Ode to chronic illness
Life with Ménière’s disease—or any chronic illness—can feel like you’re starring in your own comedy
Chronic illness doesn’t come with a neon sign or a dramatic soundtrack. Most days, you look perfectly fine—right up until the moment you don’t. But until others witness your impersonation of a whirling dervish, they may assume you’re exaggerating, overreacting, or auditioning for sympathy. But hey, you didn’t audition for this. You were hired on the spot for this grand script that feels like it was written by a team of writers from Saturday Night Live.
The real plot twist, though, isn’t the dizziness, the ringing, or the sudden need to sit down before you fall down. It’s the biases that swirl around you like fruit in a blender.
For starters: “You don’t look sick.” People say it with the same earnest confusion they reserve for gluten-free cupcakes. “Gee, thanks,” is answer enough. You don’t need to justify your situation. High cholesterol, diabetes, and many cancers, among others, don’t come with flashing lights or a warning bell either.
Then there’s the “Have you tried…?” crowd. These are the folks who believe every medical mystery can be cured with essential oils, yoga, or the advice of a cousin who swears by eating only beige foods. You could tell them Ménière’s is a chronic, unpredictable condition, but don’t waste your breath. They smell your pain. They see that you need their help. Don’t delude yourself, these people are here to “fix” you.
Becoming the social outcast
When it comes to your social life, things get more interesting. Coping with the stigma of chronic illness shouldn’t be on your itinerary, but you’ll soon discover the reality. Cancel plans once because you’re dizzy, and people nod sympathetically. Cancel twice, and suddenly you’re the flaky friend who “must not want to come anyway.” Chronic illness doesn’t run on a schedule, but society does, and it doesn’t appreciate late-breaking plot twists. You become the unreliable narrator of your own life, and the plot is always thickening.
Tiptoeing through the office
Workplaces add their own flavor of bias. If you ask for accommodations—like a quieter space, flexible hours, or a room with better acoustics—you risk being labeled “difficult” (aka, the problem child) and are suddenly fodder for their ongoing and mostly monotonous attempts at humor. More often, however, people will keep their thoughts to themselves and just proceed by excluding you or moving on to someone else who is less of a troublemaker. Chronic illness turns you into a tightrope walker, balancing your health on one side and everyone else’s expectations on the other.
Giving yourself a break
The assumption that chronic illness makes you fragile, gloomy, or perpetually overwhelmed is crap. In reality and shaped from experience, you’ve become tougher than a two-dollar steak. You’ve become the master of improvisational comedy, because if you don’t find the humor in all of this, you just might cry—and crying just makes the tinnitus worse.
Living with Ménière’s, as with any chronic illness, means navigating a world that doesn’t always understand you. It also means discovering resilience, grit, and the ability to stand up for yourself—and others—when the time comes. It’s a process. Sometimes you just don’t feel the love, and that sucks. And so, I leave you with a quote from one of my favorite writers, Anne Lamott, a person who has seen her share of adversity and knows how to cut to the heart of it:
Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work; you don’t give up.
