Learning you have an illness is difficult enough—but then you have to grapple with what to do with that information. Here, experts and those who have been through it share the crucial next steps—and some comfort, in the process.
It may start with a nagging symptom, a troubling scan, or a phone call. In an instant, your life seems to split into before and after. We all hope it will never happen to us, but odds are you or someone close to you will have to navigate this traumatic terrain at some point. Forty percent of Americans will be diagnosed with cancer in their lifetime; breast, lung, and colorectal are the three most prevalent types for women. Heart disease, multiple sclerosis, and other life-changing illnesses are also all too common.
“There’s initially a feeling of complete shock. It may last hours or days,” says Gary McClain, Ph.D., a psychotherapist in New York City and the author of After the Diagnosis: How Patients React and How to Help Them Cope. Although you may want to crawl under the covers and stay there, you need to take in complex medical information, help loved ones cope, and juggle the rest of life. Even in the midst of a crisis, the dog needs to be walked.
“Being sick can be a full-time job,” says Patty Ribera, a professional organizer, a former nurse, and the founder of Critical Organizing, which provides medical, financial, and estate organizational help. And it’s one that you’ve had no training for: What do you do first? Whom do you tell? Calm your mind, gather your support crew, and follow these early steps.
Give In to Your Feelings
Expect a roller coaster of emotions. McClain works with clients who have been diagnosed with HIV, lupus, diabetes, and other conditions, and he has seen the gamut of reactions: sadness, frustration, numbness, fear, anger, and, very often, “Why me?” Loved ones who feel helpless themselves may try to encourage your denial: “You’ll beat this! Cheer up!” But, says McClain, “it’s important to let yourself feel how you feel—including the not-so-comfortable emotions, like anger. Trying to hold in those feelings just adds to your stress.” (A licensed therapist can help you get used to letting it all out.) “You are grieving the loss of your health as you knew it, and that takes time,” says Anne Coscarelli, Ph.D., the director of the Simms/Mann UCLA Center for Integrative Oncology. “Doing so helps you shift gears and better adjust to the challenges you’ll face.”
Get the Key Facts
You’ve probably heard that patients who are well-informed about their condition have better outcomes. But does that mean you have to bone up on cell biology and the latest clinical trials? The prospect can be overwhelming, even terrifying. Don’t push yourself. It’s fine to take in information in small increments during those first days and weeks, says Vicki Kennedy, a social worker and a vice president at the Cancer Support Community, in Washington, D.C. Some good first questions to ask your doctor: What do I need to know right now? How much time do I have to decide and act? What is the immediate next step here? Also keep in mind the following ways to get up to speed fast.
Prepare Strategically for Your Appointments
In those first fraught meetings, stress can make it impossible to comprehend what the doctor is telling you. “Anxiety and distress interfere with your concentration and memory,” says Coscarelli. “You might retain less than half of the information that’s conveyed to you.” Write out a list of your most important questions beforehand. Another good idea is to bring along a second set of ears—or even two sets, if you believe that your partner is as overwhelmed as you. Repeat back crucial points to make sure that you have it straight (the exact name and stage of your condition, the drugs or therapies suggested). Many doctors will allow you to record meetings on a smartphone. That way, you can listen afterward at home, as often as you need, until everything sinks in.
Help the Doctor Get to Know You
For many diseases, treatment is no longer one-size-fits-all. Write down in advance the points that you want to convey to your doctor about who you are, what your priorities are, and what’s important to you in treatment, says Kennedy. Maybe you’re a single mom who works full-time and you’re concerned about how treatment will affect your ability to work. “Research shows that people who do this kind of preparation have a far more satisfying and productive meeting with the doctor,” says Kennedy. (A free program for cancer patients offers counselors who can walk you through these issues in person or on the phone. Search for “Open to Options” at cancersupportcommunity.com.)
Don’t Just Hurry Up and Do Something
Unless it’s an actual emergency, experts suggest that you take the time to get a second opinion. Yet remarkably few people do this. In a 2010 Gallup poll, 70 percent of respondents said that they would not feel the need to seek out a second opinion after a medical diagnosis. “Many patients worry that they will be abandoned by their doctors at a time when they feel most vulnerable,” says Coscarelli. A second opinion, however, is not meant as a vote of no confidence for doctor number one; it’s a way to gather more information so that you can be confident in your decision. Be direct with your physician: “I have to do my homework, so I’ll be consulting another expert, too.” Says Coscarelli, “If your doctor feels threatened, you may have the wrong doctor.”
Organize Your Records
Yes, there will be a lot of paperwork. Consider keeping all your medical information together and portable so you can take it to appointments, suggests Ribera. A low-tech accordion folder or a three-ring binder can work well. Include copies of insurance cards; a list of medications and doses, including vitamins and supplements; records of relevant history; and a list of the doctors you have seen. If you’re comfortable storing this sensitive information on your phone, apps like MyChart provide an electronic way to stash it all. Ask your doctor to hand you, e-mail, or mail copies of the day’s tests and doctor’s notes. “You are legally entitled to this information,” says Ribera. That’s empowering for some, TMI for others. (Pathology reports, for instance, can sound scary if you don’t know the jargon.)
Google With Caution
Pause a minute before heading to your favorite search engine, advises Steven Petrow, a 32-year cancer survivor and the former Medical Manners columnist for EverydayHealth.com. True, the Internet can be invaluable for research, but horror stories, juice-cleanse cures, and alarming statistics abound. “Doctors have limited time with you,” says Coscarelli. “If you bring in lots of misinformation they need to correct, that’s how they will have to spend it.” If research is your way to cope, visit sites run by major medical institutions and non-profits (look for .org, .gov, and .edu), or ask a savvy friend to sift through information for you. “Just remember that the doctor who is reading your pathology report or looking at your tests knows more about you than the Internet does,” says Coscarelli.
Explore Your Financial Resources
“The financial toxicity of a major illness can be dramatic,” says Kennedy. “Studies suggest that up to half of bankruptcies may be medically related.” This is not just because of high-dollar surgery or medications; gas, parking, co-pays, and missed work all add up. Early on, talk to a financial counselor or a social worker at your doctor’s office to discuss insurance and learn about assistance programs. Because of the astronomical cost of medical care, even if you’re financially stable, you may qualify for some programs, says Kennedy.