Dr. Gary R. Epler is a lung consultant at Brigham & Women’s Hospital and the Dana-Farber Cancer Institute. He has also just published his first book for the lay public, titled “You’re The Boss: Manage Your Disease,” and subtitled “Five steps to take charge of your health.” In it, he shares lessons that initially derived from his work with patients who have a rare lung disease he discovered in 1985 — but that apply to a far broader swath of the medical public. Just about all of us, in fact.
The book brims with instructive tales of over-aggressive patients and doctors, but I found its overarching tone to be an encouraging, “Don’t worry, you can do it!” Here, lightly paraphrased, he describes the five steps and beyond.
Q: I really enjoyed your book, especially its use of Socratic dialogues to make for totally painless teaching. But the general impression I came away with is that as patients or potential patients, our main goal needs to be to keep ourselves out of the clutches of the medical system as much as possible. As a doctor who works in that system, is that indeed your message?
A: It is my message. I was thinking about the most important thing I could say today, and it is that people need to have a positive approach to their disease. They need to say, ‘I can manage this disease.’ Not, ‘Why did it happen to me?’ and look for blame, but ‘I can manage this disease,’ and as a result, people will learn how to manage their diseases with the least amount of ending up in hospitals. They’re dangerous places. They’re fantastic places if you need them but they’re really quite dangerous if you don’t. And learning about your disease, learning these five steps, will help you keep that to a minimum. Sometimes it may be needed, of course, but it will be kept to a minimum.
Q: So what are your five steps??
Step One: Learn all you can.
The first step is to learn everything you can about what you’re facing, about your disease. Talk to the doctor, talk to the nurses, but also go on the Internet. There’s amazing information on the Internet about diseases that affect one in a million, and not only that, but you can talk to people with the same issues and problems, and learn things. People worry that there’s some really bad information on the Internet, and that is correct, but trust yourself. You will find what you need to manage your health.
Step Two: Understand the diagnostic process.
This means that doctors are going to be be asking you questions and examining you, and then they’re going to be telling you about tests. Be sure to ask your questions: What is this test going to show? Is it going to help me in my situation? Is there only a 1% chance it will answer the question? What are the risks? Some of these procedures are quite hazardous, and if the benefit is worth it, they’re okay, but if there’s no benefit, all risk, it’s just not worth the test.
A story about a friend of mine: He was having some morning vomiting in January. He went to the doctor, who took some X-rays and found nothing. They did blood tests — normal. They did an endocoscopy test, looking into the stomach — normal. The vomiting continued, but everything else was fine. The doctor said he wanted to do a colonoscopy. Why? My friend asked. The doctor said, ‘We need to be thorough.” My friend said, ‘That’s not a very good reason,’ but they went ahead and it was normal. Then the doctor said, ‘We need to open up your belly and look inside.’ My friend said, ‘Why would you do that?’ The doctor said, ‘To be thorough.’ My friend said, ‘Look. We had an abdominal CT scan, there were no masses, no cancer.’ His weight was fine, his appetite was good, everything was perfect, he was just vomiting in the morning. And he said, ‘I don’t think so. This procedure is a fishing trip. There’s risk associated with it.’
By the way, he had felt like he wasn’t getting enough sleep in January, so he had gone to a health food store and picked up a natural sleep aid, melatonin. He’d been taking two tablets every day. He went to the Internet and the first sentence he saw was ‘May cause gastric distress and vomiting in some people.’ He stopped taking it, the vomiting went away, and that was the end of it. But look at the diagnostic process he went through! That’s why you need to know about the diagnostic process.
Step Three: Know the treatment options.
There are always options. One thing to find out is, what’s the natural history of the disease? What happens if you don’t do anything? Sometimes they go away in days, weeks or months. That gives you options. The other important thing is that it depends on who you’re talking to. If you’re talking to an internist, you’ll be talking about pills. If you’re talking to a surgeon, you’ll be talking about surgery. You have to keep in mind: what are the benefits and what are the risks, and they need to really give them to you.
And the third question is: What are the alternatives? With all this information, you’ll come up with the best solution for you, because everyone is a little different.
Step Four: Monitor the process.
This is just what it sounds like. You ask yourself three questions: Am I better? If so, stay the course. Am I the same? I always give it another 48 hours — give it time, whether 48 hours, one day or one week. If you’re the same, what this does is it may prevent you from going into a hospital setting, getting a test that may run you down the wrong direction toward more tests. Try to avoid this situation, and monitoring works. The third thing to ask yourself is, is it worse? And if it is, then you may have to go to the doctor or the ER. But it turns out that doesn’t happen as much as people would think.
Step Five: Use the power of the mind and the traditional physical components.
As we already discussed, you have to approach the disease in a positive way and say, ‘Yes, I can manage it!’ The disease is part of you. If you fight it, you’re going to be in deep trouble. If you remember the story of Joe — [a lower-back-pain patient in the book who ends up depressed, unemployed and addicted because he’s wrong-headed about treatment]– he really made a mess out of his life. And unfortunately those little stories are all over the world. He didn’t learn anything, he didn’t pay attention, he didn’t learn about risks, he just forged ahead, all he thought about was fighting, fighting, fighting. But the disease is part of you — it’s not a good part, but it is part of you and you can manage it.
Q: I assume there are some disease we should fight, though, as you mention in the book? Pneumonia?
A: The main difference is acute vs. chronic. The acute illnesses you can go ahead and zap — infectious things like urinary tract infections or bronchitis or pneumonia, or skin lesions you can cut off. But when it comes to cancer, when it comes to chronic diseases such as diabetes, asthma and lower back pain, that’s when you learn to manage them. You may not be able to cure them, make them completely go away, but you can manage them, and that’s good enough because it allows you to live a life. That’s the key. You can’t let the disease destroy you and just stay in bed all day and dwindle away.
And the second half of Step Five: visualization, compassion and controlled breathing. These three things are soft, gentle sciences, as they say, but they’re phenomenal and they really do work over time.
And the last elements in creating an environment to heal are very old fashioned things: One is exercise, two is nutrition, three is sleep. Those three things are so fantastic if you do it right. You have to manage them.
Q: Just an afterthought: You don’t focus on costs in the book, but I’d imagine that if everyone followed your advice, it would save the health care system a whole lot of money?
A: Yes, it will save the medical system a whole bunch of money. I have not concentrated on the issue and have not calculated it, but I do say in the book:
“The continuing debate over health-care regulation has reduced coverage of practical advice to give to patients suddenly confronting a new disease. The book provides five simple but practical steps that advise patients how to develop a positive attitude and manage disease, any disease, no matter the current state of health-care regulation.”