120 Comments

Wow. This was like reading my own biography. I have chronic disturbed sleep, have been told all the things you have, and I had braces from about the time I was 9 to the time I was a senior in high school. I still struggle with sleep issues, have been told I have apnea, and have never been able to breathe right. I failed the CPAP, which is a monster of torture. I am having a fluoroscopy next month to see if my epiglottis is functioning properly. Thank you for this info! And I hope you find rest and solutions!

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My gosh- that is wild! I have to have surgery in April for a bunch of breathing problems I apparently have.

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Wow! What is the procedure called, if you don't mind me asking? Part of my current problems have to do with damage from intubation from a previous surgery on top of existing breathing issues, but no one is talking about any of it holistically. The medical establishment is so frustrating. TMI, but best of luck to you!

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I am scheduled for 1) Repair nasal valve 2) Septoplasty 3) Turbinate reduction. Post opp recovery is gonna be a bitch!

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Ugh. Sending luck and positive thoughts for easy recovery.

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ugh so happy / sad for you ❤️ and relate very much to getting a later-in-life diagnosis and being so filled with regret / sadness for a younger self who struggled needlessly

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Wow, incredible Courtney. While I am so glad you have received a diagnosis that helps you to move forward, I am so sorry that your issues were ignored and overlooked for so long, and am unsurprised. Awful. I had a similar issue with fibroids - told they should not be causing pain, what was I talking about, trying every remedy to cure... and then when I finally had surgery, the surgeon was like, "Oh, I knew exactly why you were in pain as soon as I opened you up. A 8 cm fibroid was hardened and sitting on your bladder." Anyways. The first and main thought I had after waking up from surgery was, "Why didn't I do this sooner?" I see you are thinking of surgery, and wishing you smooth healing and recovery - both mental and physical.

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This is so relatable as a woman who has been gaslit by medical providers and I'm SO hopeful for you that you are on a true path to finding healing and resolution for your sleep issues. How life-changing.

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I'm sorry that you had to deal with this nightmare of not being heard or helped for so long. Thanks for sharing this.

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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.

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Thank you Anna, and thank you so very much for reading my memoir!

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Whoa! What a story. I used to be an amazing sleeper. My husband used to joke, he was jealous, that I could get in a few extra minutes sleeping in the elevator on the way to work. My sleep pattern changed and you've given it a name-sleep maintenance insomnia-when I hit menopause. So though I have a cause that seems pretty evident I share the discomfort you experience. I used to panic that I'd never get back to sleep. I don't so much nowadays. And I'm a skilled napper. I love my naps. They're like a sacred space for me that I create in the middle of my day. Wishing you good luck with a remedy.

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Heartbreaking and infuriating. I am happy you found answers.

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Thanks so much for this! My husband has very similiar problems. He's a loud snorer with sleep maintenance insomnia. Thanks to this post, I'm sending him to an ENT right away!

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The best Valentines gift around!

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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!

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That sounds like a super moving ritual. Thanks for sharing and for reading the piece.

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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.

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Oh Marian! Thank you so much for sharing. If they suggest surgery for me maybe I can follow up and ask you a few questions? I don't know yet what they are going to suggest as I have my in depth exam next week.

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Courtney, I'd be happy to answer any questions or share any observations based on what you hear. It sounds like you have been coping as well as you could in the circumstances.

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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.

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It IS infuriating! It just doesn't make sense. I told a friend today that my experience with medical professionals was like being in an escape room with some smarmy dude watching me on a video knowing where the key/solution lay but I had to figure it out on my own.

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All I can say is a) I'm THRILLED you've finally been properly diagnosed, and b)holy cow, the gaslighting was far too real. My hope is that you sharing this will make others feel seen and heard and will be one more piece of info they can take to their medical providers to increase awareness around this issue. We are always our own best advocates, but the struggle is so very painful when we're continually told "it's all in our heads." Please keep us posted on what the next steps are in your healing journey to better sleep.

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Oh, Courtney... I am so sorry that it took this long to get properly diagnosed. I want to hug that little girl, too. So much healing will come from knowing it's a "real," that you are not "crazy." My friend's husband specializes in sleep disorders stemming from tongue issues. Happy to connect you. He's in Bloomington, Indiana. xox

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Thank you Barbara! My in depth exam is next week so I'll know more about what is needed then!

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I'm so excited for you to have a new plan, and the attendant hope. Years ago I saw a bunch of doctors for what I thought was asthma. It was GERD, and it resolved with a 40 lb weight loss. A bariatric surgeon made the diagnosis. Though I declined the offer of a surgical procedure, I still feel grateful that he put it all together for me! Pattern recognition is such a slippery part of medicine.

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It really is! Thank you for sharing.

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Wow. Just. Wow. I swear, as women we are expected to be sick/in pain/unable to have sexual pleasure/sleep/ have babies/maintain a decent job/lose weight/gain weight you name it---all while being told it's all our own damn fault. If only we lost weight/drank more water/ stopped eating carbs/ ate less meat/ ate more plants/drank less alcohol/drank less coffee/ worked out every day/ did yoga every other day/took these supplements/stopped taking those supplements/meditated/stopped being so uptight, right? It's not up to actual medical science to have to figure us out, right?

I am so happy you now have an answer and can move on and find solutions, Courtney.

Liz

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YES!! All of this!

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