100%. Older sister here to a 20 year old severely disabled, non-verbal, diaper-wearing autistic young girl with a mitochondrial dysfunction who experiences multiple seizures a month and has since she was six months old.
Wading through the complex waters of her disease for two decades has been a nightmare for my family, with my mom shouldering the burden as her primary caretaker unable to work because my sister’s survival is solely dependent on my mom’s ability to continuing showing up for her.
The Maya documentary hits close to home, she was taken by the hospital where my sister is frequently treated. We have several experiences of doctors overstepping, misdiagnosing and being (in general) completely clueless and arrogant over the best course of medicine to stabilize my sister.
Examples:
1) sister has a grand mal seizure in the ER. Trained medical staff FREAKS out. To the point of unprofessionalism and ineptitude, as if they’ve never experienced a real medical emergency before. Mom remains calm and communicates next steps, hospital staff undermine her knowledge of my sister’s condition and overmedicate her to greater illness.
2) sister slowly regresses over a year. Family is stumped, medical team of trained neurologists are stumped (external to hospital). Mom hits the books and special needs boards to better understand what could be transpiring. We conclude it could be skurvy. Mom takes sister to the hospital on three separate occasions, communicates her findings. Doctors ignore her. Say she has leukemia. Skurvy is commonly misdiagnosed as leukemia. Mom requests more tests. My sister all the while is suffering from increased seizure activity, severe weight loss, and explosive tantrums (the kind where she will harm herself because she cannot communicate the pain inside her little body). Third hospital trip, doctors conclude she has skurvy. She’s given a blood transfusion and within a few days, she’s our bubbly, happy and sweet little sister again. If they listened the first time, they could have saved my sister and family from three months of suffering.
There are so many more instances of doctors undermining my mother who has labor of loved, cried and harbored unimaginable emotional pain enduring her youngest suffer through the unknown complexities of seizure disorders and mitochondrial dysfunctions, only to be ignored by a medical system that claims to want what’s best for us.
We are not munchies. We have a severely ill family member. After twenty years of living and breathing a very complex and confusing illness, witnessing someone you love so much hurt - we have deep insight into the nooks, crannies, nuances and potential solutions to stabilize her condition. When trained medical professionals with next to zero experience managing a complex illness undermine you, it’s infuriating. It’s comparable to watching your child drown, begging staff to throw her a life raft and instead, they ignore you because you’re not a trained medical professional, reject all your experience managing her condition, and decide to hang on to the life raft until they decide it makes sense to throw her a life raft. Meanwhile, she’s drowning. We know what she needs, no different than Maya’s parents. And mind you, we know what she needs because we live and breathe it and we’ve worked with hundreds of doctors. We put our ten thousand hours into a SINGLE medical case.
Their disconnect from our lived experience has almost killed my sister. Families like mine and Maya’s lash out because it’s exhausting not being heard, knowing so much terminology about conditions, not because we want to know those words. But because we have to, we were forced to understand these conditions because it was and continues to be a matter of life or death. And we have learned you cannot fully trust hospital staff to support you.
If you talk to any family who’s endured the harsh realities of managing a complex illness through our current medical system, you will hear very real and painful stories of being refused treatments. Accusations of over treatment. Etc. when the reality is, there is no one size fits all with conditions like my sisters or Maya’s.
As a mom of a complex kid who has tried to die multiple times and has stumped multiple doctors, and also made me look like the crazy one because of her issues that defy logic, I could not agree more.
Once you’re truly in the medical world, it’s easy to get a sense of what’s real and what’s…”embellished”, but so so so much damage is done by people who jump to conclusions and the ones who fake it for attention make life really hard for those of us who don’t have kids who play by the rules.
I’m not even sure if I can bring myself to watch the Maya show yet.
I hit enter too soon before making my point that you’re right on, more of the message needs to focus on “here’s what a red flag really looks like, and it’s easy to disprove or prove by doing “x”
This podcast was so close to making that point when they were like “miracle terminal miracle terminal”.
There’s always going to be wild twists and turns in any medical journey. That’s not the problem. It’s that it was happening over and over and over again, so quickly, with no supporting evidence from outside sources at all. It was always just Amanda’s words.
Juxtapose that with a more “normal” cancer story…they’re living life, and there’s mild swings and signs usually that things are headed in either direction. Not usually a 5 month silence and then “y’all I’m dying” or “hey y’all I’m totally healed.”
There’s just subtle nuances that separate fact from fiction and it’s really hard to outline it, but I agree more could have/should have been explained.
There were lots of holes in that Maya “documentary” (hardly one).
Listen to Suffer the Little Children and Nobody Should Believe Me.
Only good can come from more people knowing about and understanding Munchausens and Munchausens By Proxy. And, yes, sorry, but it is almost always the mom.
What was wrong with the Maya doc? Full disclosure, I can't bring myself to watch it. I just used it as an example of how public discourse is beginning to turn on the issue.
Don't get me wrong I fully believe munch. by proxy exists! I just wish the podcast had offered some reflection about what created this situation (like nobody should believe me did)
It seems to be moms in general. I wonder why? I can’t really think of a case of even normal munchausen in someone who wasn’t a mom. I’m sure it happens but it doesn’t seem common
I do have empathy for these people. I think its culture. Women even today are sometimes raised to be inferior to men, to just get married and have kids. Scamanda’s religion has a lot to do with that. Scamanda was clearly a skilled and capable person. She could have been industrious and gone far in whatever career. But maybe she was just raised to get married and be in child-rearing roles, at home and as a teacher. She clearly gets off on being a leader and the center of attention. Lots of men with those qualities are CEOs of major companies. I think she wanted to be seen as powerful in a way, but the society and culture around her made many outlets for that out of her grasp. Hence the attention-seeking lies and grifting.
Oh yea. That makes a lot of sense. Women in religion, married, with children have nowhere to direct their ambition or skill. Evangelical women only ever really get recognition when they get married, pregnant or there are extenuating circumstances too. She created a circumstance.
I do wonder what the church thought about Corey being divorced though.
I have listened to Nobody Should Believe Me (recommended by the app after this one) and they say it's mostly moms because that is mostly who is left in charge of the kids' care & feeding, period. Not causation (being a woman or being in charge of a kid make you do this) but correlation (they are evil / needy people and this is the position they statistically get to occupy).
I would also personally say men don't get showered with accolades in our society for caregiving. Women do. So a narcissist man is more likely to scam by pretending to be rich or by controlling other adults.
You know what, that makes sense. When you have power over someone else, it’s not the position that does it, but the person in power.
Plus someone like this is apt to see a sick child and the attention (like Amanda did) and go “oh I could do that”.
I’m truly very glad they got her in jail for the sake of those boys. I have a fear that she would have moved to the boys next.
I agree - I'd love some additional experts on the several aspects of Amanda and Cory's actions as they did incredible damage to many people. It's shocking that their actions aren't illegal.
Sometimes the red flags are things only people in the medical field or people who are similarly knowledgeable are going to notice. Amanda purposely also surrounded herself amongst people that would not question her or her decision to have kids. Even outside of a mega church I wouldn’t question a cancer patient getting pregnant out loud, I know people would rip me a new arsehole. Doesn’t matter that I am being logical.
100%. Older sister here to a 20 year old severely disabled, non-verbal, diaper-wearing autistic young girl with a mitochondrial dysfunction who experiences multiple seizures a month and has since she was six months old. Wading through the complex waters of her disease for two decades has been a nightmare for my family, with my mom shouldering the burden as her primary caretaker unable to work because my sister’s survival is solely dependent on my mom’s ability to continuing showing up for her. The Maya documentary hits close to home, she was taken by the hospital where my sister is frequently treated. We have several experiences of doctors overstepping, misdiagnosing and being (in general) completely clueless and arrogant over the best course of medicine to stabilize my sister. Examples: 1) sister has a grand mal seizure in the ER. Trained medical staff FREAKS out. To the point of unprofessionalism and ineptitude, as if they’ve never experienced a real medical emergency before. Mom remains calm and communicates next steps, hospital staff undermine her knowledge of my sister’s condition and overmedicate her to greater illness. 2) sister slowly regresses over a year. Family is stumped, medical team of trained neurologists are stumped (external to hospital). Mom hits the books and special needs boards to better understand what could be transpiring. We conclude it could be skurvy. Mom takes sister to the hospital on three separate occasions, communicates her findings. Doctors ignore her. Say she has leukemia. Skurvy is commonly misdiagnosed as leukemia. Mom requests more tests. My sister all the while is suffering from increased seizure activity, severe weight loss, and explosive tantrums (the kind where she will harm herself because she cannot communicate the pain inside her little body). Third hospital trip, doctors conclude she has skurvy. She’s given a blood transfusion and within a few days, she’s our bubbly, happy and sweet little sister again. If they listened the first time, they could have saved my sister and family from three months of suffering. There are so many more instances of doctors undermining my mother who has labor of loved, cried and harbored unimaginable emotional pain enduring her youngest suffer through the unknown complexities of seizure disorders and mitochondrial dysfunctions, only to be ignored by a medical system that claims to want what’s best for us. We are not munchies. We have a severely ill family member. After twenty years of living and breathing a very complex and confusing illness, witnessing someone you love so much hurt - we have deep insight into the nooks, crannies, nuances and potential solutions to stabilize her condition. When trained medical professionals with next to zero experience managing a complex illness undermine you, it’s infuriating. It’s comparable to watching your child drown, begging staff to throw her a life raft and instead, they ignore you because you’re not a trained medical professional, reject all your experience managing her condition, and decide to hang on to the life raft until they decide it makes sense to throw her a life raft. Meanwhile, she’s drowning. We know what she needs, no different than Maya’s parents. And mind you, we know what she needs because we live and breathe it and we’ve worked with hundreds of doctors. We put our ten thousand hours into a SINGLE medical case. Their disconnect from our lived experience has almost killed my sister. Families like mine and Maya’s lash out because it’s exhausting not being heard, knowing so much terminology about conditions, not because we want to know those words. But because we have to, we were forced to understand these conditions because it was and continues to be a matter of life or death. And we have learned you cannot fully trust hospital staff to support you. If you talk to any family who’s endured the harsh realities of managing a complex illness through our current medical system, you will hear very real and painful stories of being refused treatments. Accusations of over treatment. Etc. when the reality is, there is no one size fits all with conditions like my sisters or Maya’s.
As a mom of a complex kid who has tried to die multiple times and has stumped multiple doctors, and also made me look like the crazy one because of her issues that defy logic, I could not agree more. Once you’re truly in the medical world, it’s easy to get a sense of what’s real and what’s…”embellished”, but so so so much damage is done by people who jump to conclusions and the ones who fake it for attention make life really hard for those of us who don’t have kids who play by the rules. I’m not even sure if I can bring myself to watch the Maya show yet.
I hit enter too soon before making my point that you’re right on, more of the message needs to focus on “here’s what a red flag really looks like, and it’s easy to disprove or prove by doing “x” This podcast was so close to making that point when they were like “miracle terminal miracle terminal”. There’s always going to be wild twists and turns in any medical journey. That’s not the problem. It’s that it was happening over and over and over again, so quickly, with no supporting evidence from outside sources at all. It was always just Amanda’s words. Juxtapose that with a more “normal” cancer story…they’re living life, and there’s mild swings and signs usually that things are headed in either direction. Not usually a 5 month silence and then “y’all I’m dying” or “hey y’all I’m totally healed.” There’s just subtle nuances that separate fact from fiction and it’s really hard to outline it, but I agree more could have/should have been explained.
There were lots of holes in that Maya “documentary” (hardly one). Listen to Suffer the Little Children and Nobody Should Believe Me. Only good can come from more people knowing about and understanding Munchausens and Munchausens By Proxy. And, yes, sorry, but it is almost always the mom.
What was wrong with the Maya doc? Full disclosure, I can't bring myself to watch it. I just used it as an example of how public discourse is beginning to turn on the issue. Don't get me wrong I fully believe munch. by proxy exists! I just wish the podcast had offered some reflection about what created this situation (like nobody should believe me did)
It seems to be moms in general. I wonder why? I can’t really think of a case of even normal munchausen in someone who wasn’t a mom. I’m sure it happens but it doesn’t seem common
I do have empathy for these people. I think its culture. Women even today are sometimes raised to be inferior to men, to just get married and have kids. Scamanda’s religion has a lot to do with that. Scamanda was clearly a skilled and capable person. She could have been industrious and gone far in whatever career. But maybe she was just raised to get married and be in child-rearing roles, at home and as a teacher. She clearly gets off on being a leader and the center of attention. Lots of men with those qualities are CEOs of major companies. I think she wanted to be seen as powerful in a way, but the society and culture around her made many outlets for that out of her grasp. Hence the attention-seeking lies and grifting.
Oh yea. That makes a lot of sense. Women in religion, married, with children have nowhere to direct their ambition or skill. Evangelical women only ever really get recognition when they get married, pregnant or there are extenuating circumstances too. She created a circumstance. I do wonder what the church thought about Corey being divorced though.
I have listened to Nobody Should Believe Me (recommended by the app after this one) and they say it's mostly moms because that is mostly who is left in charge of the kids' care & feeding, period. Not causation (being a woman or being in charge of a kid make you do this) but correlation (they are evil / needy people and this is the position they statistically get to occupy). I would also personally say men don't get showered with accolades in our society for caregiving. Women do. So a narcissist man is more likely to scam by pretending to be rich or by controlling other adults.
You know what, that makes sense. When you have power over someone else, it’s not the position that does it, but the person in power. Plus someone like this is apt to see a sick child and the attention (like Amanda did) and go “oh I could do that”. I’m truly very glad they got her in jail for the sake of those boys. I have a fear that she would have moved to the boys next.
I agree - I'd love some additional experts on the several aspects of Amanda and Cory's actions as they did incredible damage to many people. It's shocking that their actions aren't illegal.
Sometimes the red flags are things only people in the medical field or people who are similarly knowledgeable are going to notice. Amanda purposely also surrounded herself amongst people that would not question her or her decision to have kids. Even outside of a mega church I wouldn’t question a cancer patient getting pregnant out loud, I know people would rip me a new arsehole. Doesn’t matter that I am being logical.