Struggling to Accept My Diagnosis With Ménière's Disease


I never know how I’m going to feel when I wake up. There’s a moment every morning when I pick my head up off the pillow that my world either balances out, or it continues spinning. That’s when I know it’s either going to be a rough day or a good day. Either I’m going to be able to play with my kids, go to the park, take a walk, do some laundry, manage to wash the dishes, possibly clean the bathroom…or I’m going to be stuck immobile on the couch.

The very thought of moving, or doing any activity, makes me not only sick to my stomach but overwhelmed and frustrated. I feel volatile and unstable, physically and mentally. I’ve heard that there is hope, but I am still struggling to find some. I’m only good at distraction so far.

 

I went through two separate doctors, a physician’s assistant, med express and two different specialists over the course of four years. My vertigo wasn’t bad in the beginning. It would only last for a few minutes to an hour. There’s nothing wrong with me, they said. I had hope that these were isolated incidents. I didn’t even know what Meniere’s disease was.

In April of 2016 I experienced my first real vertigo attack. I’m told that the attacks normally don’t go on for longer than 24 hours, but mine do. From April to September of that year, with the exception of a few days here and there, I was dizzy every day. By dizzy I don’t mean lightheaded, or unsteady, or that my head itself is spinning.

Imagine for a minute that you’re spinning in circles, faster and faster and faster, so you fall to the ground because you can’t stand up anymore. After a moment of lying flat your head balances out and the world returns to normal. For what seems like six months out of a year now, my head does not balance out. My world does not return to normal. Something in my ears has broken – and they don’t know how to fix it. From April to September, the world seems to careen out of control around me while I desperately try to remain still.

I don’t look sick, I may not even always act sick, but on a good day I am foggy and out of it. If I’m lucky, everything doesn’t always look clear, like looking at the world through the bottom of a glass. I can’t hear as well as I used to. I’ve had tinnitus most of my life so I’m used to it, but occasionally it’s so loud I have to place my hands over my ears for a moment and wait for it to stop. My ears ache and feel like someone has pumped them up with air – that’s all on a good day. My bad days, I can barely sit up. I don’t want to open my eyes because it makes me sick to my stomach. The feeling of spinning that I explained earlier is constant and debilitating. It’s all I can do to remain in a sitting position, functioning and awake.

I don’t look sick, but I am. Something in me is fundamentally broken and is causing me to spin while you can stand still. I crave that stillness.

When I went to my new ENT this spring my doctor had given me so much hope that this was going to be an easy fix; after all, I’m only 27. There can’t possibly be much wrong with a person so young – and yet there I sat in a room with a specialist avoiding my gaze, and she tells me I have Meniere’s disease. She told me to take some pills and call her in two months to see how I’m doing.

I’ve read all these blogs and articles, and apparently people have written books on how you can overcome this thing. You can’t ever get rid of it, but you can learn to live with it. That’s great, and maybe someday Ill get there – but I’m not there yet.

For me, I’m still at that point where I’m trying to accept that I will always have this condition. Doctors say they don’t know what causes Meniere’s and there’s no real treatment and no real cure. They’re feeling around in the dark trying to figure out what works for each individual person. What works for you may not work for me, what worked for that girl won’t work for Aunt Edna, and so on and so on.

Today I’m not OK, and I don’t know if I will be tomorrow either. Right now I’m experiencing an episode and am headed into day five; talk about rubbing salt in the wound.

I’m not OK, but I think I will be. I need time to process, to accept the broken bits of me, but if there’s one thing I’ve always been, it’s a survivor. I usually find a way.

I’m 27 years old, and this is my life with Ménière’s.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via m-gucci.

TOPICS
JOIN THE CONVERSATION

Related to Meniere's Disease

blurred motion of people walking down the street

How Vertigo Affected Far More Than Just My Hearing

In hindsight, Menière’s disease had been riding alongside me for months. Yet each time vertigo hit, my hearing disappeared and a great fog came between me and the rest of the world. I could continue with my life within seconds and I forgot about what had just happened – until December 2014, when vertigo made [...]
Books and magnifying glass

Are You Sure Your Meniere's Diagnosis Is the Right One?

“You are correct that Ménière’s disease is over-diagnosed. Many physicians diagnose it when they see any vertigo they do not understand.” The words of Dr. Carol Foster, Associate Professor in the department of Otolaryngology at the University of Colorado, written in an email to me this week. She has researched the condition in depth (Foster [...]
Portrait of young pretty woman outdoor in wintertime

5 Holiday Wishes From Someone With an 'Unseen' Illness

The holiday season can be a difficult time for anyone, and finding the perfect gift for those you love can be almost impossible. So to make it easier for you, here are some ideas from someone with an “unseen” illness. None of it will cost you a dime, and the results can be profound. I [...]
manipulated photograph of an ear to show what meniere's disease feels like

How I'm Using Photography to Teach Others About Meniere's Disease

Never thought I would be a photographer, never thought I would have Meniere’s. I should have realized I would someday end up being a photographer; my sister is one, my first cousin is one and my son is beginning to become one; so I guess it was my turn. Photo by Daniel Pancy My mother [...]