You’re listening to Burnt Toast! This is the podcast about anti-fat bias, diet culture, parenting and health. I’m Virginia Sole Smith.

Today I am chatting about body autonomy, diet culture, and chronic health conditions, with Leigh Kamping-Carder, who writes The Heart Dialogues.

The Heart Dialogues is a newsletter for people with congenital heart conditions and the people who care about them. Leigh was born with a complex heart defect called tricuspid atresia and had three heart surgeries before she was four years old. She is also an award winning journalist. As a lot of you know, I’m a mom to a 10-year-old with a heart condition very similar to Leigh’s, so I’ve been following Leigh’s Substack for a while because she explores so many questions that we’re also navigating. Like, why not everybody with this diagnosis wants to be known as a “heart warrior.” Or how to advocate for yourself at doctors’ offices. And how living with a chronic condition impacts your relationship to your body in ways you’ve maybe never considered. Diet culture and anti-fatness show up, often quite reflexively, in even this kind of super specialized healthcare.

There is a lot here and I do want to throw in a quick content warning: If you are currently navigating a super fraught medical situation for yourself or with a loved one, today’s episode may not be for you. I know there are times when I am personally ravenous for this kind of conversation and times when I just can’t go there. So please take care of yourself. 

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Episode 118 Transcript

Leigh

My name is Leigh Kamping-Carder and I’m the writer of The Heart Dialogues newsletter on Substack, which is a newsletter for people who have congenital heart disease, which means they were born with some kind of complication with their heart.

I was born with a heart defect called tricuspid atresia, which means that the tricuspid valve, one of the valves in your heart, doesn’t form. As a result, I only have one ventricle, which is the main pumping chambers in the heart, instead of two. So I had several surgeries when I was like a little kid, and mostly lived a normal life. Then I think in the last few years I started to really realize that this is kind of a lifelong issue and more things can crop up as you get older. 

Congenital heart defects are actually the most common birth defect in the US. They affect roughly 1 in 100 babies. What’s been really incredible over the last few decades, is that, medical advances have allowed people to really live into adulthood and even old age. The flipside of that is that we’re realizing more and more that this is something that does affect people for their whole lives. There’s actually about 2.5 million people in the US who have congenital heart defects and the majority of them are adults. 

Virginia

Oh wow, that’s a big change.

Leigh

Yeah. It’s really something that for centuries was a death sentence, and then, was something that affected children. And now it’s this sort of prevalent thing, yet it’s also not talked about. There’s no fundraising run like there is for like cancer or Alzheimer’s or something like that. Which, not that it’s a competition or anything. But you probably know someone with a congenital heart defect, and yet you probably don’t know that you know someone. 

So what this means is that you can live your whole life without ever meeting anyone like you. That was certainly my experience. I didn’t meet anyone else with a heart defect until I was well into adulthood. I didn’t have friendships with anyone until I was in my mid-30s. 

In parallel to that, I live this normal life. I grew up in Toronto, Canada, I moved to New York, I became a journalist, and kind of got to this point where I was like, “I want to create a community.” And I thought, hey, I have skills. I’ve been reporting and e