Reviews

In The Things We Don’t Say, Morgenlender opens the door to the intimate lives and thoughts of those with chronic illness through first-hand accounts of their lived experience.  The large group of international authors she has assembled do not hold anything back – sharing intimate, honest and at times raw, details of how illness has affected every aspect of their lives from friendships to their ability to work to their families and even to their sex lives. Readers will feel their shame for being sick and disabled, their loneliness at having to withdraw from activities designed for healthy people and their terror at confronting the loss of their autonomy and independence.

For those of us living with chronic illness, Morgenlender has given us a gift of belonging and connection to a universe of others who share our experience. Her authors remind us that we are not alone, that our pain and illness is real and that it is more than okay to take care of ourselves first, as hard as that is to do.

For readers who are not sick but are drawn to this book for whatever reason, The Things We Don’t Say will surely deepen their understanding of the inner world of those burdened by chronic illness.

Cindy Steinberg

National Director of Policy & Advocacy, U.S. Pain Foundation

In Julie Morgenlender’s impressive anthology, The Things We Don’t Say, the reader gets an illuminating and sobering view of what life is like living with debilitating pain. Julie found such an amazing, diverse and articulate group of writers (including herself) to give chronic illness the voice it deserves. I was truly touched as I became absorbed and emotionally invested in each story and felt my outlook and perspective on chronic illness change.

At times gut-wretching, always fascinating, and sometimes humorous, The Things We Don’t Say should be read by everyone as it paints an intimate portrait of pain, helping the reader understand how chronic illness looks and feels firsthand. It also helps to give those who are suffering a voice and empower them to see that they are not alone in the world. This book offers the reader a better understanding of how to support and sympathize with those who struggle on a daily basis with chronic illness. I have no doubt that Julie Morgenlender’s anthology, The Things We Don’t Say, will help us get closer to this goal.

Michael Frolichstein

Filmmaker/Podcaster, Founder of The Celiac Project

In Julie Morgenlender’s new anthology, we meet a variety of folks living with different chronic illnesses. Reading about their individual challenges and strengths is affirming to those of us who are also sick; in their experiences, we spot many ways in which we can care for ourselves.

Keidra Chaney, in I Am Not My Cornea, tells us she won’t stop talking about her progressive vision loss even if it’s uncomfortable for others, and that feels so relatable; I don’t know what Keidra’s symptoms are like personally, but I know how powerful it is when folks speak up. And Lindsey M. Clouser, in High-Maintenance, reminds us that women are raised to be people-pleasing comforters to all, even at the cost of our self-care. But she refuses to pretend to be low-maintenance, and I love her frankness.

If you live with chronic illness or know someone who does, get this book! You will see yourself in these stories, and gain new insights and strategies for living well in spite of illness.

Jenni Grover

Creative Resilience Guide and author of ChronicBabe 101: How to Craft an Incredible Life Beyond Illness, jennigrover.com

The anthology is fantastic! So many heart wrenching and heartwarming stories! I cried and cried, identifying with almost every author. I’ll certainly purchase copies for doctors!

The stories in Morgenlender’s Things We Don’t Say are heart wrenching, heartbreaking, and heartwarming. They’re real stories of real struggles by real people. People with invisible illnesses often have to fight for a diagnosis, live years with symptoms that don’t make sense, get passed from doctor to doctor like they are on an assembly line. They are sorely misunderstood and often dismissed by everyone in their world.

But there’s more to this anthology than horrible unheard-of diseases that most people can’t pronounce. There are beautiful stories of acceptance, of growing stronger because of limitations, of having unbelievable resilience in the face of catastrophe, of friends, partners, spouses, parents and doctors with compassion. There are stories of hope and thanksgiving. You’ll cry and cry but in the end you’ll understand and that’s all a person with an invisible illness wants you to do.

Shelia Bolt Rudesill

The Things We Don’t Say is a collection of triumphs, hardships, lessons learned, and day-to-day experiences, all bound together by the theme of chronic illness. I learned many new things about chronic illnesses through different lenses and, with the topics I felt a connection to, gained a greater sense of community and understanding. After reading, I came out with a renewed sense that I was not alone and that chronic illnesses are worth the fight, with many around the world also joined in fighting.

I loved the accuracy and honesty with which chronic illness was described, and this book is a fantastic way for those not directly affected by chronic illness to gain a better understanding of day-to-day struggles and small triumphs. This book is one that I wish every doctor, family member, and friend of those dealing with chronic illness were required to read. Whether directly or indirectly affected by chronic illness, readers of all types have the valuable opportunity to learn and benefit from this book.

Maya Evohr

As a chronic pain warrior myself, I really enjoyed reading this book. Once I started, I struggled to put it down.

This is exactly the the book I would have liked to have had access to 8 years ago when I was first going through the beginning of my chronic pain journey. It is something I would have not read just once, but kept going back to, as I continued to go through the roller coaster that is living with chronic pain. However, 8 years in, I had so many ‘yep’ and head nod moments as I completely understood where the writer was coming from. This book definitely helps the reader feel not so alone in the crazy chronic pain-filled life.

I can also see it as being an amazing resource to share with loved ones who want to understand but are struggling. It’s not their fault. It is certainly a ‘you can’t know until you know’ kind of thing, but this would be the next best thing: to read many stories about many different chronic illnesses, how they affect individual people’s lives and how to help. There are some great tips-based stories for loved ones. The stories also shed light from a variety of people’s perspectives and have the potential to help both chronic pain warriors and their loved ones. A brilliant and useful book!

Michelle Finlay

Morgenlender’s anthology, The Things We Don’t Say: An Anthology of Chronic Illness Truths, gives unheard individuals with chronic illnesses the chance to speak up for themselves. This is a very personal book which makes one feel as if one were meeting these varied individuals and hearing their life stories firsthand. The truths are complex, painful, at times terrifying, but most of all they are imbued with hope.

I wanted to root for each author and tell them that they are heroes and sheroes. Some of these chronic illnesses may appear invisible but as author Jessica Ward writes, “hope is visible.” This book educates, sensitizes, supports and connects us all. It’s for people silently suffering with these illnesses and for those who know and love people who have them. It’s also a reminder to all of us to not judge our neighbors.

Maura Albert

I was blown away by this book! It has so many amazing stories that really show the full spectrum of emotions of living with a chronic condition. I think this anthology will help bring to light many aspects of chronic illness that are often left unspoken.

This anthology demonstrates why I feel at home within the chronic illness community: it reveals the truths of living with a chronic condition with a kind of rawness that also consoles. It shows that it’s okay to not always be optimistic, and that expressing feelings of grief, loneliness, guilt, and fear can—in and of itself—be empowering. Pick up this book if you need a healthy cry, a reminder that you’re not alone, or stories that encourage and embolden.

Jenna Ziegler

I’ve got to say it is a riveting, spectacular, and insightful glimpse into the lives of people with chronic illnesses. It is so helpful for outsiders looking in to have a much more complete understanding of what people go through who suffer on a daily basis. This book captured that perfectly. I love that these were people from all over the globe, different genders, and encompassed varied illnesses. It’s varied enough that everyone can get something out of it.

I feel that this book will help many people, in fact all people. It’s good to feel that others understand what you’re going through, and at the same time it’s so helpful for outsiders looking in to have a much more complete understanding of what people go through who suffer on a daily basis. You captured that perfectly. It’s definitely going to change many people and how they view the world.

Editor’s note: This is my mother. We both freely admit that she’s totally biased. It is still her unsolicited opinion.

Barbara Morgenlender

This book is a gift that it being put into the world.

Here are the voices we have been waiting to hear – authentic voices honed by years of experience with chronic illness. They come from all over the world, from Boston to Australia and countries in between; they come from all walks of life; from many genders, LBTQ+ and straight; from a variety of ethnic backgrounds; even from owners of assorted pets – from dogs and cats to chickens and goldfish.

Each contributor has coped for years, some for many years, with the challenges of their illness – often, in fact, multiple illnesses – some rarely heard of, some misunderstood, all challenging even when in temporary remission.
Their voices have been gathered into a beautifully-edited volume with a meticulous index, and a comprehensive glossary. Their words will touch you. Their truths will make a difference to fellow chronic illness travelers, to personal and professional supporters, and to anyone in need of inspiration and encouragement. We thank them. We will listen. I will listen.

Jane Lesley

“Pain is not a shared experience.” This was quoted by one of the writers in the book. People who experience chronic pain should definitely read this book, because I sure enough have learned a lot about dealing with my own chronic neck and back pain. I also understand that I’m not completely alone in my isolation. Reading this anthology, I was quite surprised by how truthful and informative this book was to me. I’ve been suffering from chronic pain for over 20 years of my life, and yes, to paraphrase another writer in the book, you do forget what it’s like to not feel pain. This was a major realization for me, and it was just one of the things that I realized after reading this book.

I highly recommend people who have chronic illnesses and especially their family members or friends to also read this anthology. I gained so much knowledge and also understanding that it isn’t just me that is going through this. I want my family to read this because they don’t have an understanding of how badly I feel; not just physically, but mentally as well.

Maria Vita

This book lays bare the lives of people with often invisible chronic illnesses. Told from the perspective of dozens of people living with pain and disability, it shares their real world, coping with often shoddy medical care, disbelieving friends and family, depression, financial stress and more. It’s not a Hallmark, “isn’t it inspirational how they coped and overcame” story, but neither is it “poor me, look at all I have to suffer.” The stories are matter of fact, from the heart and filled with useful information. There is often humor as well as grief. It’s a book not only for those who have to navigate the world of chronic illness, but for their friends and family and anyone who ever wonders, “What do I say, how do I help?”

Jeanne Nelson