Tessa Miller - What Doesnt Kill You: A Life with Chronic Illness - Lessons from a Body in Revolt

This is a book of nonfiction. Its part memoir, detailing the story of my illnessCrohns diseaseand all its spindly legs, how it stretches forward and back through the timeline of my years, and how it shook up my body and my brain in ways I wasnt ready for. Ive written the autobiographical part of this book through memories, journals, old social media posts, medical records, and interviews with my family and my doctors. Parts of this book have appeared in various forms in the New York Times, the Daily Beast, Medium, and Self. My writing here deals with details of bowel disease, as well as hospitalization, sexual assault, and physical and emotional abuse. Certain names and identifying details have been changed or omitted.

This book is also part guide for fellow chronically ill peoplemeaning those with incurable conditionsand their loved ones, sharing the lessons Ive learned from my diagnosis through today. This is the book I wish someone had given me, as well as the book I wish someone had given my family and friends, when I got sick. I didnt need conflicting texts about what I should or shouldnt eat or dry clinical reports or self-help books written by able-bodied authors offering little more than reduce stress. I needed a book written by someone who exists in that foggy space between the common cold and terminal cancer, where illness doesnt go away but wont kill you. I needed someone who lives every single day with illness to tell me that 1) I wasnt alone and 2) my life was going to change in unexpected, difficult, and surprisingly beautiful ways.

This isnt a book about what causes chronic illness or what might cure it. I do not speculate about treatment for others, I only describe my own. With help from people far smarter than I am, I tell readers both what I wish I knew before I got sick forever and what I know now, a decade later: how to find doctors who wont dismiss your symptoms, how to navigate changing relationships and careers, how to grieve a self that doesnt exist anymore, why mental health care is so important, and how joy is possible despite (and because of) it all. If youre interested in my personal story, thats generally at the beginning of each chapter, followed by the more service journalismbased writing. But the book also has appendices and an index, so you can search for particular topics that matter to you. Choose your own adventure.

I picked the mental health experts interviewed in this book for their areas of specialization as well as their varied approaches; youll notice that almost all have backgrounds in health psychology or concentrate in the overlap of chronic illness and mental health. Some practice cognitive behavioral therapy while others focus on psychoanalysis; some are nondiagnostic while others work within diagnostic parameters; some work with individuals while others specialize in couples or families. I thank them deeply for offering their time and expertise on the phone and through email, and I thank my mom for her hours transcribing these interviews.

For me, chronic illness and its psychological, social, and economic aftershocks brought with it an intense need to be understood. I imagine anyone who writes a memoir has that need as well. I hope that if youre chronically ill and you read this book, you will feel seen. If youve dealt with trauma of mind, body, or both, I hope you will read this book and feel less alone. And if youre not chronically ill or if you love someone who is, I hope you will read this book and understand all of us better.

A quick note on the language in this book: Chronically ill technically means any illness lasting longer than three months, but the discussion in this book means illness that does not go awayit can be managed but not cured. Chronic illness does not usually cause death (though complications of chronic illness can and do kill). Terminal illness, on the other hand, cannot be cured and ends in death. Some illnesses, like HIV, that were once terminal are now considered chronic because good treatment exists. Disability includes any mental, physical, intellectual, or sensory impairment. Sometimes, chronic illness and disability overlap; sometimes, chronic illness leads to disability and vice versa. Some people identify as chronically ill but not disabled, disabled but not chronically ill, or chronically ill and disabled. Able-bodied means not disabled. (Some people also use non-disabled.) I use chronically ill people and disabled people rather than people with chronic illness or people with disabilities because this is the language my community prefers.