"Getting diagnosed with an illness is like hearing the starting pistol at the beginning of a race. Whether it's a sprint or a marathon, a grueling endurance run or a jog through the park, the race is yours alone. No one can run it for you."
Those are the beginning lines of my first book, AFTER ANY DIAGNOSIS: How to Take Action Against Your Illness Using the Best and Most Current Medical Information Available, and they ring as true to me today as they did in 1999 when I first wrote them. The book is my attempt to help people "run a better race." My goal in writing it was to help people find, understand, evaluate, and use medical information so they could become more active in their health care and better able to participate fully in making shared medical decisions.
I'm not a doctor, but my experiences have given me an up-close perspective of the issues that are important to patients. I was trained as a scientist, so I understand the processes of experimentation and the slow, inch-by-inch nature of medical advances. I received a master's degree from the University of Toronto, with a specialty in health psychology. I've been doing research, in laboratories or libraries, for more than 20 years, so I know how to find information quickly. For the past 5 years, I've been a freelance health writer, and I consider myself a patient advocate. Throughout this book, I strive to be objective in describing current medical practices, and empathetic to the needs of people who find themselves in the most frightening and sometimes grueling times of their lives.
Because of the nature of my work, I get calls from friends and relatives all the time asking what I can tell them about a particular disease they've just had diagnosed. I've had to inform and counsel my own family through my sister's recovery from a brain tumor, and translate complex medical records for my father-in-law, who recently succumbed to colon cancer. I felt privileged to help, and honored that they trusted me enough to ask me to help find information about some very personal problems. That's when I began thinking about writing the book, to offer people without a health researcher in the family a chance to gain access to the same medical information I had. The idea finally gelled after an interview I had with an oncologist at Johns Hopkins University. I asked him what was the first thing he told his newly diagnosed patients. Without hesitation, he said that the most important thing was to go out and gather as much information about their specific disease as possible. Then he paused, sighed, and said, "Unfortunately, nobody knows how to do that."
That's where this book comes in. As a health writer and researcher, I need to locate and digest information on a wide variety of medical topics quickly. The information has to be current and accurate, otherwise I'm out of a job. The stakes are even higher for those of you dealing with a serious illness. The goal of this book is to guide you through the process of becoming a more active patient and, it is hoped, a healthier person with a better quality of life.
Who are active patients?
They are people who are involved in understanding their disease, have a good partnership with a physician they trust, make monitoring their symptoms and managing their care a routine, and participate in making shared medical decisions. It isn't always easy, but the results are well worth the effort. Research conducted over the past 25 years has shown that patients who are active in their health care are physically and emotionally better off than more passive patients. Patients who participate have a better understanding of their illness, cope with their disease better, are less anxious before medical procedures, are hospitalized less frequently, and claim to have a better quality of life. Informed patients also tend to get better faster and maintain better health, perhaps because they seek out the best care. Some studies have shown that active patients with cancer experience fewer chemotherapy symptoms, are less depressed, and report lower levels of pain compared with more passive patients.
As frightening as it might be for patients to approach their doctor, most physicians are thrilled when their patients express an interest in becoming more active. Recently, I heard from a woman who had read this book after being diagnosed with breast cancer. Because she was too nervous to approach her doctor directly, she wrote him a letter explaining what she wanted, and would he mind if she considered him her health care partner. At her next office visit, he was enthusiastic about her plan, and their style of communicating immediately changed from passively exchanging information to having an active dialog.
Physicians have a reason for being enthusiastic. An informed patient allows doctors to focus on specific issues and treatment, instead of spending time explaining disease basics. In addition, patients are being called on to make decisions about their medical treatments—choices that can seem frightening in terms of their risks or side effects. Informed and active patients, working in close partnership with their doctors, learn to make the best decisions for themselves. When doctors and patients share in making medical decisions, they take into account not only the medical pros and cons, but also the patients' life priorities, experiences, desires, and hopes for the future.
The basics of becoming an active patient are simple, but putting them into action can be difficult. I've spoken with physicians who teach patients how to become more active who say that they themselves sometimes have difficulty putting plans into action. It is hard to break old habits, but the changes are worth it. Here are a few action items to guide you in the process of becoming an active patient:
- Seek out and understand information about your disease and treatment. Read as much as you can, ask questions, join support group...anything.
- Establish partnerships with your doctors. Some doctors do this routinely; others need to be asked. Make it clear that you don't want to "take over" for the doctor, but to participate in decisions and care issues.
- Be entirely open with your doctors...even about the embarrassing things, and even if you think it makes you look bad (such as not taking medication). There are solutions to many problems, but doctors are not mind-readers and cannot help if they don't know what's wrong.
- Don't leave the office without understanding what your doctor said. If the doctor is using words you don't understand, ask him or her to say it in a different way. If you run out of time, ask if a nurse or other professional could explain things more clearly. You shouldn't need a translator to decode medical buzzwords when you visit a doctor.
- Bring a friend to help you ask questions if you are nervous or shy.
- Prepare for office visits by bringing records of anything that has happened since your last visit, including symptoms, medication side effects, and the results of tests or medications prescribed by other doctors. If you have questions, write them down in advance so you don't forget.
Those are the basics, but you can become as involved as you want to be. AFTER ANY DIAGNOSIS can guide you through the process. I've heard doctors and patients say that in health matters, peace of mind comes knowing that you've done everything possible to take control of your health. That's the best any of us can do.
View Carol's Slide Show "Gathering Information After a Diagnosis."