Books and Resources That Have Helped Me On My Journey

by Jennifer Crystal

The holiday season is upon us, and you may be wondering what to get the Lyme patient in your life. Or maybe you’re a Lyme patient who is searching for books or films to guide you on your journey. To help, I’ve compiled a list of resources that have been particularly helpful to me.

Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties

By Laurie Edwards—This book has been a bible to me. I first came across it by accident. I was checking a movie out of my local library and was handed someone else’s call slip by mistake. This book was listed on that call slip. It breaks down every aspect of being sidetracked by illness at the pinnacle of a young person’s life—from working to dating and everything in between—all in short, accessible chapters. You can pick and choose which chapters to read, or go straight through the book. A decade after finding this book, I still refer to it. It’s especially great for patients.

In the Kingdom of the Sick: A Social History of Chronic Illness in America

Also by Laurie Edwards—Chocked with research, this book is more academic than personal, but reaffirms the difficulties patients with chronic illness have with getting diagnosed and validated, while exploring the root of those issues. Lyme disease (my story in particular) gets a shout-out in Chapter 7. This book is good for patients who are further along in their recovery journey (and are able to read and process a more complex book) and is good for caregivers, friends, and family, too, it they are to truly understand what a patient goes through.

Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease

By Richard I. Horowitz, M.D.—Whenever people ask me for my specific protocol, which I can’t give out (see question 3), I point them to this book, because it gives very specific medical advice on diagnosing and treating tick-borne diseases (also check out the sequel How Can I Get Better? Treating Resistant Lyme & Chronic Disease). This is a great resource for patients—and for families trying to understand tick-borne illness—but it’s especially good for doctors, too. If my doctor weren’t Lyme literate, I would slip this (very large) book in his stocking, no question.

Coping with Lyme Disease: A Practical Guide to Dealing With Diagnosis and Treatment

By Denise Lang and Kenneth Liegner, M.D.—This was one of the first practical books I read about Lyme, and it provided reassurance and guidance. I particularly appreciated the chapter “I’m Not Crazy, I Have Lyme!” My mom read this book during my relapse, and it gave her a broader, more detailed understanding of tick-borne illness. I recommend it for both patients and caregivers.

Brain on Fire: My Month of Madness

By Susannah Cahalan—Though Cahalan was ultimately dealing with a different neurological disease, as a Lyme patient with cognitive issues, I related fully to her journey. Like so many Lyme patients, she was told her symptoms were “all in her head,” and she was almost admitted to a psychiatric hospital before being accurately diagnosed with anti-NMDA receptor encephalitis. I highlighted so many lines of this book, writing in the margins, “Yes! Me too!” It’s also a thrilling, well-researched read, the structure of which served as inspiration for my own forthcoming memoir. It’s perfect for those who are further along in their journey and can read a  more complex book. It’s also good for anyone trying to understand how frustrating it is for patients who are suffering from mysterious symptoms

Traveling Mercies: Some Thoughts on Faith 

By Anne Lamott—This book gave me hope and much-needed comic relief in my darkest days. Lamott’s writing—and her view on life—are touching and accessible. I love all of her books, but this one in particular made me feel like I was not alone. It’s great for anyone wrestling with illness-related despair.

Body Wisdom: Light Touch For Optimal Health 

By Sharon Giammatteo, Ph.D.—When asked what adjunct therapies helped me most, I often talk about Integrative Manual Therapy, which involves cranial sacral therapy and neurofascial processing. To be clear, this therapy has worked in conjunction with my medications and supplements, not in lieu of them. This book is written by the founder of Integrative Manual Therapy and provides some simple techniques that patients can do at home. Caregivers can help, too!

The Heartmath Solution

By Doc Childre and Howard Martin with Donna Beech—This book is accompanied by a workbook that I used with a therapist while I was in the throes of tick-borne disease. It helped me to learn what outside stressors were affecting my ability to manage my illnesses, and taught me some cognitive behavioral therapy skills. It’s a great resource for patients who are open to this type of holistic therapy, but make sure the patient is open to the project conceptually before buying this or Body Wisdom for them—that way you won’t be handing them unsolicited advice.

Lyme: the First Epidemic of Climate Change

By Mary Beth Pfeiffer–Though this book wasn’t yet out at the time I was really sick, I’m grateful that it now is. Blending research with heart-wrenching story-telling, this book lays out how climate change has impacted the rise of tick-borne diseases, and shows the devastating affects those diseases are having on a broad cross-section of society. This is an important read for everyone, especially if you know someone with Lyme and want to understand what led to their illness.

The Wish List  

By Barbara Ann Kipfer—This is a fun stocking stuffer for the whole family. In my post The Value of Visualization I talked about making lists of things I hoped to be able to do when I recovered. I got many of the ideas from this book, which is simply a list of almost 6,000 such ideas ranging from “milk a cow” to “deliver newspapers on rollerskates” and “play with the Chicago Bulls.” Some are achievable whether you are sick or healthy; some you’ve probably already done (it’ll make you feel good to be able to check them off!), and some will merely give you a laugh. There are spaces to add in your own ideas, too. As the years have passed and I’ve gotten healthier, it’s been especially fun to go through and add more check marks. This is a great gift for patients who are in need of hope, and those who are having trouble with long-form reading like an extended magazine article or novel.

Under Our Skin (documentary film)

The first time I saw this movie, I had to leave the theater because it hit too close to home. The people in this documentary were going through exactly the same thing I was, and that was hard to watch. The second time I saw the film was years later, when I was well into remission, and I was able to see how well it told the story of Lyme disease—its history, politics, and affect on hundreds of thousands of people. The film might be too much for a patient who is in the midst of treatment, but it’s a must-see for family and friends, or really anyone who wants to learn about tick-borne illnesses.

Cool Runnings (movie)

This movie about an Olympic Jamaican bobsled team is laugh-out-loud funny, and inspiring. I watched it when I was younger and rediscovered it when I was sick. It gave me exactly the light-hearted escape I needed and also reminded me that anything is possible.

For even more ideas, check out the Global Lyme Alliance Lyme Library.

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir about her journey with chronic tick-borne illness, for which she is seeking representation. Contact her at: 

lymewarriorjennifercrystal@gmail.com.