, for them, the term “caregiver” doesn’t feel like the right way to describe Simon’s role. Throughout our conversation, these two finish each other’s sentences, laugh with each other, and make me laugh, too. (You have to hear them use the phrase, “It’s EDS, bitch” and explain why it’s so helpful to them.)
“We understand that this is a team effort and both of us have to step up to the plate.”
Here are some of the things Simon, Martina, and I chatted about:
How making videos for family back in Canada launched their “accidental YouTube career”
How they met, and then realized soon after starting to date that they were going to get married
The info Martina got about EDS when she was diagnosed--which made it seem not so bad
For Martina, how the internet helped her understand the realities of EDS and find her people
The symptoms Martina experiences, and the process of discovering new patterns of symptoms
Accepting the “chronic” in chronic pain, and taking care of Martina’s health with that in mind
Why, as someone without a chronic illness, it’s important to step out of your assumptions
Martina’s two-pronged approach to handling situations where someone clearly doesn’t “get it”
How, as a couple, they make strategy plans to attack different chronic illness situations
The need for partners to understand that people with chronic illness are constantly changing
How their discussions around chronic illness evolve over time, and what’s shifted recently
#BuildALadder, the mantra that Martina uses to remind herself that every little step counts
The Rainbow Ladder Support team, and their understanding of Martina’s “secret code”
The difficulty--for both of them--of filming a video that captures the reality of an “off” day
Why they have trouble with the word “caregiver,” especially in the context of a relationship
How Martina navigates talking to friends about EDS, given that she doesn’t want pity
The role that food plays in their lives and Martina’s health, and why it’s a complex topic
The responsibility they feel to their YouTube viewers who are also navigating chronic illness
What it meant for Martina to discover a supportive community after feeling alone for so long
“We have to learn how to flow with this chronic part, and our partner needs to understand that we’re not going to be in one place.”
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