By Janine McGoldrick
It has been nine years since I was diagnosed with Ménière’s disease. “A disease? Am I going to die?” I asked my doctor.
He explained Ménière’s wouldn’t kill me but, unfortunately, it is a chronic condition with no cure. I’d have to learn to manage the symptoms and, well, just live with it. Easier said than done. Ménière’s symptoms can include horrible bouts of vertigo and nausea, drastic hearing loss, roaring tinnitus (ringing in the ear), painful ear pressure, extreme fatigue, and severe imbalance—just to name a few.
The film will create a visceral viewing experience for audiences so they directly experience the effects of the condition. Through creative camera movements and innovative sound design, it will simulate Ménière’s symptoms so viewers not only learn but also feel.
Ménière’s is an “invisible” illness, not widely known and difficult to explain. Google and WebMD became my best friends but are no substitutes for personal empathy and understanding—two things desperately needed by people with an enduring health condition. Unfortunately, hearing a list of symptoms can’t give someone a full picture of what Ménière’s does to you. I have spent nearly a decade struggling to describe my condition to my family, friends, employers, and even strangers on the subway who think I’m drunk because I have difficulty walking straight. Now, I admit I love me some Guinness, but when I explain, “it’s not the alcohol, it’s the Ménière’s,” I’m met with blank stares.
Complicating things further is the fact that a Ménière’s “attack” can happen anywhere, at any time, with little warning. One moment you’re fine, working at your desk or making dinner. Then, like a flick of switch, pressure begins to build in your head, you are thrown off balance, and everything around you starts to spin so violently you collapse and can’t move. This can last for a few minutes or a few weeks. As it all takes place inside your head, and happens while you “look healthy,” others—including doctors—are skeptical it’s even occurring, leaving you feeling anxious, depressed, and isolated.
Since no one I knew had ever heard of Ménière’s, I turned to social media support groups to find the connection I was missing. Upon talking with others in the Ménière’s community, I heard similar repeated refrains: "No one understands"; "My family doesn’t get it"; "I’m alone on this journey." As a veteran entertainment industry executive, I am acutely aware of the power that film and television have to enlighten, so I decided to develop “Unheard: The Ears of Ménière’s,” a documentary that will shine a light on this debilitating disease which has remained unheard for far too long.
The film will create a visceral viewing experience for audiences so they directly experience the effects of the condition. Through creative camera movements and innovative sound design, it will simulate Ménière’s symptoms so viewers not only learn but also feel.
Research for Ménière’s disease, like many vestibular disorders, is vastly underfunded. In order for people to have a better quality of life, this needs to change. The film’s goal is to elevate Ménière’s in the public consciousness and attract funding for more research to find better treatments and hopefully a cure.
I’m grateful to Hearing Health Foundation (HHF) for supporting our film through recommending medical experts as well as patients of the condition who have shared their story with HHF. My hope is that Ménière’s becomes as recognizable as Parkinson’s, diabetes, and multiple sclerosis. So, the next time I need to call out sick, cancel plans, or ask for help in public after stating, “I am having a Ménière’s episode,” I am met with recognition and not incomprehension.
Janine McGoldrick is an entertainment strategist and producer. She can be reached via email janine@2ndchapterproductions.com, on Twitter and Instagram at @2ndChapterProd, and at 2ndchapterproductions.com.
“Unheard: The Ears of Ménière’s” is seeking corporate sponsorships and tax-deductible donations to begin production. To learn more, see earsofmenieres.com.
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