I went to my birthday party given by friends and relatives and heard the weirdest crap which is so indicative of the misunderstanding of this disease. I just didn't respond or correct. Maybe being a hermit/recluse isn't a bad option. Here are some of the conversations I had: 1. "Are you doing OK Jimmy, now I have had that vertigo as well, and a little shot of vodka usually cures it." 2. "I heard you are having some mental issues with your ears. Have you gotten treatment?" 3. "So you don't eat salt, but do you mind if I put just a little on this salmon?" 4. "Perhaps you should get hearing aids." (I was wearing them) 5. "I don't know how I could live hearing what you hear." 6. "If you went vegan, I bet you would be cured in three months." 7. "I heard that tinnitus just involves getting used to it, you know once your mind adjusts. Why are you having so much trouble adjusting?" 8. "You shouldn't let this illness disrupt who you are--we want the old funny Jimmy back!" 9. "Yes I can tell something is wrong just looking at your eyes. They seem a little misaligned." 10. "Oh Jimmy I have a doctor that can adjust your ear crystals and you will be like new!" 11. "I don't think I hear ever heard of manure's disease."
I'm so sorry you had to hear all that. I went out tonight for the first time in awhile, and someone I hadn't seen in a year asked how I'd been. I mentioned vertigo, and she asked me if it was menieres. I told her it was and she totally got what it was and the impact it can have. It was so refreshing. Like SO refreshing to have someone understand without any explanation.
I logged on to Facebook the other day and saw two good friends (who I introduced) out at a festival having a good time! I was irritated that they didn't even invite me and depressed that I wouldn't have gone even if they had! It was just a sad reminder of the life AND friends that I no longer have, which of course depressed me even more
Thank you for the post jimmy, as Yellow said - you sure brightened up an otherwise gloomy day with the last one. Hopefully some day none of us will suffer any more.
Some of the questions I got were funny, but some hurt. Overall, I am getting the impression that many people think that tinnitus, vertigo, and even Menieres is really not that significant and can be dealt with, and if you can't--there is something wrong with you. They don't understand the severity of what we are going through at all. I think my best reaction came when I talked to a former friend from work about a vertigo incident in the middle of the night. She asked me "was the room spinning a little?" And then she proceeded to tell me that tinnitus is not real, it is something the brain "creates." I told her what I felt that night of my vertigo incident--that I wanted to die because the damn room was not spinning but tumbling upside down for almost two hours. I told her that I had to crawl to the toilet and I threw up so violently that the vomit hit the water and bounced in my face. I told her the "imaginary sounds in my head that night were so loud it sounded like two dental drills working on me. I told her that once someone dropped silverware in a restaurant and I peed on myself. I concluded by telling her that on some days I don't know who I am and in a complete brain fog and that people sound like monsters on a bad science fiction movie and it drives me insane and the only thing keeping me sane is Zoloft and Xanax. She seemed shocked and walked away from me pretty quickly. I think that is why I now get a lot of questions about my mental state.
Us humans say stupid stuff on a regular basis. Often, there is no evil intent, just ignorant. Some of your list made me LMAO. I live on a homestead. Next time I step in a pile, I'll think how my Menieres has Manures to keep it company.
Jimmy, I can relate. This is why I don't like meeting new people or running into people I haven't seen for a while, or going to parties. I either get pity, unsolicited "medical" advise, or (recently) unwanted counseling on seeking disability payments. Then there is the dismissal or scorn from those who doubt the seriousness of my condition. Not fun. Isolation is supposed to be bad for one's health, but what about the trauma of the negative social interactions? But, your last one about "manure's disease" did make me laugh out loud and I thank you for that.
Scott Tom: You 'hit it on the head'! Because most of us 'look ok' on the outside--folks have no idea what is going on 'inside'! So, if you think they truly 'want to know'--give them a 'short version---of Meniere's and it's quality of life altering affect! If they are just being polite and have to say something--best to say, 'I'm just a 'dizzy dame'--and it doesn't show or you couldn't stand to look at me--and then give a smile or laugh. Some will follow with true concern--others probably not.
Everyone I know has been really sympathetic. Both friends, family and strangers. I've been at a get together with friends and family like the original poster mentioned. I got similar comments. I didn't mind. It was just people's way of handling the tension. They make light of it, but not in bad way. You gotta roll with it. I'd rather we all chuckled a bit about it, and the ridiculous "remedies", than everyone treat it with stilted solemnity. People are just people.
Sorry Jimmy. I say as little as possible and discuss medication with very few people. Call me oversensitive but i like to avoid unhelpful feedback.