Wow, I can't thank you both enough for such a powerful and nuanced discussion. As a physician assistant in primary care, I spent years helping patients come to terms with a new diagnosis. You're not taught this in medical school, but I soon realized that many patients were going through the stages of grieving. I would see them in sorrow, rage, denial, and finally acceptance. I found that helping patients recognizing their feelings of loss was critical in their getting to a place where they felt more empowered. For many adults without childhood illness, they have lived with an unconscious sense of their body as "perfect." The idea that they have a diagnosis brings up fears of mortality and limitation. It also forces one to recognize how much we do not control. In US culture that alone creates terror. We want to be in control in America.
Your discussion has brought up a whole other level of complexity for how this relates to children and adults with congenital conditions. In my experience the fact that medical schools do not discuss this can result in providers who fail to recognize the emotional impact of a diagnosis and the fact that it may take time for a patient to come to terms with it. This can lead to providers who see patients as resistant to care or "non-compliant." Then the providers can become frustrated. Like, "I'm trying to help them but they won't listen." It is very unfortunate because a compassionate supportive approach and expecting the process to take time, is very important. It sounds like for some kids with childhood illness, this process may come later in teen years as they become more self-aware. That can become a teaching point for providers caring for these kids. ie. Expect these kids to be exploring the meaning of their diagnosis as they hit teen and young adult years. Talk about it with kids and families.
One other reflection I will throw out. Our American idea that you and you alone are responsible for your "health." Is very much just that. An American idea. I would sit in a room with an American patient and family and the tone and implications from family would often have a judgmental component. If I went to the room next door and saw a patient and family from another country, say Mexico or the Middle East, the families overflowed with compassion. No judgement. No pity. Just genuine compassion for the trials of their loved one. We all have trials in life. We all deserve compassion for our struggles. The fact that judgmental blame has been attached to fantasies about control, bodies, and "health" is one of the crueler sides of American society today. And it's new. Heart failure in 1920 was not "your fault." It just was.
I hope you both keep up the difficult and important work of bringing thought and nuance to these topics. It helps to build a kinder more loving world. And I know it's not always easy to open you heart in the age of internet trolls. Thank You!
The term non-compliant is so loaded, isn't it? This happens to with how the family as a whole is viewed when the child is younger, too. There can definitely be a surface level assessment of a family as a "good" family because they follow through on recommendations even though there are so many factors that contribute.
Oh yes, non-compliant is heavily loaded for both patients and families. It's really a bullish*t term that often gets used by providers who don't really understand what their patient or family is going through. And once someone puts it on the chart, everyone starts interactions from a biased perspective. Often this means that compassion goes out the window too.
And who are the most "non-compliant" patients? Medical providers! Truly! We are constantly rationalizing all kinds of stupid stuff for ourselves. Personally I've had a 3 ankle surgeries. Everytime, I took the splint off early, twice I took my own stitches out, then I'd rebandage and put myself in an orthopedic boot. I'm actually 3 wks post-op right now so this is quite fresh. LOL
Thank you Virginia and Leigh for this episode. I was the embedded psychologist for a pediatric surgical team at a children's hospital until I left 2 years ago when my daughter was born, you both touched on so many elements of the pediatric experience that do not get addressed enough. As mentioned in the episode the research on health related quality of life with pediatric chronic illness and the impact of these experiences with healthcare is still at the beginning stages and there is so much more to know. Many of the missing voices are those who are and have gone through these experiences. One of my roles on our team (which was a Cleft-Craniofacial team) was around preparation and support for surgery/procedures, almost all of my recommendations developed with kids and families were about increasing autonomy for the child. I worked with some amazing providers who were open to ways to approach kids but I also worked with providers who I believe were still very well intended humans but struggled to see the purpose or feel that these steps were as important as the medical intervention was. I used to present on various topics related to pediatric medical care and would frame that these early experiences are going to impact how this child later engages with healthcare as an adult(especially for anyone with chronic conditions) and it was hard for people to look beyond the acute issue in front of them. There is so much more I could say about this episode but I will keep myself from writing an essay.
Nov 16, 2023Liked by Leigh Kamping-Carder, Virginia Sole-Smith
This was such an awesome thing to read! Thank you!
I'm going to recommend two Asian shows and ymmv in terms of how much your kid likes reading subtitles; my 8 yo niece has been watching one of the shows with me and she's really into it, subtitles and all. The Japanese show we've been watching is called Kieta Hatsukoi, and it's also known as My Love Mix-up. Essentially, boy likes girl, girl likes other boy, and somehow through an eraser, other boy thinks boy likes him and hijinks ensue. There is absolutely zero physical contact that isn't innocent as hell (no kissing even) and it's just...pure joyful happiness.
The other show (which my niece and I will start on once we finish Kieta) is called My School President. It's a Thai show (another one about boys in love; such is my watching), it's a musical, it's a comedy, and it's very cute. You may need to vet a couple episodes to make sure the tone is something you're okay with, but it's VERY tame (two kisses in the final episode) and it's also just pure comfort and joy. (Queer comfort and joy, no less!)
I wish someone had shown me more international TV throughout my life; I'm happy the world is discovering K-drama but there's so much more out there!
I cannot recommend enough Bob’s Burgers if you haven’t seen it. It’s streaming on Hulu. Yes, it IS a fox animated series, but it is NOTHING like the other ones they have. I don’t like any others but we LOVE Bob’s Burgers and my kids love it. The family can initially come off as uncaring and insensitive, but do me a favor and give it a couple episodes. It really shows moments of selfishness and lack of awareness about other’s needs and feelings but ALSO shows so much of the family caring about each other and all the huge and tiny ways they show it. They are on season 14 and the recent episode we watched (about a friend of the kids’ with divorced parents) was quite poignant. It’s clever and funny and sweet. And there’s a movie! I think it fits in right after the 12th season.
So I'm not a physician, but am a medical librarian, so a quick literature search looks like there is literature around CHD and eating disorders--not a lot, but there are some papers, several dealing with QT intervals. If you want more info, feel free to let me know. ;)
Thank you and I love this! I’ve only read about half because it hits a little too close to home today, but look forward to the rest on a calmer day. I’ve been living with symptoms of a genetic blood disorder since puberty and I’m still unpacking how that experience shapes my understanding of myself and my body. Love the inclusion of chronic illness/disability in the bigger discussion of fat phobia and bodies!
What a thought provoking and deeply personal conversation. Thank you both for sharing such intimate details of your lives. I am a Registered Nurse, taught by an amazing group of professors at Rutgers University who focused on patient autonomy, empathic caregiving, and questioning “the way things have always been done”. It was the culture of our program and discussed so frequently. We need this kind of teaching in all healthcare education! It really makes a difference. More than just a 15 minute talk buried in a long lecture. Whew…so much to think about with this episode.
Just wanted to say that after you first mentioned watching The Good Place with your 10-year-old, my husband and I started watching it with our 10-year-old and we also got another friend and their kid into it, to the point we got the friend this book for her birthday and they were both obsessively reading it at the birthday sleepover: https://bookshop.org/p/books/how-to-be-perfect-the-correct-answer-to-every-moral-question-michael-schur/17494407. So thank you for bringing this joy into our lives! I think you’ve probably seen it, but the first show I really watched with my oldest was The Baby-Sitter’s Club, which we both loved. My husband watched Wednesday with her, and we also loved Anne with an E. We have just one season of The Good Place left so I will be reading through these comments hoping for a good suggestion for something to watch next!
I'm still sad that there aren't more episodes of Big Dreams Small Spaces to watch. One of my all time fav shows (on Amazon and Tubi/Sling for free if others are looking for fun gardening reality tv!) The other reality series I loved that's not baking is The World's Most Extraordinary Homes. I love the hosts! So smart and charming.
Wow, I can't thank you both enough for such a powerful and nuanced discussion. As a physician assistant in primary care, I spent years helping patients come to terms with a new diagnosis. You're not taught this in medical school, but I soon realized that many patients were going through the stages of grieving. I would see them in sorrow, rage, denial, and finally acceptance. I found that helping patients recognizing their feelings of loss was critical in their getting to a place where they felt more empowered. For many adults without childhood illness, they have lived with an unconscious sense of their body as "perfect." The idea that they have a diagnosis brings up fears of mortality and limitation. It also forces one to recognize how much we do not control. In US culture that alone creates terror. We want to be in control in America.
Your discussion has brought up a whole other level of complexity for how this relates to children and adults with congenital conditions. In my experience the fact that medical schools do not discuss this can result in providers who fail to recognize the emotional impact of a diagnosis and the fact that it may take time for a patient to come to terms with it. This can lead to providers who see patients as resistant to care or "non-compliant." Then the providers can become frustrated. Like, "I'm trying to help them but they won't listen." It is very unfortunate because a compassionate supportive approach and expecting the process to take time, is very important. It sounds like for some kids with childhood illness, this process may come later in teen years as they become more self-aware. That can become a teaching point for providers caring for these kids. ie. Expect these kids to be exploring the meaning of their diagnosis as they hit teen and young adult years. Talk about it with kids and families.
One other reflection I will throw out. Our American idea that you and you alone are responsible for your "health." Is very much just that. An American idea. I would sit in a room with an American patient and family and the tone and implications from family would often have a judgmental component. If I went to the room next door and saw a patient and family from another country, say Mexico or the Middle East, the families overflowed with compassion. No judgement. No pity. Just genuine compassion for the trials of their loved one. We all have trials in life. We all deserve compassion for our struggles. The fact that judgmental blame has been attached to fantasies about control, bodies, and "health" is one of the crueler sides of American society today. And it's new. Heart failure in 1920 was not "your fault." It just was.
I hope you both keep up the difficult and important work of bringing thought and nuance to these topics. It helps to build a kinder more loving world. And I know it's not always easy to open you heart in the age of internet trolls. Thank You!
The term non-compliant is so loaded, isn't it? This happens to with how the family as a whole is viewed when the child is younger, too. There can definitely be a surface level assessment of a family as a "good" family because they follow through on recommendations even though there are so many factors that contribute.
Oh yes, non-compliant is heavily loaded for both patients and families. It's really a bullish*t term that often gets used by providers who don't really understand what their patient or family is going through. And once someone puts it on the chart, everyone starts interactions from a biased perspective. Often this means that compassion goes out the window too.
And who are the most "non-compliant" patients? Medical providers! Truly! We are constantly rationalizing all kinds of stupid stuff for ourselves. Personally I've had a 3 ankle surgeries. Everytime, I took the splint off early, twice I took my own stitches out, then I'd rebandage and put myself in an orthopedic boot. I'm actually 3 wks post-op right now so this is quite fresh. LOL
Thank you for listening/reading, Kathleen. It is really interesting to hear how it goes from the provider perspective.
Thank you Virginia and Leigh for this episode. I was the embedded psychologist for a pediatric surgical team at a children's hospital until I left 2 years ago when my daughter was born, you both touched on so many elements of the pediatric experience that do not get addressed enough. As mentioned in the episode the research on health related quality of life with pediatric chronic illness and the impact of these experiences with healthcare is still at the beginning stages and there is so much more to know. Many of the missing voices are those who are and have gone through these experiences. One of my roles on our team (which was a Cleft-Craniofacial team) was around preparation and support for surgery/procedures, almost all of my recommendations developed with kids and families were about increasing autonomy for the child. I worked with some amazing providers who were open to ways to approach kids but I also worked with providers who I believe were still very well intended humans but struggled to see the purpose or feel that these steps were as important as the medical intervention was. I used to present on various topics related to pediatric medical care and would frame that these early experiences are going to impact how this child later engages with healthcare as an adult(especially for anyone with chronic conditions) and it was hard for people to look beyond the acute issue in front of them. There is so much more I could say about this episode but I will keep myself from writing an essay.
It's so important to get the patient perspective when doing that kind of research! Thank you for sharing.
This was such an awesome thing to read! Thank you!
I'm going to recommend two Asian shows and ymmv in terms of how much your kid likes reading subtitles; my 8 yo niece has been watching one of the shows with me and she's really into it, subtitles and all. The Japanese show we've been watching is called Kieta Hatsukoi, and it's also known as My Love Mix-up. Essentially, boy likes girl, girl likes other boy, and somehow through an eraser, other boy thinks boy likes him and hijinks ensue. There is absolutely zero physical contact that isn't innocent as hell (no kissing even) and it's just...pure joyful happiness.
The other show (which my niece and I will start on once we finish Kieta) is called My School President. It's a Thai show (another one about boys in love; such is my watching), it's a musical, it's a comedy, and it's very cute. You may need to vet a couple episodes to make sure the tone is something you're okay with, but it's VERY tame (two kisses in the final episode) and it's also just pure comfort and joy. (Queer comfort and joy, no less!)
I wish someone had shown me more international TV throughout my life; I'm happy the world is discovering K-drama but there's so much more out there!
I cannot recommend enough Bob’s Burgers if you haven’t seen it. It’s streaming on Hulu. Yes, it IS a fox animated series, but it is NOTHING like the other ones they have. I don’t like any others but we LOVE Bob’s Burgers and my kids love it. The family can initially come off as uncaring and insensitive, but do me a favor and give it a couple episodes. It really shows moments of selfishness and lack of awareness about other’s needs and feelings but ALSO shows so much of the family caring about each other and all the huge and tiny ways they show it. They are on season 14 and the recent episode we watched (about a friend of the kids’ with divorced parents) was quite poignant. It’s clever and funny and sweet. And there’s a movie! I think it fits in right after the 12th season.
I think she might have watched it with her dad! Agreed, such a good show.
So I'm not a physician, but am a medical librarian, so a quick literature search looks like there is literature around CHD and eating disorders--not a lot, but there are some papers, several dealing with QT intervals. If you want more info, feel free to let me know. ;)
I'd be very interested in this! Feel free to shoot me an email at theheartdialogues@substack.com if you want to share. Thanks!
Thank you and I love this! I’ve only read about half because it hits a little too close to home today, but look forward to the rest on a calmer day. I’ve been living with symptoms of a genetic blood disorder since puberty and I’m still unpacking how that experience shapes my understanding of myself and my body. Love the inclusion of chronic illness/disability in the bigger discussion of fat phobia and bodies!
Thank you, Briana! And, of course, take your time. :)
What a thought provoking and deeply personal conversation. Thank you both for sharing such intimate details of your lives. I am a Registered Nurse, taught by an amazing group of professors at Rutgers University who focused on patient autonomy, empathic caregiving, and questioning “the way things have always been done”. It was the culture of our program and discussed so frequently. We need this kind of teaching in all healthcare education! It really makes a difference. More than just a 15 minute talk buried in a long lecture. Whew…so much to think about with this episode.
So great to hear programs like that are out there! Thanks for sharing.
Just wanted to say that after you first mentioned watching The Good Place with your 10-year-old, my husband and I started watching it with our 10-year-old and we also got another friend and their kid into it, to the point we got the friend this book for her birthday and they were both obsessively reading it at the birthday sleepover: https://bookshop.org/p/books/how-to-be-perfect-the-correct-answer-to-every-moral-question-michael-schur/17494407. So thank you for bringing this joy into our lives! I think you’ve probably seen it, but the first show I really watched with my oldest was The Baby-Sitter’s Club, which we both loved. My husband watched Wednesday with her, and we also loved Anne with an E. We have just one season of The Good Place left so I will be reading through these comments hoping for a good suggestion for something to watch next!
OOH so glad to have this book rec!
"We don't do reality shows" — Virginia! Aren't you a Monty Don fan? I think that counts.
Ok FAIR. My Britbox subscription lapsed so I’m not current but we watched hours of Monty during lockdown especially…
I'm still sad that there aren't more episodes of Big Dreams Small Spaces to watch. One of my all time fav shows (on Amazon and Tubi/Sling for free if others are looking for fun gardening reality tv!) The other reality series I loved that's not baking is The World's Most Extraordinary Homes. I love the hosts! So smart and charming.
actress/property enthusiast Caroline Quentin is a PARTICULAR delight
Hi again~I just posted a comment on the first email asking about the transcript, then saw this. Thank you!
Oh good, so glad this one worked! (Whew, Substack, rough start to our Thursday.😂)