"Is someone staring at my scar or my cleavage?"
"Is someone staring at my scar or my cleavage?"
I chatted with Virginia Sole-Smith for her "Burnt Toast" podcast about body image, scars, the pressure to be healthy and more.
Welcome! I’m longtime journalist Leigh Kamping-Carder, and this is The Heart Dialogues, a newsletter and growing community of people with congenital heart conditions. (Parents, partners, friends and healthcare providers are also fans!) Subscribe with your email address to get candid conversations, essays, reader threads, resources and other good stuff free in your inbox every other week.
Welcome to the new folks here! Many of you are reaching me via my appearance on “Burnt Toast,”
’s Substack about diet culture, fat phobia, parenting and many other good things! Today’s bonus edition will be familiar to you, but stay tuned because I’ve got some great pieces coming up—everything from a Q&A on falling out of cardiac care to a moving essay from a heart dad.For everyone else, I’m excited (and a bit nervous!) to bring you my conversation with Virginia, who in addition to being an excellent journalist and writer is the mom of a 10-year-old girl with a complex congenital heart condition.
This is one of the most open and honest conversations I’ve had in public about how my heart stuff has affected my body image, as well as how weight stigma and healthism show up in the CHD space. It was also enlightening for me to hear what Virginia and her daughter’s experiences have been like navigating medical care, some 30 years after me. Spoiler alert: It sounds like things are actually maybe getting better?
You can listen right here in the newsletter or on Apple, Spotify or any podcast player.
You can also read a transcript of the full episode with lots of good links. Plus, here are a few highlights:
On exercise:
When I was younger, I was always encouraged to exercise. So I think for me and perhaps other people like me, it felt like I could never do enough. Like, I could never be healthy enough. And that anything I did do didn’t count unless it was to the nth degree.
But there are a lot of people in my generation who grew up with CHDs and were told they should never exercise. So I think for that population of people who were told that they couldn’t exercise, it was very much like, “Wait, now that guidance has changed.” And then there’s a lot of anxiety around any kind of movement.
On my scars:
My experience was that when I was a kid, I didn’t really think about my scar. I think everyone that I was interacting with knew me, they knew my history, they knew that it was there. I stopped seeing it, they stopped seeing it, it was fine.
Then I think as I got older, particularly into teenage years, and then definitely when I was in my 20s and I was going to college or traveling or just meeting new people and dating, especially, was when it would come up. Because you would meet someone and for me, I would think, Oh my god, the first thing that they’re going to see is my scar, and the only thing they’re going to look at is my scar, and I have to explain what is this thing on my body? I have to explain my body to them. So it was really on my mind.
I think there are some people who do see it as a badge of honor or that kind of thing. There’s scar pride and whatever. And then I think there’s lots of people who don’t really think about it that much. And then I think there’s also people who, you know, do still feel really sensitive about it, particularly if you’re a woman.
On health:
We talk about healthy often as this dichotomy with being unhealthy. If you’re unhealthy, it’s this sort of temporary place where you’re going to snap into being healthy at some point. For me, it’s never been like that. For many, many people it’s not like that.
And when we say the word “healthy,” the assumption often is a healthy diet, whatever that is, no fat or carbs, or sugar, and healthy weight, meaning thin. All the other aspects of health are so rarely part of it. I think it’s true for the CHD community, but for everyone. But healthy can be getting a good sleep, it can be spending time with your friends, it can be getting outdoors. There are so many ways to be healthy.
Related links
Meet the model embracing "scar inclusivity." Andrianna Acosta had open heart surgery at 8 months old. Her zipper scar is not a flaw.
How a rare heart defect changed one woman's idea of her body. Born with Shone’s complex, Mallory Stanek discusses the pressure to be thin and healthy with a heart condition, and how she moved forward from sexual assault.
She wrote the book on CHD and mental health (literally). Therapist and author Tracy Livecchi eventually got the emotional support she needed—and she wants to make sure other CHDers get it too.
How have you navigated body image, exercise and health alongside heart issues? Tap the comment button or email me at theheartdialogues@substack.com.
Absolutely loved our conversation and I keep hearing the same from listeners!
Thank you for this newsletter! I was born with Tetralogy of Fallot and was “lost to care” until my 30th birthday when I was told that not only was I NOT actually cured as a child, but that I would need several more heart surgeries in my life…starting right away! I had a valve placement in 2008 and will likely need a replacement in the next few years. Back when I was 30 I was stunned that so many people like me were told that they were fixed as kids and could live a normal life, only to have a health crisis as an adult and learn otherwise. Keep up the great work! We need more information out there like this to help people get the care they need, both medically and emotionally.