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.
If you want more information on the book visit Chronic Illness Truths.
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.