Meniere

When I was 14, I started to lose my balance a lot. I’d had a history of ear and dizziness problems, but falling was new. At first, we thought maybe it was a growth spurt – you know, tripping over my ever growing feet.

But one day, I fell and nearly broke a bone. Yikes! So, I ended up with a referral to the UCLA Research Hospital, where I met with a specialist who ultimately diagnosed me with meniere disease (the testing for that, by the way, is truly a crappy experience).

I was (and maybe still am?) one of the youngest people to receive the diagnosis because it’s an extremely technical diagnosis to make, and usually doesn’t produce symptoms until people have reached their twenties. In fact, about 1.8% of people who think they have meniere disease are self or misdiagnosed. Only .02% of the population has it.

It’s not something I feel is a true struggle (currently), although it can be annoying. Meniere Disease is an inner ear disorder that causes episodes of vertigo (sometimes very severe, followed by nausea and vomiting) as well as fluctuating hearing loss, with progressive and permanent hearing loss, tinnitus, and fullness in the ear.

It usually only affects one ear. In my case, it’s the left ear. But, within the next 15 years it’s expected to eventually spread to my right ear.

It’s one of those “silent” afflictions that plagues roughly 615,000 people in the US. But when it strikes, it’s brutal. I’m lucky in that I tend to experience it “constantly” in that I’m basically always slightly dizzy and off balance. I rarely get a large episode that keeps me down for a whole day. In fact, that has only happened to me twice in 14 years. For others, it’s so severe they collect disability.

I’m talking about this because I think it’s important to share experiences. It’s important to remember that we all have “our thing” we are dealing with, whether it be on a daily basis or not. It’s important to remember that some illnesses are invisible, and to be kind to people because we never know what is going on under their otherwise healthy looking skin-surface.