Experts divulge their most valuable tips

health

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 fulltime job,” says Patty Ribera, a professional organizer, a former nurse, and the founder of Critical Organizing, which provides medical, financial, and estateorganizational 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.

GIVEIN 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-socomfortable 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.”

GETTHE 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-sizefits-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

health 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 cancersupport community.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 nonprofits (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.

BREAK THENEWS TO OTHERS

Sharing your illness with friends, family, and acquaintances can be as difficult as getting the news yourself in the first place. “Make sure that you have a correct diagnosis before you tell people,” cautions Petrow, who experienced misdiagnosis himself. “Then take a deep breath, because telling other people makes it real.” Tell your nearest and dearest faceto-face. In person or by video call is best, says Petrow. It might help to practice a short script beforehand and ease in with a preface: “There’s something going on in my life that I need to talk to you about.” Even with this planning, “you might end

up saying, ‘Hi, I have cancer’ and bursting into tears,” says Petrow. “No judgment. We’re all human, and you haven’t done this before.” If you’re too upset, ask a spouse or a sibling to share the news with those who need to know immediately, then follow up personally when you are ready. “If you want others to keep the news confidential, be sure to spell that out clearly,” says Petrow. That way, you won’t be outed with a heartfelt Facebook comment. Talk with your kids, now. “It’s a normal and natural reaction for a parent to want to shield a child,” says Meredith Cooper, the executive director at Wonders & Worries, an organization that provides support to children whose parents are facing chronic or serious illnesses. “But to establish trust, you want to provide honest information at the child’s level.” Cooper suggests sharing the news with your kids as soon as you know. “Kids as young as two will have picked up on a shift in the house—closed doors, the phone ringing, parents’ nonverbal expressions,” she says. If you don’t address this, kids may think they’ve done something wrong. Use the correct name of the illness, tell them in simple terms what the treatment plan is, and—crucially—explain how they will be taken care of through these changes. (“Nana will bring you to school and soccer practice.”) Plan to revisit the topic often, so kids know it is safe to discuss. (“I’m going to the doctor tomorrow. Are there any questions you’d like me to ask?”) Use your judgment with friends and acquaintances. Neighbors, bookclub members, the nice mom from your kid’s class: Does everyone deserve the lowdown? “In our TMI culture, there’s a rush to disclose everything,” says Petrow. “But you don’t have to.” If you do want to share, steel yourself for some not-alwaysconsoling reactions. You may have to comfort them. Or they might blurt out, “My neighbor had that, and she died/went to Mexico to see this fantastic herbalist!” Have a go-to response ready, says McClain: “I’ll keep that in mind.” Or, more bluntly, “I’m a little overwhelmed right now, but I’ll let you know if I need more information.” Alert your employer— with caution. Evenif you consider your coworkers a second family, proceed carefully. Under the Americans With Disabilities Act, you should be accommodated.Anunethical employer, however, might fire you for a trumped-up reason once you disclose your condition. Petrow suggests sussing out how coworkers’ illnesses have been handled in the past. Were the bosses understanding about absences? Were coworkers supportive of the extra load they had to carry? If you see red flags, you may want to consult a lawyer before proceeding (better safe than sorry). Even if the environment seems supportive, it might be smart to wait until you have a treatment plan in place so you can give your employer concrete details. And be sure to tell your boss first (or HR if your company has a formal policy in place). “You don’t want your coworkers to be the ones that deliver your news,” says Petrow. Post to social media when (and if) you’re ready. Doing a Facebook reveal can produce an outpouring of support from everyone you know. But while “posting can be an act of real bravery,” says Petrow, once the news is up, it can be seen and shared— not just with your cheering section but also with everyone from future employers to college admissions offices. Once you do let everyone know, many will crave updates on your condition. Ribera recommends Caring Bridge.org, a website that lets you or a loved one post news as needed: “That way, you don’t have to get home from the doctor exhausted and think, I have to call Uncle Joe and cousin Billy.” (Similar sites include CarePages.com and PostHope.org.)

GATHER SUPPORT

In times of stress, men often react with fight or flight and “women react with ‘tend and befriend,’ ” says Coscarelli. “They think, Who can I talk to? Who can I gather near who’ll be supportive of me?” Assemble your posse. Enlist an advocate. “You need an ally you can lean on,” says Ribera. “It can be a family member, a friend, or a neighbor— and ideally someone familiar with medical

terms.” A 2008 Johns Hopkins study found that patients who brought a support person to appointments felt more satisfied with the medical care that they received. Your advocate can accompany you to treatments, lend an ear, ask questions, and speak up for you when you’re feeling overwhelmed. Consider a support group. Even within a loving circle of family and friends, you can still feel as if no one understands exactly what you’re going through, says Kennedy. Consider an online group at first: “There, you’re anonymous, and you can disclose as little or as much as you want,” says McClain. Once you feel comfortable, ask your doctor or local hospital about in-person support groups in your area. They can be a lifeline to people coping with illnesses of all kinds and stages. Ask friends to pick up dry cleaning. You’ll hear this a lot: “Let me know if you need anything.” Practice your detailed reply: “Thank you so much! Is there any chance you could mow my lawn?” You won’t have time for everything. Make a list of all the tasks that you don’t find as meaningful (drugstore runs, returning library books) so you can use your energy reserves for what’s important to you (helping the kids with homework, baking your favorite holiday pie). You can set up pages on TakeThem aMeal.com and LotsaHelpingHands. com to organize helpers. Then use the sites to offer blanket thanks so that you don’t feel obligated to respond individually.

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GO EASY ONYOURSELF

There will be laundry on the floor. Take a nap anyway. “Don’t put pressure on yourself to become a vegan or take up an intensive yoga regime in those first few weeks,” says Kennedy. Here are some gentle ways to take care. Stick to routines. Changes in appetite and sleep patterns are common. “Try to eat healthy, get the sleep that you need, and exercise if you feel up to it,” says Kennedy. (Talk to your doctor if you are plagued by insomnia or a lack of appetite.) Practice self-compassion. Now is not the time to beat yourself up about the clove cigarettes that you smoked in college. Focus on what you can do going forward. People who practice self-compassion, treating themselves as they would a good friend, are better at managing the emotional distress associated with a diagnosis, according to a 2013 study published in Personality and Social Psychology Bulletin. Give yourself a break. You’ve gotten through a looong week full of stressful appointments. On the weekend, administer some emotional first aid to slip out of panic mode. “Give yourself permission to focus your energy elsewhere, whether it’s going to a movie or being with friends,” says Kennedy.

PREPAREFOR THE LONGER HAUL

After the first few weeks, your adrenaline may drop. The casseroles may slow. “It’s not unusual for people to feel low once they’ve had time to process all they have been through— even when treatment is going well,” says Coscarelli. But this can also be a turning point. “You start to get your feet on the ground,” concludes Kennedy. “You think, I have a plan. I have a lot of people supporting me. It may not be pretty. But I can do this.”