Lupus

An Anthology of Chronic Illness Truths”*

I love
reading, but reading is one of the things that has taken a hit during the
quarantine. My attention span has suffered. “The Things We Don’t Say: An
Anthology of Chronic Illness Truths” by Julie Morgenlender came at the perfect
time. It even comes with a disclaimer that you don’t have to read it all at
once. I’ll have you know, I didn’t read it all at once, but I got about 100
pages in before I took a break.
The
stories contained within the book’s pages are just as heartbreaking as they are
all too familiar. They speak to the losses that we all have endured when having
to change our lives because of chronic illness. They speak to the relationships
that survive the confines of chronic illness and the ones that do not. They
speak of the guilt we feel for the things we can do and the things we cannot.
I think
the book also brings to light the disproportionate impact that chronic illness
has on women. Maybe men are afraid that sharing their chronic illness
experience will make them not seem as manly. So the few male stories in this
book make it unique and provide a perspective that isn’t always included in the
chronic illness narrative.
Just like
Marcia Allar’s “Life Savers,” the stories in this book come in different colors
and flavors. They are not one size fits all. Some are more narrative while
others are more “how to”.  
This book
takes me back to an experience I had early on in my chronic illness journey. I
had just finished my first year of graduate school, and was in the hospital
getting steroid infusions. I had never been in that environment before. The
girl in the chair next to me was being treated for cancer. I was trying to get
the nurses attention, and I asked the girl if we were allowed to listen to
IPods. She looked at me and said, “You can do whatever you need to, to get
through it.” At that moment, I felt like diagnosis didn’t necessarily matter in
terms of community. In that moment, our diagnoses didn’t matter, what mattered
was our shared experiences as chronically ill people. And this book left me
feeling the same way. I may not have fibromyalgia or ehler’s danlos or a host
of other conditions that the authors in this book write about, but regardless
of diagnosis, the lived experiences are much the same.
I related
to Katherine Ernst’s experience of a doctor questioning another doctor’s
diagnosis and asking why she hadn’t fought the other doctor, even when the new
doctor is asking her to trust them.
And as Sónia
Lopes writes, “But no one told me that the social aspect of living with a
chronic debilitating disease like this would be the hardest for me to manage.”

I’m struck
by how, 12 years into my illness journey, so little has changed. Young women
are going years with serious symptoms, battling to find doctors that will take
them seriously. Throughout, I found myself shaking my head, both in agreement
and dismay.

I want to
thank Julie Morgenlender and the other authors who contributed to this book for
sharing their stories.
 

Now more than ever, we need books like this. We need our
voices to be heard and our stories to be told. And we also need to amplify the
voices of those who aren’t given the opportunity to speak.
To purchase print or digital copy of the book, it is
available on Amazon.
Morgenlender,
Julie. (2020). The Things We Don’t Say: An Anthology of Chronic Illness
Truths
. Three Barrel Bluff.
* I received a free digital copy of this book from the
author. However, the review presented here is solely based on my personal
opinion of the book.


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