Incredible. The medical community as a whole needs to be retrained when it comes to women’s ailments. I was having heart issues and they kept chalking it up to anxiety. It wasn’t. It was a long-Covid symptom of Ehlers-Danlos Asynd try one which I self diagnosed and then was confirmed by genetic testing. I mean come on. We shouldn’t have to take things into our own hands or be made to feel like we’re crazy. I’m so so glad you got a solid diagnosis and wish you all the best in the recovery!
Whoa. My husband has very similar sleep struggles. I am sending him to an ENT, right away. I am sorry you lived with this for so long. And, you're right, we have to stop telling reasonable (or, in my case, possibly unreasonable) people it's all in their head, just because we don't know the answer. We know our bodies. How about, "I believe you, but I don't know what's causing it yet. We'll keep thinking and looking for a solution."
Courtney - So beautiful and sad. The dismissal of women’s health issues by medical professionals (and not always just the male doctors) is heartbreaking. And that it continues is just a reflection of women’s status in this country and in the world -- as less than. There was a lot of “Believe Women” support during the Me Too movement and I wish it hadn’t stopped there. I wish we were all taken seriously, supported and understood as human beings. I hope your diagnosis will lead to the best sleep of your life (even better than from the Twilight during a colonoscopy!) 💛
This brought me to tears because it hit so close to home. I also dealt with a horrific breathing issue which many doctors ignored because they couldn't figure it out...the medical gaslighting for women is so very real. An ENT also saved me with a diagnosis of extreme vocal cord dysfunction, apparently an undiagnosed lifelong condition exacerbated by doctors giving me too many steroids because I had labored breathing (from the undiagnosed but mild VCD flare-ups). My nervous system basically imploded after that. And once I was able to get out of bed again, I felt like I was being choked all of the time. At its worst, my throat seemed to close completely. I wasn't sleeping either...and nothing is worse than not sleeping. At my lowest point (a year or so ago), I was barely functioning...just spending my days focused on breathing and trying to hold onto my sanity. After a year of absolute misery, an ENT scoped my throat and in 30 seconds made the diagnosis and basically said, “Of course you feel like you’re being choked…your throat is literally closing up at random times.” I cried with the validation of it all. I'm now operating at about 95%, which feels amazing since I wasn't sure I'd ever feel like myself again. I'm truly so happy for you...a diagnosis like that can be so empowering. And thank you for sharing…reading something like this is exactly the kind of thing that would’ve kept me going on my worst days, and I know there are those who are in those days right now and need this. (Heck, even now it feels validating!)
Would you like to know why people adore you and your writing? You are a soul-bearing, and incredibly sharing person. I, too, have sleep issues, so this hit home. Thank you for being a truth-bearer for us!
I’m mad for you. Report back, please, on how this may finally resolve. I’m an animal when my sleep is disturbed. That you’ve been going through this your whole life just freaken stuns me. Shit.
I appreciate this post so much because I have an eight year old who has an appointment with an orthodontist next week (as insisted upon by his dentist). I’m armed to the teeth (pun intended) with all the recent studies showing how early orthodontic intervention actually causes more problems than it solves. My intro into this world came through James Nestor’s book Breathe (highly recommend). Your story is not anecdotal, the newer research supports your experience exactly. Unfortunately, I’ve heard it takes 17 years for new research to be adopted into practice by clinicians.
And thank you for sharing this part: "Basically, when you got braces, your jaw wasn’t done growing. Your tongue kept growing, but your jaw’s growth was stunted and now you can’t breathe properly, especially at night where you’re basically choked by your own tongue.” We are about to get braces or invisalines for our son. Aren't the jaws of most kids still growing when kids get braces? How do we avoid him having a similar problem is what I'll ask his dentist. This at least gives me something that I now know to discuss with the doctor before we make a decision.
Thank you for this. I struggle with insomnia as well and can either have trouble falling asleep or staying asleep. It's really a crap shoot as to which flavor I'll get on any given night. I'm not a big fan of Ambien, but it gets me to sleep. It also has the added "bonus" of short term amnesia. During one stretch with Ambien, I read a book and don't remember any of it. So I read it again and realized I didn't like it all that much anyway. Ok, jokes aside. Insomnia sucks. I have yet to do the sleep study but I believe it will happen soon. It rather pisses me off that your concerns were brushed aside for so long, but am glad that you now have a diagnosis and a path forward.
Oh my. What a horrific and sad story. I am furious for you for all those years lost. I am so glad you saw an ENT who knew immediately what was wrong. Thank you to Dr. O'Brien! I work for a nonprofit, the Gold Foundation, that champions humanism in healthcare, and we have an annual ritual for medical and nursing students called the White Coat Ceremony that involves students getting their first white coat, an oath to compassionate patient care, and a speech about the importance of humanism. The speech usually by a distinguished leader in healthcare, but maybe it should be by a patient. A patient who can describe what a humanistic appointment should feel like. I wonder if that would be unforgettable. I wonder if that could help shift the culture from some doctors not believing a patient to acknowledging their suffering and saying honestly that they don't know yet what's wrong. I'm so sorry you went through all of this, Courtney. I hope the upcoming tests shed light on how to fix this, and you have amazing sleep in your future! Bring on the well-rested Courtney!
Early on during the pandemic, I couldn't easily reach my regular GP and saw a different doctor and on the second time we met, he said, 'I believe you can feel a lot better than this and I'd like to help you.' I recognised the value and rarity of this. Gradually we worked through many issues. Seeing an ENT was only one small part of that, resulting in having my enormous tonsils removed and nose surgery to help me breathe easily. The ENT surgeon said I would feel miserable after the procedure and I did - it was the toughest post-op experience of all I've had. But soon I felt so much better because of this and the other things we addressed.
I had not been breathing easily or efficiently, for six decades. I'm not sure where I would be now if that doctor had not seen me as I was and as I could be.
Unacceptable!! These kind of stories are ev. er. y. where.... My own involves walking around my college campus with a life threatening pulmonary embolism for a week longer than I had to ...and all the following life-changing complications from the PE that got that much worse. Many of these stories are still in the making. It is so sad, so angering, and for the receiving end it is so full of grief, which you speak of and I relate to so much. We have few words and little way to make meaning of grief in these types of situations - another extension of that silencing of women's pain - it's all, "aren't you happy you know now?" I hope you eventually write more about this experience. Sending love.
Wow, this is so special to read having just finished Year of the Horses a few weeks ago. What an f-ing narrative arc. It's a huge reminder of how easy it is for a real problem to get sucked into the psychosomatic-just-fix-it-by-adjusting-your-lifestyle trap until decades have gone by and we've just made ourselves crazy with a problem.
Oof, this made me tear up. I was also gaslit by the medical community for years. I had to beg for tests and scans. I'm recovered now (after surgery, after finally finding a doctor who listened) but whenever I hear a story like this, the emotions come rushing back. There are so many of us with stories like this, living with pain that we're told isn't real. It is infuriating.
Incredible. The medical community as a whole needs to be retrained when it comes to women’s ailments. I was having heart issues and they kept chalking it up to anxiety. It wasn’t. It was a long-Covid symptom of Ehlers-Danlos Asynd try one which I self diagnosed and then was confirmed by genetic testing. I mean come on. We shouldn’t have to take things into our own hands or be made to feel like we’re crazy. I’m so so glad you got a solid diagnosis and wish you all the best in the recovery!
Whoa. My husband has very similar sleep struggles. I am sending him to an ENT, right away. I am sorry you lived with this for so long. And, you're right, we have to stop telling reasonable (or, in my case, possibly unreasonable) people it's all in their head, just because we don't know the answer. We know our bodies. How about, "I believe you, but I don't know what's causing it yet. We'll keep thinking and looking for a solution."
Courtney - So beautiful and sad. The dismissal of women’s health issues by medical professionals (and not always just the male doctors) is heartbreaking. And that it continues is just a reflection of women’s status in this country and in the world -- as less than. There was a lot of “Believe Women” support during the Me Too movement and I wish it hadn’t stopped there. I wish we were all taken seriously, supported and understood as human beings. I hope your diagnosis will lead to the best sleep of your life (even better than from the Twilight during a colonoscopy!) 💛
This brought me to tears because it hit so close to home. I also dealt with a horrific breathing issue which many doctors ignored because they couldn't figure it out...the medical gaslighting for women is so very real. An ENT also saved me with a diagnosis of extreme vocal cord dysfunction, apparently an undiagnosed lifelong condition exacerbated by doctors giving me too many steroids because I had labored breathing (from the undiagnosed but mild VCD flare-ups). My nervous system basically imploded after that. And once I was able to get out of bed again, I felt like I was being choked all of the time. At its worst, my throat seemed to close completely. I wasn't sleeping either...and nothing is worse than not sleeping. At my lowest point (a year or so ago), I was barely functioning...just spending my days focused on breathing and trying to hold onto my sanity. After a year of absolute misery, an ENT scoped my throat and in 30 seconds made the diagnosis and basically said, “Of course you feel like you’re being choked…your throat is literally closing up at random times.” I cried with the validation of it all. I'm now operating at about 95%, which feels amazing since I wasn't sure I'd ever feel like myself again. I'm truly so happy for you...a diagnosis like that can be so empowering. And thank you for sharing…reading something like this is exactly the kind of thing that would’ve kept me going on my worst days, and I know there are those who are in those days right now and need this. (Heck, even now it feels validating!)
Would you like to know why people adore you and your writing? You are a soul-bearing, and incredibly sharing person. I, too, have sleep issues, so this hit home. Thank you for being a truth-bearer for us!
I’m mad for you. Report back, please, on how this may finally resolve. I’m an animal when my sleep is disturbed. That you’ve been going through this your whole life just freaken stuns me. Shit.
I appreciate this post so much because I have an eight year old who has an appointment with an orthodontist next week (as insisted upon by his dentist). I’m armed to the teeth (pun intended) with all the recent studies showing how early orthodontic intervention actually causes more problems than it solves. My intro into this world came through James Nestor’s book Breathe (highly recommend). Your story is not anecdotal, the newer research supports your experience exactly. Unfortunately, I’ve heard it takes 17 years for new research to be adopted into practice by clinicians.
And thank you for sharing this part: "Basically, when you got braces, your jaw wasn’t done growing. Your tongue kept growing, but your jaw’s growth was stunted and now you can’t breathe properly, especially at night where you’re basically choked by your own tongue.” We are about to get braces or invisalines for our son. Aren't the jaws of most kids still growing when kids get braces? How do we avoid him having a similar problem is what I'll ask his dentist. This at least gives me something that I now know to discuss with the doctor before we make a decision.
Thank you for this. I struggle with insomnia as well and can either have trouble falling asleep or staying asleep. It's really a crap shoot as to which flavor I'll get on any given night. I'm not a big fan of Ambien, but it gets me to sleep. It also has the added "bonus" of short term amnesia. During one stretch with Ambien, I read a book and don't remember any of it. So I read it again and realized I didn't like it all that much anyway. Ok, jokes aside. Insomnia sucks. I have yet to do the sleep study but I believe it will happen soon. It rather pisses me off that your concerns were brushed aside for so long, but am glad that you now have a diagnosis and a path forward.
Oh my. What a horrific and sad story. I am furious for you for all those years lost. I am so glad you saw an ENT who knew immediately what was wrong. Thank you to Dr. O'Brien! I work for a nonprofit, the Gold Foundation, that champions humanism in healthcare, and we have an annual ritual for medical and nursing students called the White Coat Ceremony that involves students getting their first white coat, an oath to compassionate patient care, and a speech about the importance of humanism. The speech usually by a distinguished leader in healthcare, but maybe it should be by a patient. A patient who can describe what a humanistic appointment should feel like. I wonder if that would be unforgettable. I wonder if that could help shift the culture from some doctors not believing a patient to acknowledging their suffering and saying honestly that they don't know yet what's wrong. I'm so sorry you went through all of this, Courtney. I hope the upcoming tests shed light on how to fix this, and you have amazing sleep in your future! Bring on the well-rested Courtney!
Early on during the pandemic, I couldn't easily reach my regular GP and saw a different doctor and on the second time we met, he said, 'I believe you can feel a lot better than this and I'd like to help you.' I recognised the value and rarity of this. Gradually we worked through many issues. Seeing an ENT was only one small part of that, resulting in having my enormous tonsils removed and nose surgery to help me breathe easily. The ENT surgeon said I would feel miserable after the procedure and I did - it was the toughest post-op experience of all I've had. But soon I felt so much better because of this and the other things we addressed.
I had not been breathing easily or efficiently, for six decades. I'm not sure where I would be now if that doctor had not seen me as I was and as I could be.
Unacceptable!! These kind of stories are ev. er. y. where.... My own involves walking around my college campus with a life threatening pulmonary embolism for a week longer than I had to ...and all the following life-changing complications from the PE that got that much worse. Many of these stories are still in the making. It is so sad, so angering, and for the receiving end it is so full of grief, which you speak of and I relate to so much. We have few words and little way to make meaning of grief in these types of situations - another extension of that silencing of women's pain - it's all, "aren't you happy you know now?" I hope you eventually write more about this experience. Sending love.
All of a sudden I’m pleased my parents couldn’t afford to get me braces!
Grateful that you shared all of this and extra appreciative that you articulated all the grief that comes with it.
Wow, this is so special to read having just finished Year of the Horses a few weeks ago. What an f-ing narrative arc. It's a huge reminder of how easy it is for a real problem to get sucked into the psychosomatic-just-fix-it-by-adjusting-your-lifestyle trap until decades have gone by and we've just made ourselves crazy with a problem.
Oof, this made me tear up. I was also gaslit by the medical community for years. I had to beg for tests and scans. I'm recovered now (after surgery, after finally finding a doctor who listened) but whenever I hear a story like this, the emotions come rushing back. There are so many of us with stories like this, living with pain that we're told isn't real. It is infuriating.