Most people will never understand what it’s like to stare down the barrel of a complex medical diagnosis.
That’s not to say they will never get sick. They will. And it might be terrible. But most of the time, it will at least be easy to comprehend. The implications will be clear. The treatment options will be explained and the doctor will be knowledgeable. They will know what to do next.
But for the unlucky few who suffer from a rare disease, like I do, there are no certainties. There is little understanding. There is pain, confusion and despair. Hope is simply not a part of the equation. And that’s a big problem, because there is always hope.
Most people have never heard of Meniere’s disease. When I was diagnosed, I had never heard of it either. To this day, I’ve only ever met one other Meniere’s patient in person. But it’s out there, silently destroying lives in the shadow of the general public’s consciousness.
Over the years, I’ve tried to think of a good way to explain Meniere’s disease, but it’s hard to express. There is nuance that gets lost in translation. Even my fiancée Megan, who has been there for me every step of the way, gets teary eyed at some of my writing and asks, “Is this really how you felt?”
If our closest friends and family don’t understand, it’s hard to be understood by the rest of society. And that’s a major hurdle for raising awareness.
So I’m going to give a shot, and try to explain what it’s like to walk in my shoes.
If you suffer from Meniere’s disease, share this with your friends and family.
Imagine for a moment:
I want you to close your eyes and think back to a time in your life when everything was good.
Now imagine one day, you are walking along when all of a sudden, the world starts to violently spin around you. You fall to the ground and hold on for dear life.
Unbeknownst to you, you are experiencing vertigo. It’s like you’re drunk, but you haven’t had a sip of alcohol.
Your brain, suddenly in shock, thinks you might be poisoned, so to mitigate the perceived threat, a wave of nausea floods your system. You start to vomit over and over again. Your body wants to get the poison out. But it doesn’t help, because you’re not poisoned. The minutes turn to hours, and the world is still spinning. You’re terrified and confused, and you can’t walk.
In this moment of crisis it won’t occur to you, but there have been so many things you have taken for granted, processes quietly working away in the background of your brain to keep your world intact.
You believe equilibrium is a constant like gravity, but it’s not. Your balance comes with no guarantees. It’s controlled by your vestibular system, and that system can become compromised.
Hours later, when the room finally stabilizes, you are left with more questions than answers. “What’s wrong with me!?!” you ask God, or the universe, or maybe no one in particular.
So you go to your doctor. But your doctor doesn’t know what’s going on either. If you’re lucky, you’ll end up visiting an ENT who has some experience with balance disorders. If you’re unlucky, you may end up going years before you speak with anyone who has any idea of what’s going on, suffering with no explanation.
If you do get lucky, your “luck” might sound something like this: “We’re going to have to run some tests, but it looks like you have Meniere’s disease. There is no cure. They don’t know what causes it. Each attack of vertigo will damage your hearing slightly, and over time can destroy it completely. You have to stop drinking coffee and alcohol. You have to lower your stress. You have to eat a low sodium diet.”
You leave the doctor’s office scared and broken. You want to understand but nothing makes sense. Your problem just became very real, and very permanent.
When you get back home you go to Google and you start searching. You try to figure it out. But everything gets worse, because so much of what you find conflicts with everything else you find.
Quickly, a picture of the worst case scenario becomes fixed in your mind. And all the while you’re suffering. You are having vertigo attacks. There is a constant feeling of pressure in your ear. Your hearing is impaired and you panic about going deaf. Inexplicably, your senses turn against you. Bright lights and noisy environments overwhelm you in an instant.
Your job is in jeopardy, too. Your employers don’t understand. They think you’re overreacting.
That’s assuming you still have a job. The fear of having a vertigo attack makes it hard to drive, or even leave the house. And when you aren’t having vertigo, you are still cognitively impaired by brain fog and fatigue.
Nothing is certain anymore, and no one understands. You look fine, so no one thinks you’re sick, but you are, and in a big way. No one believes your pain and you don’t know what to do next.
The Power of a Story:
It’s a dark picture, I know, and it’s easy to see why so many people lose hope.
But it’s not all bad.
Many people are able to improve their symptoms with careful lifestyle management and medication. In more stubborn cases, a surgical approach can help as well. Many people, like me, learn to live in harmony with their disease, and go on to live productive lives.
However, it’s not an easy journey. And when the people around us don’t understand, it can make everything so much more difficult. Yet it’s possible to succeed, and that possibility is what gives us hope. I started this blog, and wrote a book, to show people that.
It took years for me to find ways to cope and manage my symptoms. I share my stories with the world, because if information is the missing piece, then no one should ever have to suffer for years.
If you, or someone you love, have Meniere’s disease, I encourage you to share your story, too.
The power of your story is enormous and can help the cause in so many ways. It will help and inspire others. It will raise awareness and educate those around you. It will help you process your life and bring you clarity.
Start a blog or a support group. Write a journal or a book. Share a post or a tweet. Or even just leave a comment on the bottom of this page. There is no wrong way to begin.
If you live to inspire, one day, someone will say, “Because of you, I never gave up.”
You can help make difference.
In a world where no one is aware, our voices will be heard together, and everyone will understand.
Want to learn more?
My new book – Mind Over Meniere’s: How I Conquered Meniere’s Disease and Learned to Thrive – is available now on Amazon as an eBook and paperback!
No matter where you are in your journey with Meniere’s disease this book will help you improve and 20% of the profits through September will be donated to the Vestibular Disorders Association in support of Balance Awareness Week!