I got so many powerful responses to my essay on Wednesday that it made me want to hear more. What is a moment when you were in a medical setting and either advocated for your own knowing about your body or the bodies of your loved ones, or had a professional actually empower you to do so through a great question?
And if you’re into this topic, might I suggest checking out Maya Dusenberry’s exhaustively researched, infuriating book, Doing Harm, or subscribing to her newsletter?
(FYI, I’m going to be trying out this discussion function on Substack for a few weeks, so do let me know if you’re into it. So many of you are so amazing and I want you to know and learn from one another! I feel selfish soaking up all your amazing wisdom in personal responses I’ve been getting.)
As the wife of a medical provider -- someone I know to be deeply caring, who always puts the patient first, ahead of his own time or interests -- I would urge everyone to try and see the good in the medical community. Providers are often doing their very best to get to the heart of an issue, to treat it conservatively (to "do no harm") while also making a patient more comfortable. Our doctors do have limits - they do not always have an immediate answer to a complicated problem, and it can take time, time that is hard for a patient to endure -- to get to the heart of an issue. There are, as an in any profession, folks who aren't great at their jobs. There are also relationships that don't work, as one with your doctor requires some chemistry and trust. If you're struggling, get that second opinion. Trust your gut. But also know your doctors are humans, too, many of them with families, like you, who are trying to do their best.
Yes! This is really wise. We can't expect our doctors (or our teachers or our therapists or our parents...) to be perfect, because we're all imperfect. But I also love the idea of encouraging people to trust their gut about how the relationship feels to them. (And truth be told, some people want a more authoritative doctor, so that might be a good fit for many.)
After a lifetime of negotiating health care for myself and my family I’ve come to the conclusion that any practitioner I see is basically a consultant with a particular kind of knowledge, context and skill set. And it’s my job to listen carefully, ask good questions and make my own decision based on unique knowledge and intuition concerning my or my family member’s history and best interests. And even then the action is a process or a path, often with unexpected turns.
Thanks for raising this - I’ve written a little about this and work with families on this topic. I wrote something for Rare Disease Day about the medical community. I invite you to take a look: https://unreasonable.substack.com/p/parenting-rare-in-the-age-of-gene. I’m glad you’re beginning this conversation; it’s something many of us raising children with disabilities and special health needs talk about a lot. ❤️
Thank you so much for connecting this community with these resources. Of course! I can only imagine how much more of a conversation this already is in that community. Those of us with able-bodied kids (for now, at least) have the privilege of not having to learn how to be advocates in the same way, but it's also a disadvantage when it comes time to actually do it. We have a lot to learn from you all.
I think the greatest thing about your most recent piece is that it is helping to normalize the concept that parents know their children really well. This concept that families are partners alongside medical professionals - it really shouldn’t be that foreign, yet somehow we’re so disempowered at some point by the medical system that what should be the norm surprises us all. I’m glad you had the experience you did.
My 7yo daughter is something called "twice exceptional" — meaning, she has an above-average IQ (exception-from-the-supposed-norm-#1) and she also has ADHD and sensory issues (exception-from-the-supposed-norm-#2). It's been a huge journey emotionally, financially, and legally to get her the support she needs. Last year, I was sitting at an appointment with her and the nurse practitioner who prescribed the ADHD meds she was trying out (with no visible impact). I mentioned that I increasingly suspected anxiety was part of the picture, which, by the way, I have. The NP and I talked about the possibility of trying Prozac, and of course, if we did that, it would be instead of trying the next ADHD med (only one variable at once). I asked what she recommended, and she said, "Your intuition as a parent is worth a lot. What feels right to you?" I said, "Trying Prozac." So we did... and within 6 weeks, the effects were literally life-changing. My daughter no longer had multiple meltdowns daily. She was happy. Turns out, her ADHD accounts for her impulsivity, challenges with executive functioning, and nonstop energy, but NOT her "emotional dis-regulation" (meltdowns) — that was all anxiety. I am so grateful that this health care provider encouraged me to trust my gut and that she honored the power and legitimacy of gut instinct, or intuition.
I thought about this after I read your article. When I was pregnant with my first, I had a midwife who I decided to work with specifically because I thought she would empower me through the birth process. When I started talking to her about my birth plan, she started laughing and said, “ If you bring that into the hospital, you’re definitely getting a C-section.“ 😑 I was so shocked that I said nothing and then spent the next month agonizing about whether I needed to choose a different provider. When I went in for my next appointment I said, “You know, it really bothered me what you said about my birth plan. This is important to me, and I know it all won’t go the way I want it to go, and I know I have very little control over certain things, but I have done my research and I need you to support me in this.“ She was completely apologetic and agreed that it was a joke that was common among the OB/GYN profession, but that it was completely inappropriate for her to say to me. She ended up being a powerful advocate for me in having the hospital birth that I wanted, but she also helped me not take myself so seriously. That was probably the first time I have ever “stood up to” a medical professional and it was life-changing.
What I love SO much about this story is that you didn't just listen to your own knowing, but you gave the doctor a chance (ala the earlier comment) to rise to the occasion after making a mistake. I have a lot to learn in this anecdote. I find this kind of conflict, especially with someone I consider an authority figure, daunting and so mostly avoid it. Which is not healthy! I'm going to remember you next time I think about doing that.
When my 70 year old mother was dying of cancer, her oncologist looked at her and spoke TO HER. All the other doctors spoke to me (as her caregiver). They treated her as an idiot. She was a brilliant, understanding woman who just happened to have cancer.
I've been dealing with an overactive bladder for a few years and the first urologist I saw (a male), told me after a couple basic tests came back negative to "not pathologize" myself, and that everyone is different, and how he has trained his bladder to pee before his 8 hour surgeries so he doesn't have to go during them. (Real comfort to someone who was peeing every hour). I saw two more female specialists, both of whom were better, but had no interest in finding the root cause of the problem, so I'm currently working with a naturopathic doctor. My first appointment with her was nearly 2 hours long, where she listened and asked extensive questions about my symptoms and medical history--the difference was stark, and incredibly affirming.
Your piece gave me courage to stick up for "my feeling" in a different context -- advocating for a school placement for my severely disabled daughter, so thank you! <3
In medical situations, my experiences have been all over the place. My daughter has a rare syndrome and yes it's true that in a lot of situations I know as much or more than they do. Like, it didn't feel great when a pediatric geneticist gave me a print-out of a study I'd easily found online. But there have been crucial instances in which "my feeling" was flat-out wrong and I needed the forceful recommendation of a doctor. If we'd gone on my feeling about whether or not my daughter needed open-heart surgery to correct a congenital heart defect, she wouldn't have undergone a terrifying-to-me but simple-to-him operation. (My feeling was fear.)
More recently, my feeling is what kept me from calling the pediatrician about my daughter's terrible sleep patterns. I'd read a bunch of stuff online about how disabled kids have sleep disturbances and figured that's what the doctor would tell me, too. At the advice of a sleep consultant -- whom I hired btw because I thought she would support, not deny, my feelings as a stressed out mom who knows her kid best -- I finally broke down and called the doctor. Not only was the fix (a 1/2 tsp of Miralax daily to relieve her constipation) immediate -- it was also cheap and simple to implement! My feeling in this case had led me astray and cost me SIX MONTHS of lost sleep.
So I think the moral of the story, my story at least, is to give doctors the benefit of the doubt. Certainly don't be so skeptical so as to avoid them like I did. State your feeling, even if they don't ask or if doesn't feel welcome. In some cases it might change the course, in others it won't. In the end, doctors are obligated to do what's best for the patient, so at least we have that as a check if our feelings, always right to have, lead us down the wrong course.
This is so helpful and so insightful. I think giving the doctor and yourself the benefit of the doubt is the name of the game. I suppose the better we know ourselves as patients, the better we understand whether we have a pattern of trusting the doctor above and in spite of ourselves or whether we don't always listen well to what doctors have to say and need to try to stay open. Helpful to be reminded that self-knowledge is actually where it's at either way.
When I was 32, I needed to “exchange” an original IUD (mirena) with a new one. This procedure involved a practitioner essentially reaching inside of me to remove the original one and then put a new one in. I had a surprisingly life-shifting experience when, at the moment the first one had been pulled out, and the team was about immediately swap it out, I (fairly timidly) asked if I could have a minute before the next one was inserted. It was such an intense procedure, that that’s what my body seemed to need. I knew there were other patients in other rooms, and I think that - not slowing things down for other people - was literally the thing keeping me from being more assertive with my request. I’m grateful I asked though, because everyone in the room stopped and was willing to accommodate that request.
It was such a small moment - maybe 2-3 minutes of time, but it was transformative and gave Me a ton to reflect about re: systems, socialization, etc.
Wow, what a cool story. More for my patient inspiration file. Not only listening to your body for what it needed but having the courage to ask for it, and what a small ask! I think a lot of us overestimate the weight of our asks on others. I love this. Who knows? Maybe next time they asked the patient, "Do you want a minute?" and she so needed it.
Thanks, Courtney! I just wrote about this very thing last week - advocating for my son born with a rare disease and how I had to keep looking for answers when many medical folks couldn't help. The most frustrating thing was when I brought up how he cried and cried across the night to so many different medical folks, I got silence, was told to let him cry it out, was told it was reflux, was literally asked if the room was too warm... none of that seemed right to me and finally, I learned from a specialist that he has a bladder that doesn't work and he was waking from the pain of bladder spasms.... https://www.huffpost.com/entry/rare-disease-imperforate-anus_n_5e4d6874c5b6b0f6bff2f049
I saw this documentary last night, Medicating Normal, and its theme, in essence, is also about people living with mental illness taking back control from the medical/psychiatry establishment. https://medicatingnormal.com
I can't say I've ever had a really disempowering experience in a hospital, but based on what I've read (including Maya's book!) I knew I wanted to give birth at home. There were so many parts of that experience which were amazing but I'll describe one particularly special moment:
I had been in labor for close to 32 hours and was standing pushing my baby's head out when my contractions stopped. My midwife knew that his head had been squished longer than was ideal, so told me I needed to get him out. I gave it everything I had and slowly, he descended and was born, but with very labored breathing as he'd swallowed some mucus. I learned later that in a hospital setting he would have been immediately taken from me, but my midwives put him straight on my chest, then instructed me to give him mouth-to-mouth. Together through massaging his back, mouth-to-mouth and patience, we got his lungs cleared and he started crying.
That experience could have been so scary and made me feel helpless. But my midwives made me part of the process and stayed so calm and peaceful that it didn't even occur to me to be frightened for my baby. In fact it was only later talking to my husband, who was terrified when he saw that the baby wasn't crying, that I even really processed what happened! I was smiling through the whole thing, but moving as efficiently as I could.
As the wife of a medical provider -- someone I know to be deeply caring, who always puts the patient first, ahead of his own time or interests -- I would urge everyone to try and see the good in the medical community. Providers are often doing their very best to get to the heart of an issue, to treat it conservatively (to "do no harm") while also making a patient more comfortable. Our doctors do have limits - they do not always have an immediate answer to a complicated problem, and it can take time, time that is hard for a patient to endure -- to get to the heart of an issue. There are, as an in any profession, folks who aren't great at their jobs. There are also relationships that don't work, as one with your doctor requires some chemistry and trust. If you're struggling, get that second opinion. Trust your gut. But also know your doctors are humans, too, many of them with families, like you, who are trying to do their best.
Yes! This is really wise. We can't expect our doctors (or our teachers or our therapists or our parents...) to be perfect, because we're all imperfect. But I also love the idea of encouraging people to trust their gut about how the relationship feels to them. (And truth be told, some people want a more authoritative doctor, so that might be a good fit for many.)
After a lifetime of negotiating health care for myself and my family I’ve come to the conclusion that any practitioner I see is basically a consultant with a particular kind of knowledge, context and skill set. And it’s my job to listen carefully, ask good questions and make my own decision based on unique knowledge and intuition concerning my or my family member’s history and best interests. And even then the action is a process or a path, often with unexpected turns.
Amazing perspective, Momma. I have seen this modeled by you, but very cool to hear it articulated so clearly. Wish it weren't so hard-earned.
Yes, they are a consultant and we should treat them as such. :^]
Thanks for raising this - I’ve written a little about this and work with families on this topic. I wrote something for Rare Disease Day about the medical community. I invite you to take a look: https://unreasonable.substack.com/p/parenting-rare-in-the-age-of-gene. I’m glad you’re beginning this conversation; it’s something many of us raising children with disabilities and special health needs talk about a lot. ❤️
Thank you so much for connecting this community with these resources. Of course! I can only imagine how much more of a conversation this already is in that community. Those of us with able-bodied kids (for now, at least) have the privilege of not having to learn how to be advocates in the same way, but it's also a disadvantage when it comes time to actually do it. We have a lot to learn from you all.
I think the greatest thing about your most recent piece is that it is helping to normalize the concept that parents know their children really well. This concept that families are partners alongside medical professionals - it really shouldn’t be that foreign, yet somehow we’re so disempowered at some point by the medical system that what should be the norm surprises us all. I’m glad you had the experience you did.
My 7yo daughter is something called "twice exceptional" — meaning, she has an above-average IQ (exception-from-the-supposed-norm-#1) and she also has ADHD and sensory issues (exception-from-the-supposed-norm-#2). It's been a huge journey emotionally, financially, and legally to get her the support she needs. Last year, I was sitting at an appointment with her and the nurse practitioner who prescribed the ADHD meds she was trying out (with no visible impact). I mentioned that I increasingly suspected anxiety was part of the picture, which, by the way, I have. The NP and I talked about the possibility of trying Prozac, and of course, if we did that, it would be instead of trying the next ADHD med (only one variable at once). I asked what she recommended, and she said, "Your intuition as a parent is worth a lot. What feels right to you?" I said, "Trying Prozac." So we did... and within 6 weeks, the effects were literally life-changing. My daughter no longer had multiple meltdowns daily. She was happy. Turns out, her ADHD accounts for her impulsivity, challenges with executive functioning, and nonstop energy, but NOT her "emotional dis-regulation" (meltdowns) — that was all anxiety. I am so grateful that this health care provider encouraged me to trust my gut and that she honored the power and legitimacy of gut instinct, or intuition.
Amazing. Thank goodness for this practitioner and your own courage and clarity! Hope your little one is thriving.
I thought about this after I read your article. When I was pregnant with my first, I had a midwife who I decided to work with specifically because I thought she would empower me through the birth process. When I started talking to her about my birth plan, she started laughing and said, “ If you bring that into the hospital, you’re definitely getting a C-section.“ 😑 I was so shocked that I said nothing and then spent the next month agonizing about whether I needed to choose a different provider. When I went in for my next appointment I said, “You know, it really bothered me what you said about my birth plan. This is important to me, and I know it all won’t go the way I want it to go, and I know I have very little control over certain things, but I have done my research and I need you to support me in this.“ She was completely apologetic and agreed that it was a joke that was common among the OB/GYN profession, but that it was completely inappropriate for her to say to me. She ended up being a powerful advocate for me in having the hospital birth that I wanted, but she also helped me not take myself so seriously. That was probably the first time I have ever “stood up to” a medical professional and it was life-changing.
What I love SO much about this story is that you didn't just listen to your own knowing, but you gave the doctor a chance (ala the earlier comment) to rise to the occasion after making a mistake. I have a lot to learn in this anecdote. I find this kind of conflict, especially with someone I consider an authority figure, daunting and so mostly avoid it. Which is not healthy! I'm going to remember you next time I think about doing that.
When my 70 year old mother was dying of cancer, her oncologist looked at her and spoke TO HER. All the other doctors spoke to me (as her caregiver). They treated her as an idiot. She was a brilliant, understanding woman who just happened to have cancer.
So important! It's not just the disarming question, but the disarming EYE CONTACT, that came make all the difference. Thanks for sharing.
I've been dealing with an overactive bladder for a few years and the first urologist I saw (a male), told me after a couple basic tests came back negative to "not pathologize" myself, and that everyone is different, and how he has trained his bladder to pee before his 8 hour surgeries so he doesn't have to go during them. (Real comfort to someone who was peeing every hour). I saw two more female specialists, both of whom were better, but had no interest in finding the root cause of the problem, so I'm currently working with a naturopathic doctor. My first appointment with her was nearly 2 hours long, where she listened and asked extensive questions about my symptoms and medical history--the difference was stark, and incredibly affirming.
So glad you are keepin on keepin on until you find someone that makes you feel listened to. Wishing you luck in getting to the bottom of it.
Your piece gave me courage to stick up for "my feeling" in a different context -- advocating for a school placement for my severely disabled daughter, so thank you! <3
In medical situations, my experiences have been all over the place. My daughter has a rare syndrome and yes it's true that in a lot of situations I know as much or more than they do. Like, it didn't feel great when a pediatric geneticist gave me a print-out of a study I'd easily found online. But there have been crucial instances in which "my feeling" was flat-out wrong and I needed the forceful recommendation of a doctor. If we'd gone on my feeling about whether or not my daughter needed open-heart surgery to correct a congenital heart defect, she wouldn't have undergone a terrifying-to-me but simple-to-him operation. (My feeling was fear.)
More recently, my feeling is what kept me from calling the pediatrician about my daughter's terrible sleep patterns. I'd read a bunch of stuff online about how disabled kids have sleep disturbances and figured that's what the doctor would tell me, too. At the advice of a sleep consultant -- whom I hired btw because I thought she would support, not deny, my feelings as a stressed out mom who knows her kid best -- I finally broke down and called the doctor. Not only was the fix (a 1/2 tsp of Miralax daily to relieve her constipation) immediate -- it was also cheap and simple to implement! My feeling in this case had led me astray and cost me SIX MONTHS of lost sleep.
So I think the moral of the story, my story at least, is to give doctors the benefit of the doubt. Certainly don't be so skeptical so as to avoid them like I did. State your feeling, even if they don't ask or if doesn't feel welcome. In some cases it might change the course, in others it won't. In the end, doctors are obligated to do what's best for the patient, so at least we have that as a check if our feelings, always right to have, lead us down the wrong course.
This is so helpful and so insightful. I think giving the doctor and yourself the benefit of the doubt is the name of the game. I suppose the better we know ourselves as patients, the better we understand whether we have a pattern of trusting the doctor above and in spite of ourselves or whether we don't always listen well to what doctors have to say and need to try to stay open. Helpful to be reminded that self-knowledge is actually where it's at either way.
Hey, I’m so glad to see the voice of another mom raising a child with a disability. ❤️
When I was 32, I needed to “exchange” an original IUD (mirena) with a new one. This procedure involved a practitioner essentially reaching inside of me to remove the original one and then put a new one in. I had a surprisingly life-shifting experience when, at the moment the first one had been pulled out, and the team was about immediately swap it out, I (fairly timidly) asked if I could have a minute before the next one was inserted. It was such an intense procedure, that that’s what my body seemed to need. I knew there were other patients in other rooms, and I think that - not slowing things down for other people - was literally the thing keeping me from being more assertive with my request. I’m grateful I asked though, because everyone in the room stopped and was willing to accommodate that request.
It was such a small moment - maybe 2-3 minutes of time, but it was transformative and gave Me a ton to reflect about re: systems, socialization, etc.
Wow, what a cool story. More for my patient inspiration file. Not only listening to your body for what it needed but having the courage to ask for it, and what a small ask! I think a lot of us overestimate the weight of our asks on others. I love this. Who knows? Maybe next time they asked the patient, "Do you want a minute?" and she so needed it.
Thanks, Courtney! I just wrote about this very thing last week - advocating for my son born with a rare disease and how I had to keep looking for answers when many medical folks couldn't help. The most frustrating thing was when I brought up how he cried and cried across the night to so many different medical folks, I got silence, was told to let him cry it out, was told it was reflux, was literally asked if the room was too warm... none of that seemed right to me and finally, I learned from a specialist that he has a bladder that doesn't work and he was waking from the pain of bladder spasms.... https://www.huffpost.com/entry/rare-disease-imperforate-anus_n_5e4d6874c5b6b0f6bff2f049
Holly I was just going to send this thread to you! So glad you already had it and hope you and baby E are doing well.
I have followed your journey on Facebook with some empathy and admiration, Holly. It's incredible how strong you've all been. Can't wait to read this.
I saw this documentary last night, Medicating Normal, and its theme, in essence, is also about people living with mental illness taking back control from the medical/psychiatry establishment. https://medicatingnormal.com
Oh wow, that sounds awesome. Thanks for the heads up. Such an important topic.
I can't say I've ever had a really disempowering experience in a hospital, but based on what I've read (including Maya's book!) I knew I wanted to give birth at home. There were so many parts of that experience which were amazing but I'll describe one particularly special moment:
I had been in labor for close to 32 hours and was standing pushing my baby's head out when my contractions stopped. My midwife knew that his head had been squished longer than was ideal, so told me I needed to get him out. I gave it everything I had and slowly, he descended and was born, but with very labored breathing as he'd swallowed some mucus. I learned later that in a hospital setting he would have been immediately taken from me, but my midwives put him straight on my chest, then instructed me to give him mouth-to-mouth. Together through massaging his back, mouth-to-mouth and patience, we got his lungs cleared and he started crying.
That experience could have been so scary and made me feel helpless. But my midwives made me part of the process and stayed so calm and peaceful that it didn't even occur to me to be frightened for my baby. In fact it was only later talking to my husband, who was terrified when he saw that the baby wasn't crying, that I even really processed what happened! I was smiling through the whole thing, but moving as efficiently as I could.
WOW! This is an incredible story. Thanks for sharing it.