Review: The Invisible Kingdom: Reimagining Chronic Illness by Meghan O'Rourke

 Dear Lit Loves,

Returning to my favorite genre this month, I read the memoir titled The Invisible Kingdom:  Reimagining Chronic Illness by Meghan O'Rourke.  I selected this book because like Ms. O'Rourke, I have experienced my life be turned upside down and inside out with chronic illness and autoimmune disease.  And as a fellow writer, I wanted to see how she tackled a memoir on chronic illness compared with how I have tried to write about my own struggles with chronic illness.  

Ms. O'Rourke takes a research, personal narrative, and empathetic approach to discussing her experiences with chronic illness.  Initially, like most of us with long-term chronic illness, she had no idea what the multitude of symptoms she was experiencing could be caused by.  Next, again like most of us living in the world of chronic illness, the author seeks answers from a multitude of physicians and medical specialists.  It did not surprise me that many physicians just "blew off" what was ailing her.  Heaven help us all if a doctor is unable to diagnose what ailment you have and additionally admit he/she does not know a way to treat your ailment.  Obviously, if that is the case, many doctors will just chalk it up to a patient being a hypochondriac or blame what symptoms you have on anxiety.  This is exactly what happened with my own experiences with multiple chronic illnesses since age eighteen and it did not surprise me that Ms. O'Rourke encountered the very same indifference in our health care system and with the many physicians who make up that medical system.  

The most difficult part sometimes is getting even one physician to listen to and hear you as a patient with an autoimmune disorder or chronic illness because most of them only have ten to fifteen minutes to spend with you in an office or patient room.  And then there is the idea that if you do not "look sick" then you appear just fine to the rest of the world.  Hence, those of us with chronic illness live in "The Invisible Kingdom".  Ms. O'Rourke does a superb job communicating her story of initially having a thyroid issue that leads to a possible Lyme disease diagnosis, and also Ehrler-Danlos Syndrome (connective tissue disorder involving skin and joints).  She tries integrative medicine to a much greater extent than I ever have or would.  I was a bit skeptical when she submitted to the "ozone and ultraviolet light therapy".  Chronic Lyme Disease markers in lab tests finally leads her to antibiotic therapy which begins the first success in her symptoms receding. 

Ms. O'Rourke did an excellent job of researching autoimmune disorders and chronic disease inclusive of her own in this book.  I learned more about Lyme disease in this book than I have from anyone I know who currently has chronic Lyme disease.  I appreciated her focus too on the importance of the microbiome and the health of the digestive tract.  I think having a healthy balance of good and bad bacteria in the gut is crucial to patients with chronic disease as well as autoimmune disease.  I'm not sure I would have been willing to go so far as to try one unusual technique she attempted to balance the bacteria in her gut, but I give her points for the courage to submit to the procedure.  And I greatly appreciated that she demonstrated how even she succumbed to a treatment that was definitely outlandish - a person can become so desperate for relief that they are willing to try almost anything.

The most moving part of the book for me was after all she went through to discover answers and find possible remedies to her symptoms, she looked back with grief on almost a decade of her life that she lost because she was dealing with chronic illness and how it can wreak havoc with your life.  For me, I have lost more than a decade as my journey with multiple chronic illnesses and an underlying autoimmune disorder began in my teens.  Additionally, there is such a need in our health care system for specific centers where specialists are located that deal exclusively with autoimmune disease and chronic illness along with medical specialists communicating with one another about a patient's symptoms, tests, treatment plan, and continuing care.  Most chronically ill patients are left to make sure each of our medical specialists are obtaining the information from our labs, testing, and treatments on our own.  The neurologist does not just reach out to communicate and collaborate with the rheumatologist.  And for a patient who is already carrying the load of chronic disease, it is like pushing a tractor-trailer up a hill to additionally keep all our specialists appraised on the dynamics and specifics of our case.  

And if there is one silver lining with respect to the Covid 19 pandemic, it is that a good portion of people are experiencing symptoms long-term even after the Covid infection has passed.  The medical community is going to be forced to start dealing in a more effective and collaborative fashion with a greater number of patients that have long-Covid and long-Covid is decisively also chronic illness which hopefully means our medical system will take a greater interest in doing a better job of funding, researching, and treating all patients with chronic illness.   As my dad has always said, "The squeaky wheel gets the grease" and with our world now facing possibly a greater number of people having long-Covid 19, maybe chronic disease will rise in priority now so that patients receive the validation and quality ongoing medical care they deserve and that should have been more effectively managed medically long before Covid 19 appeared on the horizon.

A well-written and soundly researched memoir!  Congrats Ms. O'Rourke!  I highly recommend this book.

Till my next review,

Grace (Amy)