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Transcript

Why "Fatigue" Doesn't Capture It – Reviewing The Invisible Kingdom by Meghan O'Rourke · Health with Hashimoto’s - Thyroid or Immune Education for Autoimmune Thyroid Disease

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  Welcome to a bonus episode of the Health with Hashimoto's podcast.
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  On bonus episodes, I do book reviews.
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  I would love to know what books I should be reading next. What do you recommend?
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  Let's talk about it. Hop over to the Health with Hashimoto's community over
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  on school.com, S-K-O-L.com, and let me know what books I should be reading next.
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  For any book that I give a positive book review to, there will be an affiliate
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  link down in the show notes.
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  Of course, you can still go to your local library and support your local bookstore.
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  Amazon is just available for everybody, so the affiliate link is down there.
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  Today we're talking about the book The Invisible Kingdom, Reimagining Chronic Illness.
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  This is a memoir written by Megan O'Rourke.
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  I listened to the audiobook, which has her as the narrator, which I really love in a memoir.
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  There's just something about hearing the person talking who also wrote it.
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  You're listening, basically, their autobiography, except a memoir is more...
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  More about one specific thing. And in this case, Megan O'Rourke has had a couple
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  decades of just feeling off, feeling completely fatigued, not even having the
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  words to describe what she's feeling.
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  She said multiple times, like, you say the word fatigue, and people think tired.
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  People who have actually lived with Hashimoto's or fibromyalgia or Lyme's disease.
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  Like, they understand fatigue on a completely different level than the average person.
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  So there's just something about listening to the actual author narrate their own book.
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  And so I really liked the audiobook version of this. I thought she did a really
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  good job with that narration, and her story is very good.
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  So I'll read a little bit from the back of the cover. You can read the whole back of the cover.
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  It says, A silent epidemic of chronic illness affects tens of millions of Americans.
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  These are diseases that are poorly understood, frequently marginalized,
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  and can go undiagnosed and unrecognized altogether.
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  Skipping down to the third paragraph, drawing on her own medical experience
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  as well as a decade of interviews with doctors, patients, researchers,
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  and public health experts.
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  O'Rourke traces the history of Western definitions of illness and reveals how
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  inherited ideas of cause,
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  diagnosis, and treatment have led us to ignore a host of hard-to-understand
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  medical conditions, One that resists easy descriptions or simple cures.
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  And I really appreciated her story.
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  Now, the thing with memoirs is you're not always going to agree with everything
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  that the main person is going through.
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  For example, there are some parts of her worldview that I do not agree with.
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  Her perception of COVID, everything that led to COVID, everything that happened
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  because of it is really...
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  Completely different than my perception of that same period of history and everything
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  that went into it and resulted from it.
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  But we both lived through it, and I love to hear the stories.
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  Her story of all of her illnesses and the problems that she experienced started long before COVID.
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  She has been dealing with things for a couple decades and trying to get answers.
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  Hashimoto's is one of the things that she has been diagnosed with.
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  It was actually, I believe, the first diagnosis that she received.
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  And since then, she's had several more.
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  The story is good. I highly recommend this book because, for one,
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  it's nice to feel like you're not alone.
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  If you have Hashimoto's or if you have family that has Hashimoto's,
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  listening to somebody else's story, you're just going to resonate with a lot of it.
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  Like, oh, yeah, I've been there. Oh, yeah, I've been dismissed by doctors.
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  Oh, spending tons of time trying to coordinate medical care,
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  trying to, you know, get medical records from this medical system to another
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  medical system where they should just be able to talk easy, but yet it's on
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  me as the patient trying to coordinate it.
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  Like, it's gonna, you're gonna be like, oh yeah, I've been there, done that.
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  And it's just nice to hear somebody else's story.
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  Another thing I really appreciated about this book is it's not a fairy tale.
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  You're not going to get a happy ending.
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  There's no magic happily ever after.
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  Like, I had this struggle, and then I got this diagnosis, and then I did X,
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  Y, and Z, and now I am fully healthy, fully well, and thriving in life. It's not that story.
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  It's, I had this problem, and I searched for solutions, and I finally got some,
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  and then I was still having problems.
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  And I kept searching, and I found other little bits of a solution.
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  And here is how I'm doing now. And I mean, disclaimer.
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  Spoiler, I guess, she's doing much better now.
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  She has had several different things that made significant differences,
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  especially when she figured out, I don't think I'm spoiling anything by saying
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  that she figured out that she had Lyme's.
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  And so getting treatment for that was obviously far different than getting treatment
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  for or dealing with Hashimoto's.
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  So I love the fact that she doesn't shy away from that.
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  She's not saying, I'm going to give you a happy ending. she's saying
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  this is my story this is my struggle and I
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  hope it helps you as maybe you can relate to
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  it she also emphasizes the
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  fact that illness and chronic illness is not a gift she was having a conversation
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  with a friend and the friend brought up something about like what good has come
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  from this or what have you learned and I'm sure you have heard that too like
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  yes you have Hashimoto's, you have an autoimmune condition.
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  How is your life better now because of that diagnosis?
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  How have you changed things? I mean, for me, I have cleaned up everything in
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  our house, like chemicals and cleaners, the foods we eat, the things that we're exposed to.
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  All of that is different for my entire family because of my journey with health.
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  And hopefully or probably for you, it's the same thing.
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  But one thing she said is, illness is not a gift.
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  It is a bad thing. Nobody wants to be chronically ill.
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  Nobody wants to have an autoimmune condition. It is not a good thing.
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  Even though good can come from it, even though we can learn things and implement
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  them in our lives, the illness itself is not a gift. I appreciated that she
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  said that and said that so well. She said it better than I just did.
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  Another thing she talked about in the book is that what a burden it is to be the patient.
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  If you have cancer, there's a cancer center and everybody coordinates care around
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  the person and around what they are going through.
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  If you have an autoimmune condition or Lyme's or anything like that, there is not that.
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  So managing your care and trying to make sure everybody has what they need is a big job.
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  At one point in time, she calculated all of the hours in a month that she was
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  spending coordinating her own care,
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  calling doctors' offices and trying to get the information from,
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  you know, clinic A to specialist B and all labs and tests, all of that.
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  And it was days out of every month that she was spending just trying to coordinate her care.
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  Here's a little bit of a clip from one of the interviews that she's doing in
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  the book. I asked Cutler why no one seemed to be organizing and managing care,
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  offering advice about how to manage illnesses that seem to respond to sleep, diet, and so forth.
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  Doctors are not trained to do this, Cutler said. A doctor is trained like a tradesman.
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  A surgeon is trained to cut you open. A plumber is trained to fix your pipes.
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  A dermatologist is trained to check your skin.
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  They're not trained to manage you. So someone has to step into that role.
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  That's the biggest missing thing in health care, in part because the economics
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  don't work or haven't worked.
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  What always strikes me, who are the three highest paid people on the football team?
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  The quarterback, the left tackle, the person who protects the quarterback from
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  the blindside, and the coach.
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  What is the coach getting paid for? He never touches the ball during the game. He's not very fit.
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  But he's bringing everything together.
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  He's paid to bring all this together.
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  No one does this for your health. She is completely spot on in that observation.
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  Most of the story, most of the book, like the first two thirds is her story.
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  And there are interviews interspersed in there. The last section is solutions.
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  And that's one thing that she's saying we need a solution for.
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  And I would love to offer myself as the solution for that.
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  However, I'm not big enough to do that for everybody with autoimmune conditions.
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  As she said, or as the back of the book said, it's tens of millions of Americans.
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  And then you add in all of the people from Europe and Australia,
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  like all over the world that are dealing with this.
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  So I am not going to manage everybody's care
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  but what I have to offer you is
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  the Hashimoto's root cause reset where I teach you not necessarily how to manage
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  your care I'm not going to teach you you know how to call a doctor's office
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  and how to get medical records switched but what I'm going to teach you is how
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  to identify your own root causes and how to be the CEO of your health how to make those decisions.
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  Every single provider, specialist, you know, medical person is on your team.
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  They're on your like board of directors, but you are the one calling the shots. You are the CEO.
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  And that is one thing I help you figure out is how to best function in that role as CEO.
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  So I agree with her.
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  We do need a solution to help people navigate this.
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  And hopefully the Hashimoto's root cause reset is just a tiny piece of that puzzle.
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  And I can help so many people through that root cause reset.
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  It's something that we all need. We all need to know what are our root causes
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  and how can I move forward.
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  So I give this book, before I give you my star rating, let me tell you how I rate books.
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  I am on Storygraph and I have a very specific rating system that I use.
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  It's the original Goodreads rating system, which is not the Amazon rating system.
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  The Amazon rating system, basically, if you received it and it's not broken, it's five stars.
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  But that's not the original rating system for Goodreads.
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  When I am going back through my ratings, if I see a five star,
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  I want it to mean more than I received it.
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  It was in good condition and, you know, I read it. So here are my ratings.
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  Five stars is it was amazing.
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  I will read it again and or this will change my life.
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  A four stars is I really liked it. Three stars is average for me.
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  Most books that I read get three stars. And three stars is I liked it.
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  Two stars, it was okay. One star, I didn't like it. I give this book four stars.
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  It's not going to change my life. It resonated with me.
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  A lot of the things that she said, I was like, oh yeah, I completely agree.
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  Or I've been through that.
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  I completely identify with that. When she's talking about the fatigue and it
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  being more than just being tired.
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  There's a lot of things in the book that you're going to be able to relate to.
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  I don't think this book is going to change my life. It didn't help me see root causes in a new way.
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  So I'm giving it four stars. I highly recommend it.
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  Go check it out at your local library, buy it from a local bookstore,
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  or hop down to the show notes and get it from Amazon.
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  This podcast is for informational and educational purposes only.
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  Please discuss any questions or concerns with your healthcare professional.
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  No statements have been evaluated by the food and drug administration,
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  and any products mentioned are not intended to diagnose, treat,
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  cure, or prevent any disease.