The Part of Meniere's Disease That's Hard to Talk About

Sometimes I can’t bring myself to talk, to let myself talk to anyone. I’ll struggle with hearing anything they’re saying so I’ll mentally shut down. I won’t let myself go through the embarrassment of having to ask people to repeat themselves. I know how frustrating it is to have to repeat myself and I don’t want to do that to someone else, so I won’t let myself get in that position.

I feel ashamed of having Meniere’s disease sometimes. I know it sounds silly — it’s just a hearing impairment. It’s something most people don’t think of as a big deal. People are usually more understanding when they know what’s going on, and they’ll be more open to repeating themselves and making sure they speak in a way that I can hear and understand them. Texting helps a lot as well. I can read what the point is and make sure I get things done.

Sometimes I can’t bring myself to talk about the fact that I can’t hear someone. I hate admitting I can’t talk to them that day or that I can’t get the work done because I can’t function. I hate admitting that it’s something that isn’t going to just go away. I’m not just going to feel “better” the next day. Some days I’m going to feel great, and other days I’m going to feel miserable.

It’s a disability. It literally disables me from acting the way I’m “supposed to.” I’m supposed to be this perky, cheerful person handling everyone’s lives and making sure they look good, feel good and know they can count on me. There are days when it doesn’t feel like I can even get myself out of bed.

The hardest part is talking about it with my friends. I want understanding, not pity. I don’t want them to feel like they need to baby me. I don’t want to be babied. When people find out I have a disability, they treat me differently and I find it embarrassing. Then I feel like I should hide from others.

I look “normal.” If people didn’t know I had a disability, they probably wouldn’t guess. They would probably just assume I didn’t pay attention or wasn’t a good listener. The problem is my hearing — the constant ringing and screeching in my ears. It drives migraines and it drives me to a point that I feel like I can’t take it.

When people find out about my disability, I tend to run away. I don’t want to be the person people have to baby. I don’t want to be the person people have to look at and know they have to talk to me differently, treat me differently. My anxiety will rear up and I’ll run away faster than I got there.

It’s always hard to talk about because people turn it into a pity game. I don’t want that. I’ve never wanted the pity. I only want people to understand what Meniere’s disease is and how they can help.