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’ll 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. We’re not even playing the same game. There is little understanding, and a lot of pain, confusion and despair.

For so many of us, hope is simply not a part of the equation. And that’s a big problem, because there is always hope.

My Meniere’s Disease diagnosis:

You’ve probably never heard of Meniere’s disease. I hadn’t either. It’s an incurable balance disorder that only affects about 0.2% of the population

Luckily, it’s not fatal, but it can your make life insanely difficult with terrible vertigo, constant ringing and a feeling of pressure in your ears, and progressive hearing loss.

Over the years, I’ve tried to think of a good way to explain what it’s like to live with Meniere’s disease, but I’ve found it’s hard to express. There’s nuance that gets lost in translation. Even my wife Megan, who has been there for me every step of the way, tears up at some of my writing and asks, “Is this really how you felt?”

When our closest friends and family can’t understand, it’s hard to expect understanding from anyone else. And that’s a problem.

But I’m going to give a shot, and try to explain what it’s like to stumble around in my shoes.

Imagine for a moment:

I want you to close your eyes and think back to a time in your life when things were going especially well.

Now imagine that you’re walking through your kitchen one day when all of a sudden, the room starts to violently spin around you. All you can do is collapse to the ground and hold on for dear life.

You won’t know it, but you’re experiencing vertigo. It’s like you’re incredibly drunk, but you haven’t had a drop of alcohol.

Your brain, suddenly in shock, thinks you’ve been 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 haven’t been poisoned.

The minutes turn to hours and the room is still spinning. But you have no idea why. You’re terrified and confused, and you can’t walk. It’s hard to even open your eyes.

A Body in motion stays in motion:

In this moment of crisis, it won’t occur to you, but there have been so many things you’ve taken for granted. Processes quietly working away in the background of your brain to keep your world intact.

You thought equilibrium was 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.

When the room finally stabilizes, you’re 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 the 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 feeling broken and afraid. You want to understand but nothing makes sense any more. Your problem just became very real, and very permanent.

Dr. Google does not know best:

So you go on Google to find some answers. But there are none. Actually you’re worse off, 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 that seem to strike at random. 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 leave the house. And eve when you aren’t having vertigo, you’re 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. A lot of people are able to improve their symptoms with careful lifestyle management and medication. In some cases, surgery can help, too. Many people, like me, learn to live in harmony with their illness, and go on to live productive, or somewhat productive, lives.

It’s just not an easy journey. And when the people around us don’t understand, everything else is that much more difficult. Yet it’s possible to succeed, and that possibility is what gives us hope. I started a blog, and wrote a book, to show people that. That no matter how bad life may seem, there is always hope. And there is always a way forward. 

At 29 years old, my life isn’t what I thought it would be and my “normal” is anything but normal.

But I love my life again. And there was a time when I never thought I would, or could. I’ve started businesses, gotten married, traveled, and found purpose, all in the face of a difficult and unwanted limitation.

I live to fight another beautiful day. Meniere’s disease be damned.

Know someone with Meniere’s disease?

I have another blog: Mind Over Meniere's

My book, Mind Over Meniere's: How I Conquered Meniere's Disease and Learned to Thrive is available on Amazon!