What It’s Like Living With Meniere’s Disease

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Bruno van der Kraan / Unsplash

When I was 21 I went to a huge party and came away with a severe case of mono. After thinking it was just strep for a couple weeks we finally ended up at the emergency room after my throat was so swollen that I couldn’t breathe. I was in the hospital for a week after that and was constantly on painkillers, benadryl, steroids, everything else that you can imagine they would give someone with a throat that swollen.

Immediately after that, I had a tonsillectomy and soon after that, I noticed a constant ringing in my ears. I’d had ringing in my ears before so I was operating under the assumption that it would just go away. I was operating under the assumption that I would be perfectly fine and that things would stop and I’d feel better.

We went to the ENT finally and he took a look at my throat and said everything was healing properly. When we brought up the constant ear ringing it became a different story. He said I was no longer a throat patient and he had to take a look at my ears. I came away with a diagnosis of Meniere’s Disease.

For those that don’t know, Meniere’s Disease is; it’s an inner ear disorder. It causes vertigo (a spinning sensation), hearing loss, ear ringing, and ear pressure. All of these things can lead to other symptoms, of course. The hearing loss and ringing can be permanent.

I’d never even heard of Meniere’s Disease before then. It makes it hard for me to do anything some days. The world starts spinning, I’ll get major headaches just trying to get through the day. I won’t get my work done because I’ll get a migraine from trying to push through the constantly spinning world. It causes so much frustration and it leads into my depression.

I can’t handle things when the world is spinning all the time and when I don’t get work done I feel pathetic. I feel like I’m a failure if I can’t accomplish something. There are days, though, where it’s physically impossible for me to accomplish anything. On those days I’m lucky if I get out of bed. I’m lucky if I change my clothes, let alone shower. In part with the depression but the depression caused by the world constantly fucking spinning, spinning, spinning.

I get angry at myself, I get angry at others. I get angry that other people aren’t putting up with this and that they don’t understand. I get angry that there’s not really a way that I can “cure” this stupid disease. It’s chronic. It can be lifelong. I feel like that’s my future. I’m going to be suffering with this for the rest of my life.

On one note, it triggers depression. On another note, I know that I’m a fighter. I’m going to push through it all and I’m going to keep going. I would never let a disability ruin my entire life. I wouldn’t let a disability take complete control over me. I wouldn’t let a disability completely ruin me. I feel like I have, to an extent though.

There are days and nights where I’ll stay in because I can’t handle the spinning or the ringing. I might be able to handle it better if it weren’t constantly for that god damned ringing. I might be able to handle it better if the ringing would just fucking stop. If it would go away. Anything to make the ringing go away. It’s almost like hearing a voice in your head, but instead of a voice, it’s just this constant, high pitched ring.

People never seem to understand. I’ll explain that I’m having issues with my Meniere’s disease. I’ll explain that I’m struggling to push through and that I’m doing the very best that I can do to make it better and make it so that I can do what I need to get done. I can list off the symptoms, and people understand those a lot better than they understand when I say, “My Meniere’s disease is acting up today.”

If I were to put it that way, then they wouldn’t understand it at all. I would get told to get over it. I hate that. I hate that people don’t understand what it’s like dealing with a chronic illness. It’s almost like a “people don’t understand me” joke, but they don’t seem to understand that I do have this illness, and it causes so many issues for me. It causes me to struggle, it causes me to have to fight and force my way through work, through social situations, through life a lot of the time.

The depression can kick in and people blame that on something else. They’ll always ask me what’s wrong, what’s going on or why I’m depressed. I hate that question. I hate that I can’t actually explain the struggles without people assuming that I should be used to it by now. They just assume that I should be used to having these issues, or that I should be used to having Meniere’s disease.

I’m used to having it but that doesn’t make it any better. I’m used to having it but that doesn’t make it go away. I’m used to having it but that doesn’t change that I don’t know how to fix anything going on with it. I don’t know how to change anything. I’m trying my hardest.

I’ll always try my hardest, because no matter what disability you have it’s horrible. With mine I’ve decided to take it into my own hands. I’m going to keep pushing. I’m going to make myself into what I need to be. I’m going to keep going and I’m going to make it. I’m going to make it. I’m a fighter, and I’m going to make it through this. TC mark

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