Is It Better to Say the 'Wrong' Thing Than Nothing?
When talking to a friend or loved one with a chronic illness, allow yourself imperfection. It’s unreasonable to expect that you’ll always say and do the ideal thing.
"We should see a movie," my mom suggested. I was twenty-three, reeling from sudden kidney failure, and my mom had volunteered to donate her kidney.
"Steel Magnolias" had just hit the theaters. Julia Roberts played Shelby, a young woman with renal failure, and her mom (Sally Field) donated her kidney. We soaked up the witty banter, but the story took a sharp turn. Shelby rejects the transplant, goes into a coma, and dies.
After my friend Amy saw the movie, she said, "Wow. 'Steel Magnolias' is just like your life!" Unsure of how to address that tragic comparison, I flinched. But I had to say something.
An awkward hush from family and friends felt disconcerting. Silence can be misinterpreted as judgment or negativity.
That comment is one of many awkward things I've heard as a person living with chronic illness.
Today, in the era of cancel culture, people label these types of comments as "toxic." Friendships are dropped in the name of self-care, and in egregious cases, this may be necessary. But I've also learned that sometimes, when awkward feelings arise, good people say bad things.
Discomfort is understandable. When you consult the internet for tips on "what not to say to someone with chronic illness," an avalanche of advice fills your screen. My Google search yielded 155,000,000 results. Let that soak in—one hundred and fifty-five million!
Hesitation Can Snowball Into Silence
That's a staggering number of words dedicated to the words you should not say to a chronically ill person. And there are millions of us. The Center of Disease Control reports six in ten American adults have one chronic illness and four in ten deal with two.
Ironically, the colossal number of these articles worsens the problem they seek to solve.
Like Voldemort in the "Harry Potter" series, (he who won't be named), the hesitation to speak about chronic illness snowballs into a fear-fueled silence.
Well-meaning people, terrified of saying the wrong thing, say nothing.
The chronically ill often feel like they've crossed a line that separates them from healthy people.
When I was first diagnosed at twenty-two, my life swirled into a medical tornado. It spun with guilt, fear, self-consciousness, concerns about ambition, productivity, love and how to lead a meaningful life. An awkward hush from family and friends felt disconcerting. Silence can be misinterpreted as judgment or negativity.
When illness makes everything feel different, the constancy of our connections becomes an anchor. Conversations offer a shelter from loneliness. Post pandemic, we know how essential connection is for our health. Loneliness is as deadly as smoking 15 cigarettes a day and more lethal than consuming six alcoholic drinks a day, according to the surgeon general of the United States, Dr. Vivek Murthy.
Several studies link loneliness to multiple chronic conditions. The chronically ill often feel like they've crossed a line that separates them from healthy people. As Susan Sontag famously wrote, "Illness is the night-side of life, a more onerous citizenship."
But I have learned this is a fictitious boundary, and what-not-to-say advice furthers this notion of division. I want to sweep the eggshells off the floor and make it less daunting to support the 133 million people who live with chronic illness.
How to Show Up With Sensitivity
Here are suggestions on how to show up with sensitivity: without the fear of using the right or wrong words.
- Focus on listening instead of talking. There’s no need to unleash positive slogans or try to “fix” anything.
- Act naturally. When people act like themselves when I’m going through medical mayhem, it makes me feel like me. Don’t automatically assume a somber tone. Read the room.
- Be compassionate. Assure your person they don’t have to be composed or upbeat. Let them know any mood is okay and meet them where they are.
- Offer your unique gifts. If you love to cook, make a meal for your person. If you are artistic, make a card. If you are funny and the time is right, tell jokes or share memes. If you are a writer, write something. If you are a book person, lend a book.
- Allow yourself imperfection. It’s unreasonable to expect that you’ll always say and do the ideal thing.
My friendship with Amy was so much bigger than one misguided sentence, and our conversation reinforced our connection.
After Amy compared my life to a fictional comatose character who died from kidney failure, her cheeks flashed strawberry pink. Her words landed wrong, but she did something right. She didn't shy away from my reality of dialysis and medical mayhem.
And to be fair, "Steel Magnolias" did showcase parallels to my life, absent the tragic ending.
"Oh my God, no, no, I just mean the dialysis part," Amy blurted. Then she leaned in to squeeze my arm, "not the end!" Of course, she didn't mean the end. (I'd secretly hoped she'd meant I was the spitting image of Julia Roberts.)
So, we did what friends do. Talk. I'd much rather communicate than affix a "toxic" label or encourage silence. We discussed how the movie made us feel, and our hopes and fears about my health. My friendship with Amy was so much bigger than one misguided sentence, and our conversation reinforced our connection.
I fear that what-not-to-say lists (however well intended) are harmful if they lead to detachment. If Amy would have become paralyzed from her use of the "wrong" words, this story would have a different ending.
Decades later, Amy and I laugh about the time she compared my life to a dead version of Julia Roberts. She remains by my side, and I'm grateful. I've learned that offering grace to my friends is good for my health. We won't always have the perfect words. But I've learned what matters most is not what people say, but where they stand.
