‘You Look Great’ and Other Lies

[Guest guest]

This article talks about people with cancer but I thought it applies to people

with chronic pain.

__________________

From the NY Times, Published: June 10, 2011

‘You Look Great’ and Other Lies

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.â€

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, , 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.â€

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.â€

Even worse, the recommenders follow up! 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.â€

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.â€

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.

Related

Health Guide: Cancer

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.â€

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.â€

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.â€

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.