Real-Life Hacks for Awkward Social Moments with MS

Sometimes, you need an elegant — or at least funny — escape from embarrassing symptoms and people who mean well.

While I’m grateful for the abundance of medical information on multiple sclerosis (MS) that has become available in recent years, I wish it included some down-to-earth advice on how to navigate those ordinary and often awkward social moments many of us experience with this disease.

However, that never happened, so after living with MS for 25 years, I developed my own set of specialized hacks that may help you, too.

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Act like the poet you are

Due to crossed brain signals, do you occasionally transpose the consonants of two or more words? Known as a “spoonerism,” this verbal tic can result in some rather poetic compositions in the style of Lewis Carroll’s famous nonsense poem, “Jabberwocky.”

If this happens to you when speaking in public, and you accidentally say, “I was born on the jixth of suly” (rather than “sixth of July”), pause for dramatic effect, and then take a moment to jot your wacky words down on a napkin or text them to yourself, and say, “Aha! Now, that’s another good one!”

Share your growing collection with friends, who will likely share their own humorous misspeaks: “I’ll take the “maghetti with spushrooms” or “I wouldn’t ride that roller coaster for all the chee in tina.” String these phrases together and compose your own “Jabberwocky,” a one-of-a-kind poem for the ages.

Gracefully retrieve your shoe when you walk out of it

If you’re like me, and you’ve lost feeling on the bottoms of your feet, it’s not uncommon to completely walk out of a shoe from time to time.

If this happens at home, it’s no biggie, but if it happens in public, it can be a little embarrassing, to say the least.

Not anymore! Once you walk out of your shoe, simply drag your naked foot back until you feel the errant shoe, fling it back into the air with your big toe, and when it hits the ground, glide back into it. To the amused observers, shout: “Ta-da!” as if this is the magic trick you’ve been waiting all your life to perform.

It does take a little practice to nail this move, but if you do it at home, you’ll be a pro in no time.

Explain away the odd twitch

Ever feel a sudden spasm in your leg that causes it to jerk without warning?

No worries. If you’re in public when this happens, simply stand up and shake it off, squealing and pointing to the floor (which works best if you’re near a large rug with an intricate design). Then squeal, “Eeeek, did you see that spider?” Everyone watching will shriek and run away, entirely forgetting about you.

Avoid walking one more step than necessary

Good news: A friend invites you to lunch.

Bad news: She insists on picking you up and driving to the curbside café.

Unlike you, she won’t have a disability permit, and there’s no parking place close by. This means you may have to walk more than a couple of blocks, and if it’s hot outside, the heat and exertion are certain to exhaust you.

But don’t sweat it! In your best European accent, tell your friend, “Drop me off at the curb, dahling, and I’ll get us a table.” She’ll be thrilled, and you’ll be her favorite lunch buddy for life.

The people who see you get out of the car and breeze to the front door of the café will assume you’re a VIP with your own private chauffeur. With your oversized sunglasses, your hair in one of those fancy up-dos, and wearing that cute Maggy London floral dress, people are certain to poke each other and whisper, “Isn’t that Jessica Chastain? Maybe Jennifer Lopez?”

Say nothing. Just give that celebrity half-nod and sashay past them.

Disguise that extra trip to the bathroom

If one of your MS symptoms is an overactive bladder, as is the case with me, you may excuse yourself from the table at a banquet to go to the restroom, only to feel another urge less than 5 minutes later.

Here’s a quick fix for that: When nature calls again, make no apologies. Instead, stand up from the table immediately and announce: “Oopsie, I think I left my lip gloss in the bathroom. BRB.”

Quash those prolonged goodbyes

I love hosting friends and family at my house, but sometimes these events wear me out, and frankly, I’m ready for the crowd to depart not long after dessert.

What complicates matters is that my house has a little foyer leading to the door, and many times, my guests tend to linger there for one last story, one more memory, or one more joke, leaving me no choice but to stand much longer than my legs can bear.

If this has happened to you, I’ve got two solutions. First, demolish your house and build a new one with no foyer at all, just a front door leading to steps with nowhere to stand. Ha, I wish!

If this isn’t possible for you either, try solution number two: After dessert, excuse yourself, flip on the exterior lights, and peer outside the door. When guests ask what’s going on, tell them about your new nighttime visitor, a skunk with a habit of climbing under the hood of strange cars. “As much as I hate for this night to end, I’d feel so bad if Pepé wanted to take a ride in your new Tesla.”

Repel the oh-so-rude question with a loquacious reply

While my closest friends and family members know how to ask about my illness with compassion, nothing galls me more than a glib query from Fred, that pesky third cousin I see only once each year. In the same casual tone one might use to inquire about a minor affliction such as a hangnail or seasonal allergies, Fred never fails to open a conversation by saying, “So … how’s the MS?”

Although he expects me to compress my latest symptoms of one of the most complicated diseases in the history of humanity into a three-word reply, I recently decided to give him the “works.”

I replied: “So glad you asked! Are you familiar with the Brownstein Neurodegenerative Rubric? I’m currently at 67 on a scale of 85.” (The BNR is a complete fabrication, by the way). “Today, I feel as if my legs are encased in concrete. But nothing cheers me up more than educating others about the mystery of multiple sclerosis, and lucky me, here you are! Let’s find a place to sit down, and I’ll tell you all about it.”

Take it from me: Your own “Fred” will never corner you again.

Nip the know-it-all in the bud

I know you have one — the Facebook friend who continually tags you on links to questionable articles about supposed MS cures, such as hot yoga or seaweed diets. Again, I’ve got you covered.

Scroll the internet for the wildest conspiracy theories you can find, such as Martian abductions, the moon being made of real cheese, or that feline humanoids are running the world. Get a link to the story, or even better, write it yourself (how fun would that be?). Post the story on FB and tag your friend with a message such as: “Hey girl, you were right all along!”

The takeaway

I hope the above list was helpful, but I’m willing to bet that you have your own set of social hacks that have helped you navigate the sticky situations created by MS. This disease has thrown us a major curveball. But in the end, MS warriors are stronger because of what we endure every day. We have proven that we can improvise, we can adjust, and most importantly, we can laugh.