I went through the pregnancy bad news waiting period earlier this year and it was such a unique, lonely, devastating experience. I, too, obsessed about Reddit threads, ChatGPT, stats, etc., grasping at any sort of information that could make me feel like I was more in control. I have talked to many friends, family, and therapists but have never felt seen or fully understood until I listened to this episode. Thank you to you, PJ, and to Amanda Hess for bringing this story to Search Engine. It was something I SO needed to hear.
After experiencing a second miscarriage this year I was hesitant to listen to this episode but am so glad I did. PJ always has a way of brining vulnerability and humanity to an interview and I just adored Amanda’s honesty and self reflection. The mom in me was also relieved to hear that her son is doing alright.
I especially appreciated the conversation on acquiring information and control vs knowledge and experience. This is something I plan to hold onto as we venture into the diagnostic world of infertility and recurrent pregnancy loss.
My father in law recently passed away from Parkinson’s disease. He fretted constantly with the knowledge that he was going to die early and with difficulty. It really cast a pall over his last years. In fantasy world, I wish the family could have had the knowledge and secretly given him the palliative medicine without his knowing. Sometimes a diagnosis is a blessing, sometimes a curse.
I'm going in for my genetic testing in two weeks and this is the most anxious I've ever been. The not knowing is so intense. I might have to save this until I get good news, but I can't wait to listen!!
i'm sorry, and good luck. i just went through one of those myself. i wish i had been more disciplined about googling and chatgpt-ing. can't control one's mind, but i wish i had been more disciplined about controlling my inputs. sending some hope from here!
Wow, as someone who deals with OCD, this sounds exactly like the way I process things, especially when it comes to medicine. A lot of OCD (for me) is trying to find things you can control, and getting all the possible information, even when it's bad and when it's doing more harm than good, is one of those ways that need for control manifests.
I wanted to thank you for this episode. I relate so much to the impulse to compulsively seek answers from the internet in the face of medical uncertainty.
I’m currently doing IVF. 95% of people will get pregnant within 3 good-quality embryo transfers — unfortunately, I find myself in the remaining 5%. I’m currently undergoing a lot of “cutting edge” (i.e. experimental and unproven) tests totaling thousands of dollars out of pocket and potentially delaying my treatment for months to (maybe) find out why.
I’ve spent weeks reading dense research papers I have no business trying to understand. Topics of my recent Claude chats include “Explain regression analysis for absolute beginners” and “What is a p-value?” My therapist says the answers I’m really seeking can’t be found on PubMed. I ignore her and read 8 papers on BCL6 protein expression as a marker for endometrial inflammation.
I often feel that while I’m drowning in information, wisdom is no closer at hand.
This topic is so important, I'm so glad to have heard this episode! Getting Amanda's book immediately. I've had 2 amniocenteses (which I would call positive experiences) and feel pretty strongly that this test should be more frequently discussed/offerred to pregnant people (ACOG agrees!). I definitely think knowledge is power, but there is something called a "variant of uncertain significance" (VUS) that haunted me while waiting for the results. It's apparently a genetic change with an effect on health that is not yet known. I thought having the amnio would bring me the information/control I so desperately wanted and, to an extent, it did. But there is something poetic about the test to bring me that information having the potential to bring yet more uncertainty.
This episode gave me some kind of grief nightmare. I dreamt I was undergoing an involved test, laying on a gurney, waiting for the nurse to set up the equipment. He spoke vaguely about the disease they were testing for, and it slowly dawned on me it was Huntington’s. I thought of how little time I had left until it might onset, thought of all the things I would never be able to do. I began to sob. Wracking, heaving, ragged sobs. The nurses and other patients ignored me. I woke up crying.
The thing is, I work in medical testing. Not genetic tests, but I’m cognizant that there’s a doctor and patient waiting for every result, that it could change the course of their treatment. And still it is hard to resist seeing just another tube of blood to go on a machine. Whenever I hear people talk about the impact of testing on their psyches, it reminds me that this power we wield can be a heavy burden. There are risks to overscreening and overreacting. What will we do with the information once we have it? Will we understand it?
Great episode as always. It really resonated with m, especially the discussion around coping with uncertainty. For me, my default has always been to reach for my phone. I’ve even jokingly referred to it as my profetizar (à la The Thing, 1982). But of course, this isn’t a new issue exclusive to internet culture.
I was born in the early ‘80s with a genetic condition called albinism. When the doctors first offered a suspected diagnosis, the first thing I’m told my father did was head to the Queen’s University library to look it up. I’ve been told he found books on segregation, stories of people with albinism living in isolation or being outcast to islands. You can imagine the kind of anxiety that created for my parents. So while those were books—not instant answer, the coping mechanism of information-seeking isn’t new.
The other thought I had throughout the interview, particularly in Amanda’s case, was how ableist these genetic tests can seem. She even acknowledged this when she said she had never pictured a pregnancy outcome where her child might have a disability. As someone who has lived a happy, fulfilling life with a disability, it’s unsettling to think about a future or a present where parents are making decisions based on whether a child with a disability should even be allowed to exist. It’s a profoundly slippery slope—beyond the scope of this episode, but deeply important.
Thanks as always to the team for these though provoking episodes.
I echo the comment someone made that this episode is very relevant if you have OCD. I have a long history with severe OCD and a lot of it centres around feeling that if I just research or ruminate about this thing one more time, I will have enough information to be 'sure'. I'm sure I'm going to be an absolute menace for my poor husband when I'm one day (hopefully) pregnant.
Random admin note: I use Castbox and the episode came up for me (and still shows) as "Draft Episode for June 13th" which I assume it's not meant to be called! Just in case there's a backend glitch you want to sort out :)
Listening to this episode, I related to Amanda so deeply—it honestly felt like I was hearing my own story. I used Flo obsessively and even gamified my pregnancy in similar ways. Initially, I avoided extra testing, but everything changed when an abnormality showed up on my child’s ultrasound. From that point on, I dove into every rabbit hole I could find, trying to predict what might come next.
Getting our genetic test results brought some relief—it helped me realize I hadn’t done anything wrong—but I leaned heavily on PubMed and the internet, searching for answers and trying to make sense of everything. I even thought my baby sticking her tongue out was just a cute quirk—turns out, it was due to low muscle tone and an inability to keep it in her mouth.
While my child’s condition is different from Amanda’s child's, and it’s been a scary and difficult journey, it was incredibly validating to hear someone speak so openly about their experience. It reminded me that I’m not alone in turning to the internet for comfort, control, or clarity during such an uncertain time.
Every medical appointment or test for myself, my husband, my kids, or my PETS gives me this same sense of anxiety and doom. Every time. The world ceases to spin until I have an answer. Only once (so far, still have time for more bad news I suppose) has the answer been the worst-case scenario. It was for one of my kids. It was crushing, but life has moved on anyway. It was a genetic test, and he does have the genetic condition we were afraid of.
I really liked and felt uncomfortable with this episode.
I think it's very important to discuss amniocentesis, genetic testing, recognize the implications, etc before you're there in the office. I have an Ashkenazi Jewish family so....yeah, lots of testing in our circle. But I imagine most folks don't, so that's healthy to be bringing up and normalize.
I do get uncomfortable with your line about getting genetic testing was "too easy" and questioning whether you should go through with it. I understand from a mental standpoint where that comes from, but from a medical standpoint that felt a little dangerous. Genetic testing lets people know when they should get different cancer screenings earlier than the general population, it lets people prepare for genetic issues of a fetus; it's globally beneficial to humans. It's just powerful, and I understand that in itself is terrifying sometimes.
You know as I was listening to this episode, it reminded me how much we as humans crave certainty. I think that’s why tools like Google and now ChatGPT exist. We are in a constant state of yearning to know the answers to everything and these tools aim to solve that “problem”.
PJ, you said essentially that you struggle with this and that you don’t really know how to overcome it. I’ll tell you something that is probably not going to feel like a satisfactory solution - practicing mindfulness. I know it’s probably going to sound trite and self-helpy for many people, but the act of sitting while your thoughts bounce endlessly around your head really does help. Since I started meditating nearly 10 years ago, I’ve learned how to distance myself from my thoughts. I’ve learned to see them as what was and what could be - and not reality. Again that’s something super woo-woo sounding - I get it. But It’s just something that you don’t really see the impact of until an extended and consistent period of practice. It really helps.
a heart-wrenchingly great episode that was quite relevant to my lived experience, both in the realm of waiting for test results (yay, no cancer) and the anxiety loops, which i’d often get stuck in before i was diagnosed with and began treatment for OCD. one of the first directives from my therapist was strictly “no more googling” and inference-based CBT was profoundly helpful in cutting back on torturing myself. the obsessive desire for control makes so much sense in a world where everything feels so chaotic and out of control. i remind myself it’s just an illusion and a poorly-executed survival strategy (but thanks, brain, for trying so hard to keep me alive).
i would have loved to hear a bit about the connection between genetic testing, eugenics, and ableism, though. not as an individual issue but a societal and cultural one. i really appreciated amanda bringing up that sociologist’s perspective of the ethical implications of genetic testing. i felt so much empathy when she mentioned feeling shame talking about her own prejudice before her son was born, but i think she did a great job of summarizing why the testing ultimately helped them better prepare and care for him, and also how he’s perfect regardless. it still breaks my heart that people would rather choose death than care for a disabled child, but this is the society we live in largely due to ableism. it would make for a great topic to dive into if you ever do a follow-up and/or deeper dives into past episodes, as i don’t think it’s talked about enough, especially with so much information floating around and ever-advancing technologies.
overall, wonderful interview, and thanks for the knowledge nuggets to marinate on.
I went through the pregnancy bad news waiting period earlier this year and it was such a unique, lonely, devastating experience. I, too, obsessed about Reddit threads, ChatGPT, stats, etc., grasping at any sort of information that could make me feel like I was more in control. I have talked to many friends, family, and therapists but have never felt seen or fully understood until I listened to this episode. Thank you to you, PJ, and to Amanda Hess for bringing this story to Search Engine. It was something I SO needed to hear.
After experiencing a second miscarriage this year I was hesitant to listen to this episode but am so glad I did. PJ always has a way of brining vulnerability and humanity to an interview and I just adored Amanda’s honesty and self reflection. The mom in me was also relieved to hear that her son is doing alright.
I especially appreciated the conversation on acquiring information and control vs knowledge and experience. This is something I plan to hold onto as we venture into the diagnostic world of infertility and recurrent pregnancy loss.
My father in law recently passed away from Parkinson’s disease. He fretted constantly with the knowledge that he was going to die early and with difficulty. It really cast a pall over his last years. In fantasy world, I wish the family could have had the knowledge and secretly given him the palliative medicine without his knowing. Sometimes a diagnosis is a blessing, sometimes a curse.
I’m so sorry Mark. I can’t imagine. May his memory be a blessing.
I'm going in for my genetic testing in two weeks and this is the most anxious I've ever been. The not knowing is so intense. I might have to save this until I get good news, but I can't wait to listen!!
i'm sorry, and good luck. i just went through one of those myself. i wish i had been more disciplined about googling and chatgpt-ing. can't control one's mind, but i wish i had been more disciplined about controlling my inputs. sending some hope from here!
Wow, as someone who deals with OCD, this sounds exactly like the way I process things, especially when it comes to medicine. A lot of OCD (for me) is trying to find things you can control, and getting all the possible information, even when it's bad and when it's doing more harm than good, is one of those ways that need for control manifests.
I wanted to thank you for this episode. I relate so much to the impulse to compulsively seek answers from the internet in the face of medical uncertainty.
I’m currently doing IVF. 95% of people will get pregnant within 3 good-quality embryo transfers — unfortunately, I find myself in the remaining 5%. I’m currently undergoing a lot of “cutting edge” (i.e. experimental and unproven) tests totaling thousands of dollars out of pocket and potentially delaying my treatment for months to (maybe) find out why.
I’ve spent weeks reading dense research papers I have no business trying to understand. Topics of my recent Claude chats include “Explain regression analysis for absolute beginners” and “What is a p-value?” My therapist says the answers I’m really seeking can’t be found on PubMed. I ignore her and read 8 papers on BCL6 protein expression as a marker for endometrial inflammation.
I often feel that while I’m drowning in information, wisdom is no closer at hand.
I went through ART many years ago and remember the angst it caused in my every waking moment. Best of luck to you Liz.
This topic is so important, I'm so glad to have heard this episode! Getting Amanda's book immediately. I've had 2 amniocenteses (which I would call positive experiences) and feel pretty strongly that this test should be more frequently discussed/offerred to pregnant people (ACOG agrees!). I definitely think knowledge is power, but there is something called a "variant of uncertain significance" (VUS) that haunted me while waiting for the results. It's apparently a genetic change with an effect on health that is not yet known. I thought having the amnio would bring me the information/control I so desperately wanted and, to an extent, it did. But there is something poetic about the test to bring me that information having the potential to bring yet more uncertainty.
This episode gave me some kind of grief nightmare. I dreamt I was undergoing an involved test, laying on a gurney, waiting for the nurse to set up the equipment. He spoke vaguely about the disease they were testing for, and it slowly dawned on me it was Huntington’s. I thought of how little time I had left until it might onset, thought of all the things I would never be able to do. I began to sob. Wracking, heaving, ragged sobs. The nurses and other patients ignored me. I woke up crying.
The thing is, I work in medical testing. Not genetic tests, but I’m cognizant that there’s a doctor and patient waiting for every result, that it could change the course of their treatment. And still it is hard to resist seeing just another tube of blood to go on a machine. Whenever I hear people talk about the impact of testing on their psyches, it reminds me that this power we wield can be a heavy burden. There are risks to overscreening and overreacting. What will we do with the information once we have it? Will we understand it?
Great episode as always. It really resonated with m, especially the discussion around coping with uncertainty. For me, my default has always been to reach for my phone. I’ve even jokingly referred to it as my profetizar (à la The Thing, 1982). But of course, this isn’t a new issue exclusive to internet culture.
I was born in the early ‘80s with a genetic condition called albinism. When the doctors first offered a suspected diagnosis, the first thing I’m told my father did was head to the Queen’s University library to look it up. I’ve been told he found books on segregation, stories of people with albinism living in isolation or being outcast to islands. You can imagine the kind of anxiety that created for my parents. So while those were books—not instant answer, the coping mechanism of information-seeking isn’t new.
The other thought I had throughout the interview, particularly in Amanda’s case, was how ableist these genetic tests can seem. She even acknowledged this when she said she had never pictured a pregnancy outcome where her child might have a disability. As someone who has lived a happy, fulfilling life with a disability, it’s unsettling to think about a future or a present where parents are making decisions based on whether a child with a disability should even be allowed to exist. It’s a profoundly slippery slope—beyond the scope of this episode, but deeply important.
Thanks as always to the team for these though provoking episodes.
I echo the comment someone made that this episode is very relevant if you have OCD. I have a long history with severe OCD and a lot of it centres around feeling that if I just research or ruminate about this thing one more time, I will have enough information to be 'sure'. I'm sure I'm going to be an absolute menace for my poor husband when I'm one day (hopefully) pregnant.
Random admin note: I use Castbox and the episode came up for me (and still shows) as "Draft Episode for June 13th" which I assume it's not meant to be called! Just in case there's a backend glitch you want to sort out :)
Listening to this episode, I related to Amanda so deeply—it honestly felt like I was hearing my own story. I used Flo obsessively and even gamified my pregnancy in similar ways. Initially, I avoided extra testing, but everything changed when an abnormality showed up on my child’s ultrasound. From that point on, I dove into every rabbit hole I could find, trying to predict what might come next.
Getting our genetic test results brought some relief—it helped me realize I hadn’t done anything wrong—but I leaned heavily on PubMed and the internet, searching for answers and trying to make sense of everything. I even thought my baby sticking her tongue out was just a cute quirk—turns out, it was due to low muscle tone and an inability to keep it in her mouth.
While my child’s condition is different from Amanda’s child's, and it’s been a scary and difficult journey, it was incredibly validating to hear someone speak so openly about their experience. It reminded me that I’m not alone in turning to the internet for comfort, control, or clarity during such an uncertain time.
Every medical appointment or test for myself, my husband, my kids, or my PETS gives me this same sense of anxiety and doom. Every time. The world ceases to spin until I have an answer. Only once (so far, still have time for more bad news I suppose) has the answer been the worst-case scenario. It was for one of my kids. It was crushing, but life has moved on anyway. It was a genetic test, and he does have the genetic condition we were afraid of.
I really liked and felt uncomfortable with this episode.
I think it's very important to discuss amniocentesis, genetic testing, recognize the implications, etc before you're there in the office. I have an Ashkenazi Jewish family so....yeah, lots of testing in our circle. But I imagine most folks don't, so that's healthy to be bringing up and normalize.
I do get uncomfortable with your line about getting genetic testing was "too easy" and questioning whether you should go through with it. I understand from a mental standpoint where that comes from, but from a medical standpoint that felt a little dangerous. Genetic testing lets people know when they should get different cancer screenings earlier than the general population, it lets people prepare for genetic issues of a fetus; it's globally beneficial to humans. It's just powerful, and I understand that in itself is terrifying sometimes.
My best friend is pregnant and a pediatric oncologist. When people ask how she’s doing I say “she knows too much.”
You know as I was listening to this episode, it reminded me how much we as humans crave certainty. I think that’s why tools like Google and now ChatGPT exist. We are in a constant state of yearning to know the answers to everything and these tools aim to solve that “problem”.
PJ, you said essentially that you struggle with this and that you don’t really know how to overcome it. I’ll tell you something that is probably not going to feel like a satisfactory solution - practicing mindfulness. I know it’s probably going to sound trite and self-helpy for many people, but the act of sitting while your thoughts bounce endlessly around your head really does help. Since I started meditating nearly 10 years ago, I’ve learned how to distance myself from my thoughts. I’ve learned to see them as what was and what could be - and not reality. Again that’s something super woo-woo sounding - I get it. But It’s just something that you don’t really see the impact of until an extended and consistent period of practice. It really helps.
a heart-wrenchingly great episode that was quite relevant to my lived experience, both in the realm of waiting for test results (yay, no cancer) and the anxiety loops, which i’d often get stuck in before i was diagnosed with and began treatment for OCD. one of the first directives from my therapist was strictly “no more googling” and inference-based CBT was profoundly helpful in cutting back on torturing myself. the obsessive desire for control makes so much sense in a world where everything feels so chaotic and out of control. i remind myself it’s just an illusion and a poorly-executed survival strategy (but thanks, brain, for trying so hard to keep me alive).
i would have loved to hear a bit about the connection between genetic testing, eugenics, and ableism, though. not as an individual issue but a societal and cultural one. i really appreciated amanda bringing up that sociologist’s perspective of the ethical implications of genetic testing. i felt so much empathy when she mentioned feeling shame talking about her own prejudice before her son was born, but i think she did a great job of summarizing why the testing ultimately helped them better prepare and care for him, and also how he’s perfect regardless. it still breaks my heart that people would rather choose death than care for a disabled child, but this is the society we live in largely due to ableism. it would make for a great topic to dive into if you ever do a follow-up and/or deeper dives into past episodes, as i don’t think it’s talked about enough, especially with so much information floating around and ever-advancing technologies.
overall, wonderful interview, and thanks for the knowledge nuggets to marinate on.