In my travels on the web recently I found this article published in the New York Times. It is one of the most honest articles I have come across in a long time and incredbly refreshing for someone in my position. I have since sent it to everyone I know in order to help myself and them, as being ‘sick’ is not only an ordeal for the individual but also for anyone in contact with them. I found this to be a perfect guide for anyone associated in any way to illness and even to disability.
‘You Look Great’ and Other Lies
By BRUCE FEILER
MY friend sat down and ordered a stiff drink. I didn’t think of her as the stiff-drink kind. An hour later, after our spouses drifted off into conversation, she leaned over the table. “I need your help,” she said. “My sister has a brain tumor. I don’t know what to do.”
Three years ago this month, I learned that I had a seven-inch osteosarcoma in my left femur. Put more directly: I had bone cancer. That diagnosis led me down a dark year that included nine months of chemotherapy and a 15-hour surgery to reconstruct my left leg.
At the time, my wife, Linda, and I were the parents of 3-year-old identical twin girls, and we were often overwhelmed with the everyday challenges of having a sick dad, a working mom and two preschoolers. We survived with help from many people. Our siblings organized an online casserole club, so friends could buy us dinner through a meal service. Grandparents rotated in and out of our basement. My high school classmates made a video at our reunion.
But as my friend’s query suggested, some gestures were more helpful than others, and a few were downright annoying. So at the risk of offending some well-meaning people, here are Six Things You Should Never Say to a Friend (or Relative or Colleague) Who’s Sick. And Four Things You Can Always Say.
First, the Nevers.
1. WHAT CAN I DO TO HELP? Most patients I know grow to hate this ubiquitous, if heartfelt question because it puts the burden back on them. As Doug Ulman, the chief executive of Livestrong and a three-time cancer survivor, explained: “The patient is never going to tell you. They don’t want to feel vulnerable.” Instead, just do something for the patient. And the more mundane the better, because those are the tasks that add up. Want to be really helpful? Clean out my fridge, replace my light bulbs, unpot my dead plants, change my oil.
2. MY THOUGHTS AND PRAYERS ARE WITH YOU. In my experience, some people think about you, which is nice. Others pray for you, which is equally comforting. But the majority of people who say they’re sending “thoughts and prayers” are just falling back on a mindless cliché. It’s time to retire this hackneyed expression to the final resting place of platitudes, alongside “I’m stepping down to spend more time with my family,” or “It’s not you, it’s me.”
3. DID YOU TRY THAT MANGO COLONIC I RECOMMENDED? I was stunned by the number of friends and strangers alike who inundated me with tips for miracle tonics, Chinese herbs or Swedish visualization exercises. At times, my in-box was like a Grand Ole Opry lineup of 1940s Appalachian black-magic potions. “If you put tumeric under your fingernails, and pepper on your neck, and take a grapefruit shower, you’ll feel better. It cured my Uncle Louie.”
Even worse, the recommenders follow up! Jennifer Goodman Linn, a former marketing executive who’s survived seven recurrences of a sarcoma and is compiling a book, “I Know You Mean Well, but …,” was approached recently at a store.
“You don’t know me, but you’re friends with my wife,” the man said, before asking Ms. Linn why she wasn’t wearing the kabbalah bracelet they bought her in Israel.
4. EVERYTHING WILL BE O.K. Unsure what to say, many well-wishers fall back on chirpy feel-goodisms. But these banalities are more often designed to allay the fears of the caregiver than those of the patient. As one friend who recently had brain surgery complained: “I got a lot of ‘chin ups,’ ‘you’re going to get better.’ I kept thinking: You haven’t seen the scans. That’s not what the doctor is saying.” The simple truth is, unless you’re a medical professional, resist playing Nostradamus.
5. HOW ARE WE TODAY? Every adult patient I know complains about being infantilized. The writer Letty Cottin Pogrebin, who had breast cancer, is working on a book, “How to Be a Friend to a Friend Who’s Sick.” It includes a list of “no-no’s” that treat ailing grown-ups like children. When the adult patient has living parents, as I did, many mothers in particular fall back on old patterns, from overstepping their boundaries to making bologna sandwiches when the patient hasn’t eaten them since childhood. “Just because someone is dealing with a physical illness,” Mr. Ulman said, “doesn’t diminish their mental capacity.”
6. YOU LOOK GREAT. Nice try, but patients can see right through this chestnut. We know we’re gaunt, our hair is falling out in clumps, our colostomy bag needs emptying. The only thing this hollow expression conveys is that you’re focusing on how we appear. “When people comment on my appearance,” Ms. Linn said, “it reminds me that I don’t look good.”
Next time you want to compliment a patient’s appearance, keep this in mind: Vanity is the only part of the human anatomy that is immune to cancer.
So what do patients like to hear? Here are four suggestions.
1. DON’T WRITE ME BACK. All patients get overwhelmed with the burden of keeping everyone informed, coddled and feeling appreciated. Social networking, while offering some relief, often increases the expectation of round-the-clock updates.
To get around this problem, I appointed a “minister of information,” whose job it was to disseminate news, deflect queries and generally be polite when I didn’t have the energy or inclination to be. But you can do your part, too: If you do drop off a fruitcake or take the dog for a walk, insist the patient not write you a thank-you note. Chicken soup is not a wedding gift; it shouldn’t come with added stress.
2. I SHOULD BE GOING NOW. You’ll never go wrong by uttering these five words while visiting someone who’s sick. As Ms. Pogrebin observes of such visits, don’t overstay your welcome. She recommends 20 minutes, even less if the patient is tired or in pain. And while you’re there, wash a few dishes or tidy up the room. And take out the trash when you leave.
3. WOULD YOU LIKE SOME GOSSIP? One surefire tip: a slight change of topic goes a long way. Patients are often sick of talking about their illness. We have to do that with our doctors, nurses and insurance henchmen. By all means, follow the lead of the individual, but sometimes ignoring the elephant in the room is just the right medicine. Even someone recovering from surgery has an opinion about the starlet’s affair, the underdog in the playoffs or the big election around the corner.
4. I LOVE YOU. When all else fails, simple, direct emotion is the most powerful gift you can give a loved one going through pain. It doesn’t need to be ornamented. It just needs to be real. “I’m sorry you have to go through this.” “I hate to see you suffer.” “You mean a lot to me.” The fact that so few of us do this makes it even more meaningful.
Not long ago, I reached out to my friend’s sister, Amy, who had endured three surgeries in the previous six months for a tumor in the thalamus. She was undergoing physical therapy and had just returned to work. What most annoyed her, I wondered?
“I liked having the family around,” she said, referring to her six siblings and their five spouses. “But I had a lot of issues with my room seeming like a party and my not being in a place where I could be down if I wanted.”
The most helpful tip she got? “People reminded me that I had a free ‘No’ clause whenever I needed it. Especially as someone who tends to please, that was helpful.”
So in the end, what would she say to someone like her sister who leaned over and asked for advice?
“Fully embrace the vulnerability of the situation,” she said. “I would never have gotten through it if I hadn’t allowed people in.”
That even included a new boyfriend, who became so intimately involved in her recovery that she allowed him access to her innermost self. The two became engaged in the I.C.U. and plan to marry next year.
Bruce Feiler’s memoir, “The Council of Dads: A Story of Family, Friendship and Learning How to Live,” has just been published in paperback.