Listening well and responding in kind require not just retraining our brains, but also our mouths.
When people who are struggling with something come to us, most of us want to listen well. We want to really hear what they’re sharing with us and then say the exact right thing that helps the person feel better and makes their problem vanish.
We desire to fix people. We want to be heroes. Our tools: a pair of ears, our tongues, and our perceived boatload of empathy.
However, problems and struggles, especially health-related ones, often aren’t fixable. In fact, they may be terminal, or in the case of multiple sclerosis (MS), chronic. In these cases, instead of fixing anything, words can wound, becoming weapons even with the best intentions.
I remember when a very sweet and well-meaning friend, not a mean bone in his body, told me that his aunt with MS uses a cane. He meant it, I think, to be a point of connection. He made sure to communicate that she was a pretty hip person who upped the “cool” factor of cane use.
I now know that mobility aids, like canes, are tools of empowerment. I’m inspired by the many people who confidently embrace the use of a cane. And I acknowledge that I may use one in the future.
However, at the time my friend brought it up, the thought of no longer being ambulant was terrifying. Instead of making me feel understood, it gripped me with fear.
While I can appreciate that people always (or at least usually) mean well, I want to offer suggestions for what to say in the place of replies that sting and trivialize suffering.
Not “looking sick” may seem true, except that the reality is that no matter how healthy I seem, the real and lasting scar tissue (the word sclerosis is Latin for scar) on my brain and spine is going nowhere.
The symptoms people with MS feel — fatigue, numbness, tingling, brain fog — may be invisible to everyone else, but I assure you, they’re a sometimes daily occurrence. Making a comment about someone not looking sick is built on a pretty big assumption about how someone’s really doing.
It’s been 5 years since my initial diagnosis. When I was first diagnosed, I didn’t know anyone with MS. I’ve since met lots of people with MS, befriended a few of them, and met countless people whose great aunts or grandmothers (or uncles twice removed) have MS.
Everyone has a story about a distant family member with MS, and those people want to tell you that story about their second cousin’s miraculous healing and to suggest you should try what he did.
Not only is this unhelpful, it’s hurtful. It immediately diverts the conversation away from what the person with MS just shared and shines the spotlight on your heroic effort to fix it (again, with good intentions).
Advice that begins in this manner — again, while well-intentioned — is hurtful.
The person living with MS has just shared that fatigue is taking a toll on them or that their body gets numb and tingly whenever they go outside in the summertime. Instead of responding with empathy, you’ve offered a cure that won’t work and have trivialized their pain.
This is a common response. Everyone gets tired, true. MS fatigue, however, is known to be different, and the suggestion that a quick nap or earlier bedtime might help is hasty and wounding.
[Deep breath.] Yes, multiple sclerosis isn’t fatal or terminal. Yes, people with MS are aware of countless other diseases and conditions with adverse symptoms, if not worse outcomes (not to mention everything else that’s terrible in the world like war, systemic racism, spiders in my shower, etc.).
But do we really want to play this game? That’s a pretty big rabbit hole to go down. And comparison, whether it’s to something better or something worse, is rarely a good idea.
The renowned author and researcher Brené Brown calls this “silver lining.” When things are silver lined, it’s clear the person sharing wasn’t listened to very well.
This one applies to supplements, disease-modifying therapies, exercises, diets — all of it.
Here’s the thing: If I want advice, if I’m really seeking an opinion about X, Y, or Z, I’ll ask for it. I will not be vague.
I will straight up say, “Hey, I’ve been reading about different foods that may impact autoimmune conditions. What would you think if I exclusively ate purple foods?” (This is an absurd hypothetical example because I’m not here to start a food debate. Experts and laypeople have lots of opinions on food.)
The point is, when I’m sharing, I generally just need to get something off my chest. I’m not looking for answers. And I’m definitely not looking for supplements with zero peer-reviewed studies to back them up.
Outlook and mindset are important, and mental health struggles are real, MS or not. But when someone with MS is told to have a positive attitude or to keep their chin up, it’s really hurtful, minimizing, and deflating.
In reality, a positive attitude won’t reverse scar tissue, nerve damage, or daily symptoms. While working on mental health is important, no amount of manifesting good vibes will cancel out multiple sclerosis.
Plus, telling someone they need something is a surefire way for you to be marked as an unsafe person with whom to share.
At present, I’m doing well. I haven’t had an active lesion in over 2 years. (The last one was a doozy, let me tell you. Laying prostrate and diapers were involved.)
Since my last attack, I’ve made a full recovery, enjoyed time with my family indoors and out, participated in a variety of workouts, cycled my butt off in two Bike MS events, gone back to work as a full-time teacher, and maintained all my favorite hobbies: reading, movie-watching, painting.
I’m doing well and I also live with the daily symptoms, mainly fatigue, which is a beast.
I’m doing well and I also know that MS attacks can come out of nowhere. Mine did. I’m no longer anxious on a daily basis about this scary fact, but it’s always in the back of my mind.
Telling someone they’re doing so well, couched with the word “but,” basically tells your friend that you heard what they said, but disagree. Not helpful.
I saved the best for last. And by the best, I mean the worst.
This one’s the pits. Maybe your worldview disagrees, but may I gently offer up that if your worldview contains “everything happens for a reason,” then your worldview kind of, well, sucks.
Kate Bowler, one of my favorite writers who happens to be living with stage 4 cancer, shared that countless people told her this very thing after her diagnosis. She didn’t mince words when talking about just how hurtful and damaging saying “everything happens for a reason” is.
The title of her best-selling memoir is “Everything Happens for a Reason (and Other Lies I’ve Loved),” and the name of her podcast is “Everything Happens.”
Everything happens. Full stop. Things happen. Some are good, some are not so good, and some are the absolute worst.
Most of these examples, the bad and the good, apply beyond the weird little world of MS and can be boiled down to four simple words: Be there, listen well.
I can apply them to my many friends with thyroid conditions and the friends I’ve known who’ve endured chemotherapy and radiation for cancer. They apply to countless people with mental health struggles.
I offer them here as responses specific to MS because that’s my field of expertise, and the general public knows so much less about MS than other diseases.
I want to change that because, whether you know someone now with MS or not, you’ll meet someone with MS at some point in life.
These are also good reminders for myself. I know what I don’t want to hear when I share about my journey with MS, but I’d be lying if my good intention instinct doesn’t kick in when others share about their own health stuff.
It takes practice to retrain not just our brains, but our mouths, to take the harder but more generous route of listening well and responding in kind.
Erin Vore is a high school English teacher and enneagram four who lives in Ohio with her family. When her nose isn’t in a book, she can usually be found hiking with her family, trying to keep her houseplants alive, or painting in her basement. A wannabe comedian, she lives with MS, copes with a whole lot of humor, and hopes to meet Tina Fey one day. You can find her on Twitter or Instagram.