You want to help but don’t know how. Experts, patients and friends who’ve been there tell you how to show empathy and give concrete assistance
By Donna Jackson Nakazawa
When I was in my forties, I was paralyzed twice with Guillain-Barré syndrome (GBS), an autoimmune disorder that damages the nerves carrying signals to the brain. During my second bout of GBS, I was bedridden for half a year, with no way of knowing if I’d ever walk again. Even though I needed the proverbial village to continue functioning, I feared asking anything of friends who were already stressed by their hectic lives.
Despite being busy, my friends really stepped up. As one, Tracy Greenfield, recalls, “We hoped we could be the clones you’d need for the tasks you normally did each day.” A “clone” stopped by every morning to put coats and backpacks on my young kids and drive them to school. Another made me grilled cheese sandwiches. Some days, when there was nothing to be done but embrace dark humor, friends simply sat in my room and cracked bad jokes. These friends became the sisters I’d always wanted, women for whom I’d drop anything anytime (and since I got better, I have).
But other friendships frayed. One woman committed to bringing lunch once a week and then almost always canceled, asking, “You’ll be OK until dinnertime?” I understood how busy she was. What I didn’t understand was why she’d volunteer and then renege at the last minute, knowing I couldn’t even get myself a small glass of water.
When a person is sick, close friends can contribute to the healing process. For instance, studies from the U.S. and Australia show that strong, positive relationships may improve outcomes for women with breast cancer and multiple sclerosis. That’s partly because positive situations help mitigate the stress that can boost damaging inflammation in your body.
If inflammation reaches a high enough level, it “contributes substantially to diseases, including some cancers, cardiovascular disease, diabetes, osteoporosis and arthritis,” says Janice Keicolt-Glaser, PhD, professor of psychiatry and psychology at the Ohio State University College of Medicine. Conversely, when a friend does something hurtful to a sick person, that additional layer of emotional stress “can translate into damaging physical responses such as increased inflammation,” says Keicolt-Glaser.
How can you help rather than harm a friend’s healing process? For answers, I spoke with dozens of women who have been ill, friends who have cared for sick friends and experts who have studied what happens between friends when illness enters the picture.
Accept That You’re in Uncharted Territory
As we grow older, more of our friends will become ill. Rates of chronic disease in the U.S. are skyrocketing: 133 million Americans have at least one chronic condition, a number that’s predicted to rise 37 percent by 2030. And the odds that someone you know will come down with a serious condition such as breast cancer or heart disease rise significantly after the person passes age 50.
Many women who are ill prefer to be helped by friends rather than family members. In a national sample, almost 20 percent of women said that if they were sick, their first choice for intimate help—bathing, dressing, toileting—would be a close female friend. “For many women, their friends are really their closest connections, perhaps especially for single women,” explains health sociologist Emerson Smith, PhD, a clinical research professor at the University of South Carolina School of Medicine in Columbia.
If you do take on a caregiving role, prepare to enter a world with no obvious road maps. “You may see dramatic changes in your friend’s personality,” says Irene S. Levine, PhD, professor of psychiatry at New York University School of Medicine and author of Best Friends Forever: Surviving a Breakup. Some people become less talkative when they fall sick, others more communicative. Some go into super-coping mode, while others may catastrophize. “A friend who’s ill may express herself with a harshness or candor or emotionality that you’ve never seen her display before,” says Levine. “We have to remind ourselves that it may well be because she can’t demonstrate those raw feelings to any other friend, perhaps not even to her family.”
Rosalind Joffe, a chronic-illness career coach and author of Women, Work and Autoimmune Disease, suggests responding to a friend’s pain with empathy, by saying perhaps, “That sounds tough. I am really sorry, and I want to understand more.” What you want to avoid is rushing to say something that may seem insensitive, such as telling your friend to have a positive attitude (see “What Not to Say,” below).
“Illness is the litmus test for friendship,” Levine says. “You may feel closer to your friend than ever before. You may share an intimacy you didn’t have when she was well and create a very special bond that’s much stronger. But that can only happen if you really know how to read your friend’s signals.”
Letty Cottin Pogrebin, author of How to Be a Friend to a Friend Who’s Sick, says truly understanding your friend requires “a high level of honesty.” Pogrebin, who was diagnosed with breast cancer in 2009, suggests you acknowledge, “I may not be able to read you well when you’re feeling sick, so I may not know what you want. But I want to know. Tell me what to bring and what not to bring and when you do and don’t want company.”
Several women who have had illnesses told me they were most moved by offers of specific, proactive assistance. Pogrebin suggests saying to your sick friend, “I’m going to do something for you, and I’d rather you tell me what it should be. If you want lamb chops or a foot rub, say the word.”
New Yorker Elizabeth Kaplan, who in the past two years has helped four friends face breast cancer, says that to find out what someone needs most, you often have to ask, “What are you most concerned about?” The answer “provides a clue to how I can help. If my friend is worried about her mother, I can say, ‘I’ll take soup to your mother on Tuesday.’ ”
It’s greatly appreciated when friends offer to combine your errands with theirs, says Mary Woodling of Houston, who battles pulmonary arterial hypertension. They might say, “I’m headed to the dry cleaners. What can I drop off for you?” Or “I’m going to the groomer and thought I’d pick up your dog, too.”
One of the most useful assists is to accompany a friend to the doctor. “Often when a physician delivers difficult news, patients hear almost nothing that’s said after that,” says Ross Koppel, PhD, professor of sociology at the University of Pennsylvania. “And yet the most important part of the conversation can be when the physician is outlining the next steps and various options.”
Know Your Limits
Caregiving takes a great deal of time. One national survey found that women who had assisted ill friends in the previous year did so for an average of eight hours a week for 18 weeks. A likely factor in how much energy you’re willing to commit is whether your friend’s condition will continue over many years or is acute, even terminal. If a good friend is facing a terminal illness, says Levine, “you will be focused on how to help her through to the end of her life in any way you can.” On the other hand, Levine advises, if an illness is likely to last for 20 years, “you have to be realistic about how much you alone can shoulder, and elicit the help of a larger village for the long haul.”
Indeed, says sociologist Emerson Smith, “friendships are more likely to stay intact when a woman is suffering from a short-term, visible and acute illness than when her illness is more difficult to see, chronic and long lasting.” This may be true, said many of the women I spoke with, because setting aside one’s hectic life to be there for a friend with a life-threatening disease is very different from committing to help out every week for decades.
Often, however, the prognosis is unclear, and your pal is scared of what will happen. “As a friend,” says Kaplan, “I consider it my job to get past the fact that this terrible thing happened to someone I love and to see what needs to be done.” But many people can’t check their fears at the door. “Be honest,” Levine says. “Ask yourself, Can I really do this? Some people aren’t comfortable being close to illness.” Maybe you watched your mother die of a similar disease, or you just recovered from an illness and being around someone who’s in that same vulnerable space scares you. In that case, says Levine, “you’re not going to be very useful. Your discomfort will be felt by the person you’re trying to help.”
If you’re hesitating to visit your friend, Levine suggests telling her why rather than letting her guess. You might say, “Your illness stirs up memories of my mother that make it difficult for me to see you in the hospital. So I want to find other ways to support you.”
At the same time, says Levine, “try to extend your limits.” Showing up when a friend is really sick means a lot. And not showing up might mean losing that friendship or feeling guilty for years afterward. Levine suggests you may be able to tolerate visiting if you do it in a strategic way: “Set a time limit in your mind for how long you’ll stay. Or go with a strong friend who understands your concerns.”
Help Your Friend’s Partner Too
Being a good friend to your friend means factoring in the gap that may exist between what her partner or spouse can offer emotionally and logistically and what your friend may need. Again, honesty is the goal. Say to your sick friend’s partner, “I want to help, and part of that is finding out how I can be helpful to you.” Be practical. Offer to fill the partner’s gas tank or give him or her a gift card for groceries with delivery. You can relieve strain on your friend’s family—and hence on her—by helping her partner enjoy some free time. Pogrebin suggests you might say, “Why don’t you schedule a tennis game or go to a new movie? I’ll hold down the fort while you’re gone.”
“Illness strikes the entire family,” says Katherine Alford of New York City, who faced stage 2 breast cancer. “The patient gets all the focus, and the spouse needs to have someone to bitch and moan to about how hard his or her own situation is. When my friends provided an outlet for my husband to vent and talk, it was a gift to me, too.”
Levine advises communicating with your friend’s partner throughout the illness. “Don’t make presumptions about what you think is going on or what the prognosis is,” she says. Ask the partner questions. “It gives him or her someone to talk to, and it helps you stay attuned to your friend’s state of mind.”
If the partner prefers not to talk, he or she will let you know, directly or indirectly.
Maintain Some Normalcy
Joffe, the chronic-illness career coach, has lived with multiple sclerosis for more than 35 years, and sometimes, she says, people feel that since she’s sick, they “can’t tell me anything good about their lives. They narrow the friendship down to the idea that illness is the only thing going on for me.” Joffe would rather her friends understand that she is coping as well as possible with her condition and has a full life.
Even those facing more pressing health threats need their circle to know they haven’t totally checked out on what’s happening around them. Pogrebin suggests that when a friend is ill, you make sure to “keep sharing your life, appropriately.” Of course, you don’t want to show up at your friend’s bedside in your yoga clothes, complaining about how hard it is to do a headstand now that you’re 50. But share your life stories, as in, “Hey, would you like to hear the funny thing that happened to Paul yesterday when he went to the grocery store?”
“Serious illness consumes so much energy and conversation,” says my friend Tracy Greenfield. “Occasional distraction can be beneficial. Sometimes you have to practice acting normal, even when things aren’t.” Concurs Kaplan: “I don’t want my friend who is ill to feel robbed of her old life. If she always liked stories about the boss, I still tell stories about the boss.” The point, Kaplan says, “is to be observant as to what makes her light up.”
Trying to do right by a sick friend does not always turn out well. Sometimes, says Catherine Guthrie of Somerville, Massachusetts, “people say the wrong thing simply because they are scared, or your situation reminds them of their own fears of getting ill or of losing someone they loved.” Still, Guthrie, who has twice been treated for breast cancer, feels “it’s better to have a friend make a botched attempt at showing you they care than to never try at all.”
I realize now how fortunate I was to have so many caring friends during my years of illness. Until I wrote this story, I had never stopped to ask my friends what that experience had been like for them. Greenfield told me that the one thought on her mind was, “If I could lighten your load in some way, that might give you more time and energy to get better.”
Recently, Greenfield says, she found an old piece of paper stuck to her refrigerator with a magnet. It was a list of foods I was and was not allowed to eat. “I almost tossed it,” she recalls. “But then I put it back on my fridge, looked at it—and smiled.”
Sites That Can Help You Provide Help
Illness quickly derails the daily activities of life—food shopping, housecleaning, child care—but a number of websites let friends lighten thefamily’s load. Meal Train offers a shared calendar that allows communities to organize meals for families coping with illness. Lotsa Helping Hands provides ways to organize support for the caregiver and coordinate activities, from preparing meals to dog walking. For keeping everyone informed about the patient’s progress, Caring Bridge allows you to create a personalized, private social-networking site.
DONNA JACKSON NAKAZAWA is an award-winning health journalist and the author of The Last Best Cure.