I had never heard of Meniere's disease before I found out I have it, so it wasn't really realistic for me to expect others to know what was going on with me. When I started telling people I have MD, the most common replies were:
"Okayyy..?"
"What's that?"
"Neverheard"
"A what disease?"
"Ooh, what a cool name!"
"Okayyy..?"
"What's that?"
"Neverheard"
"A what disease?"
"Ooh, what a cool name!"
Yep. My chronic illness does have a cool name, I do agree.
It's sad how Meniere's is so little known. My friends were interested in learning about it, but since my disease is pretty well under control and it doesn't have a direct affect on anyone besides myself, they tend to forget about it. They'll ask things like:
"What was the name of that condition you have, again?"
"You had some ear thing, right?"
"Are your ears all better now?"
I don't take it personally if someone I know forgets the name of my disease or if someone remembers the name but doesn't remember what it actually is and does. For majority of the last five years even I sort of ignored the existence of Meniere's disease even though it's something that was gradually taking my hearing away. But, as an answer to the questions: Yes, I have an ear thing, and no, my ears are not all better now, but it's ok. I'm ok :)
If you're a friend of mine, or if you're someone who knows someone with Meniere's disease, perhaps a friend or a family member, do them a favor and find out what Meniere's disease is. It's in desperate need of visibility and research funding. If you need proof, just look at the picture below, posted on Facebook by Meniere's Awareness Project:
To put this in perspective, the funding for migraine research is currently $20 million, and for MS $98 million.
Yep... this disease sure has a cool name...
It's sad how Meniere's is so little known. My friends were interested in learning about it, but since my disease is pretty well under control and it doesn't have a direct affect on anyone besides myself, they tend to forget about it. They'll ask things like:
"What was the name of that condition you have, again?"
"You had some ear thing, right?"
"Are your ears all better now?"
I don't take it personally if someone I know forgets the name of my disease or if someone remembers the name but doesn't remember what it actually is and does. For majority of the last five years even I sort of ignored the existence of Meniere's disease even though it's something that was gradually taking my hearing away. But, as an answer to the questions: Yes, I have an ear thing, and no, my ears are not all better now, but it's ok. I'm ok :)
If you're a friend of mine, or if you're someone who knows someone with Meniere's disease, perhaps a friend or a family member, do them a favor and find out what Meniere's disease is. It's in desperate need of visibility and research funding. If you need proof, just look at the picture below, posted on Facebook by Meniere's Awareness Project:
To put this in perspective, the funding for migraine research is currently $20 million, and for MS $98 million.
Yep... this disease sure has a cool name...
Yes. Funding and research is needed. Even though Meniere's isn't a visible disease or so, it really affects on the person's life and the quality of it. It's good that you write this blog and there are others who give insight of Meniere's.
ReplyDeleteFor a long time I thought that everybody was familiar with type 1 diabetes and that it is simple to understand even for people who don't even have an acquaintance who's suffering from it. Now even in Finland there's people who offer miracle cures for it (there are none for type 1), think that you get diabetes for eating sugar and that if a person has low blood sugar, you have to take insulin. Nowadays I think every disease needs even a little bit of funding and awareness. For me it's irritating when people don't know the facts. :D
Yep! Not knowing the facts can even be dangerous if a person knows someone with type 1 diabetes, because they won't be able to help if something happens.
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