Meniere's Disease Support Group
Meniere's disease is a balance disorder of the inner ear. The symptoms of Meniere's are variable; not all sufferers experience the same symptoms. However, "classic Meniere's" is considered to comprise the following four symptoms: Periodic episodes of rotary vertigo, hearing loss, tinnitus, and a sensation of fullness or pressure in one or both ears.
Just curious how others explain their Meniere's Disease to their family and friends. I don't like talking about it and am a little embarrased to tell people I am on short-term disability (again, 3rd time now and my work is telling me not to bother trying to come back since they want to replace me, it's just been causing me to miss too much work).
Different people have different reactions to when I try to explain and I find it hards to make them understand, and I don't want to come across as complaining a lot or looking for pity so I downplay the severity sometimes. My in-laws keep making comments that it will go away and I'll be fine, they just seem to think I just have an ear infection or something even though I've explained it to them. A friend of mine has another friend with Meniere's and he's not experiencing any symptoms so she keeps making comments that he's fine so she doesn't see why I'm so sick. I don't know how I could ever even tell my brother I have a diagnosis, he's made some very hurtful comments that "everyone gets dizzy sometime" and I'm just being a baby / faking / being lazy / "handling it poorly" because "he goes to work when he's sick and doesn't complain". My mother gave him s*** for saying that stuff because she knows I'm really sick, but he refused to believe or listen and kept going on about how "it's all in my head", etc. (I actually had to leave my mother's house because I was in tears at that point). I think his comments are a big part of the reason I'm hesitant to discuss it with other people. I hate the fact that I'm off work, although at the same time part of me is very relieved since many days were very hard to get through, and I was calling in sick very frequently. It's getting to the point where I am isolating myself at home, even on my good days I don't want to go out or see anybody because I worry they will think "Oh, she looks fine, she shouldn't be off work"(meanwhile I spent the last several days sleeping on a yoga mat on my bathroom floor vomiting.)
Any advice would be appreciated. I feel like this is starting to affect my mental health.
Different people have different reactions to when I try to explain and I find it hards to make them understand, and I don't want to come across as complaining a lot or looking for pity so I downplay the severity sometimes. My in-laws keep making comments that it will go away and I'll be fine, they just seem to think I just have an ear infection or something even though I've explained it to them. A friend of mine has another friend with Meniere's and he's not experiencing any symptoms so she keeps making comments that he's fine so she doesn't see why I'm so sick. I don't know how I could ever even tell my brother I have a diagnosis, he's made some very hurtful comments that "everyone gets dizzy sometime" and I'm just being a baby / faking / being lazy / "handling it poorly" because "he goes to work when he's sick and doesn't complain". My mother gave him s*** for saying that stuff because she knows I'm really sick, but he refused to believe or listen and kept going on about how "it's all in my head", etc. (I actually had to leave my mother's house because I was in tears at that point). I think his comments are a big part of the reason I'm hesitant to discuss it with other people. I hate the fact that I'm off work, although at the same time part of me is very relieved since many days were very hard to get through, and I was calling in sick very frequently. It's getting to the point where I am isolating myself at home, even on my good days I don't want to go out or see anybody because I worry they will think "Oh, she looks fine, she shouldn't be off work"(meanwhile I spent the last several days sleeping on a yoga mat on my bathroom floor vomiting.)
Any advice would be appreciated. I feel like this is starting to affect my mental health.
For me the only people who understand this illness are those who have witnessed my full out rotational vertigo (and vomiting) its then they realize the severity of what we are dealing with. The emotional toll of always feeling 'off'' dizzy or sick and overwhelmed with fear of when the next attack will occur robs us of life experiences others take for granted.
The nicest doctor I have met since having Menieres said to me "I know if you had a big whole in your head and it was bleeding people would certainly know how sick you feel". However with Menieres people think you look normal (on good days) and say things like "Well you look so good" like its impossible to look intact on the outside while being ill and fearful on the inside. Please know anyone with this blight would feel as you do. Be well and keep trying!
You are so right about people not understanding. I think I also avoid talking about mine because people do not understand. I think I would be the same way. When someone else talks to me about something, I think of ways that I can relate to what they are saying. (That's Piaget in the educational realm) That is how we understand. Unfortunately, other people can't relate if they don't understand the depths of this disease. Someone on this site once compared the vertigo to going on a tilt-a-whirl when you are totally drunk. That might come close. Another thing with MD is that people don't understand the daily struggles we face even when we are having a good day. So, in their positive comments, we are misunderstood and often hurt. I have come to not explain myself unless I feel that someone is truly listening. I've noticed that the same people will often google and learn more on their own. So, come here to talk to people who truly understand. And take your family's comments in stride. They do not live inside your head. The most likely do care deeply about you. They just feel helpless.
God's blessings.
I do get tired of explaining things or hearing people say I look fine. Boy is that frustrating! I haven't definitely "numbed" it down for my co-workers for fear of scaring them. I don't want them to think that I can't do my job. I live alone, my family is out of state and have to support myself. It's definitely not easy, but we do our best, don't we??? I can certainly understand why we end up feeling anxious and depressed.
I am very thankful for this group. Everyone's help, advice, thoughts and input is wonderful!!!!! Have a dizzy-free day!
depending on the person and if they are really interested in knowing more about it, I send them a quick link with some info. Or I explain what it is, symptoms, but then what I experience since each person is different. I also don't like talking about it and DON'T want it to be the topic of every conversation or every time I see someone be all we talk about!!!!
Hope that helps. :)