Medically Reviewed by Jacque Parker, RN
After six years of living with Crohn’s Disease, and a year and a half thinking about how the disease has affected my body, mind, and spirit, I wrote a book-length manuscript–currently in the final revisions stage–about living through a year of active disease. I called the book Learning Sickness, which refers to the idea that chronic disease has taught me a great deal about the most important questions we can ask about what it means to be a human being. While I learned what it means to be sick, I also learned about God, about being a father, about doctors and medicine, and about all of the little strategies we have to use to cope with chronic illness in our daily lives.
At the end of the book, I tried to summarize the most important lessons I learned in five Cardinal Rules for Life with Crohn’s Disease. I offer these especially to the newly-diagnosed. These are the things I wish someone had told me when I was first diagnosed. It was a hard five years learning these lessons; I hope I can help others learn them less painfully.
1. Accept The Presence Of The Disease In Your Life
Do not expect either God, or modern medicine, or any other substitute for these entities, to cure you. Hope for a cure, pray for a cure, raise funds for a cure, campaign for public awareness for a cure-but do not put your life on hold waiting for one. Learn what accommodations you have to make to the disease in your life; make those accommodations; get on with your life.
2. Act Quickly
Learn the patterns of your disease, and become familiar with the signals that indicate an oncoming flare. When you can see those symptoms appearing, call your doctor immediately. Intervene as early as possible in order to prevent flares from spiraling out of control.
3. Become Your Own Patient Advocate
Not only can doctors not cure this disease; they cannot even yet tell us what causes it. Visit three different doctors and you might receive three different recommendations for treatment. Do not let doctors–or nurses, or dieticians, or your friends or families– make your medical decisions for you. Buy every book you can find, read as much scientific jargon as you can tolerate, and educate yourself about the human body and this disease. Take control of your medical care.
4. Learn When To Live And When To Rest
We are both blessed and cursed with a disease that comes and goes, and can spin us from remission into the hospital and back into remission again in the course of a few months. When you are healthy, live intensely. Gather sensation and experience as greedily as you can. When you are sick, rest and attend to your body. Although you may lose sight of this when you are in the middle of months of years of illness, a time will come again when you are healthy.
5. Tell Your Story
Tell it for yourself, first. We make sense our lives through the stories we tell about ourselves. Telling the story of your disease–on paper, on the internet, to a friend–will help you see the disease’s place in your life more clearly. Tell it for your friends and families, second. They need–and in most cases want–to understand what you are going through. Tell it, finally, for the rest of the world. Research funding and increasingly sophisticated medical care will increase with greater public awareness of the disease.
Every experience with chronic disease is different. Everyone will have their own set of Cardinal Rules.
Perhaps the best advice I can give is to take my Rules as inspiration to draw up your own Cardinal Rules. Drawing up Rules means that you are learning from your experience. And while we hope– but don’t wait–for a cure for this disease, we can take comfort from the wisdom that disease may grant to us.
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James Lang, Ph.D. is the author of Learning Sickness: A Year with Crohn’s Disease. He is an Assistant Professor of English Literature at Assumption College in Worcester, MA. He regularly writes both adult nonfiction and children’s literature.
