Is It Better To Say Nothing?

[Guest elyag]

I've been going to the same dentist for years. He knows I have health issues as does his staff although I'm sure they don't know exactly what dyasutonomia is. What they do know is it's often hard for me to keep appointments bcause I don't feel well and I end up having to cancel and reschedule a lot. And that my husband has to take me to appointments sometimes.

Anyhow, during yesterday's teeth cleaning the summer subject of summer vacation came up. As it does every year. My dentist and his family always take exotic and exciting vacations and I guess he likes to know where other folks are going. Same with his hygienist. Every year I give the same answer. No... we're not going anywhere. This year I decided to tell the truth. That because of my health we're unable to travel. The response was an uncomfortable silence. People just don't know how to respond to an answer like that. Honestly...I don't know how I'd respond either if I were in his shoes.

So I guess it's better to just give my usual answer of "no....we're not going anywhere".......rather than giving the reason for why we're not going anywhere. People really don't want to hear the truth about health problems.

[janiedelite]

I totally get this. It's sometimes much easier to just gloss over the real reasons we can't do things. Otherwise, people who don't know you just don't know what to say, or they start asking questions and you have to explain yourself, which really tires me out. I really appreciate my family and friends who take me as I am, rejoice when I can do things, and understand when I can't.

[Guest elyag]

LOL....I've even had friends and family ask about vacations. The diffrence is when I answer truthfully there's usually no uncomfortable silence.

Last year a good friend from California asked me where my husband and I liked to ski. I gently reminded her that skiing wasn't on the agenda considering I can barely make it to the store on some days.

[Maxine]

My Dad just called, they just got back from Banff, Alberta Canada. My husband sings with the Swiss singers, the group his dad used to sing with. My dad's girlfriend sings with the group, and they went to a sangerfest compitition. My husband was supposed to go. He's got a good voice, and they sadi they needed him on the trip. However, this is a big trip, high up in the mountains. Plane travel ect.

The guilt that was placed on us was not right. We told the truth, but it didn't matter. They just looked at me like it was my fault. I told my husband to go, but he didn't want to go without me. It stuns me how mean people can be. Not only did they NOT care, they just wanted another body. They obviously did not understand. there's a couple of people from the group that seems understanding, but I often wonder if their just pumping me for information, becuase they always tell me how "normal" I look.

I really don't believe anyone needs to know, but there are times you can't avoid some kind of explanation because of our limitations. Sometimes I just want to crawl inside myself and be left alone about the whole thing. Sometimes I need to wear my hard cervical collar, but I can't always wear it or I lost muscle tone, and there will be nothing to hold my head up. If I wear my collar only SOMETIMES will they wonder if it's for attention?

I'm so self conscience of my limitations now, I'm sick just discussing it here. I want to go to Ireland! Believe me, it's bad enough I can't travle like I want to, and I don't need people making me feel worse on top of that.

I totally understand your situation, and it's even worse when they act like they don't believe your not able to travel, like your over exaggerating the whole thing. Believe me, I wish this wasn't real.

Maxine :0)

Maxine :0)

[erikainorlando]

Thanks so much for your post!

I get it! It really depends for me on if i feel like dealing with their questions or reactions. Sometimes I get angry and say "of course I can't travel (bla bla bla)...still struggling with drying my hair thank you very much!". But I try to remember that most folks really can't relate to those of use who are really sick....they just can't...they don't know why a pill doesn't work for us. or we don't look sick...patience...and focusing on the blessing that some in my life do get it.

I had a friend ask the other day (when I said I had tried to do too much) if i had tried to play tennis. I looked at her as if she had lost her mind...tennis, skiing...wow...are we all on the same planet? But I gently reminded her that I can't always make it to the supermarket and the thought of tennis sends me to the ER.

Erika

[EarthMother]

Sometimes you just feel like laying it on the line! In my very non-zen example, my own Dentist's office had been calling leaving messages for a while saying that I am very overdue for an appointment. I told them that I was ill and that I knew I needed a cleaning but that I would call when I was able to schedule something and they need not continue to leave me voice mail reminders. Somehow that message didn't get through to the right person, or maybe the right brain of the person taking the message. Sure enough in a few months time I get another call ... and it was on one of my "bad" days.

I picked up the phone and said "Listen! I have a chronic illness and scheduling any appointment is very difficult for me. So yes, I know I need to come in and see the Dentist ... but I also need to schedule my pap test, mamagram, eye doctor appointment and a follow up with my primary care physician and quite frankly you are on the bottom of my list so when I get all of those done I'll give you a call!"

Not one of my better moments ;-) and truth be told this Dentist is a gem, I love him to bits and I know he'd schedule me off hours to make things easier on me if need be. But it was just one of those days and sometimes ya' just gotta lay it on the line.

There. Now I feel better.

[ramakentesh]

Maybe being a guy its harder, but I always lie about this kind of stuff. I cant come because im 'picking a friend up from thje airport who is staying the whole weekend' or lots of blaming it on 'migraines'. People get migraines - they dont get POTS...

[april abbott]

This is something I can totally relate to. And I have also used the "migraine" excuse. Why is it that some medical conditions are completely accepted and understood by society, while others leave ppl shaking their heads at us with contempt or disbelief? Honestly I'm tired of explaining futher when I say "I have a neurological disorder". Of course, that brings on a slew of questions just out of curiosity, and then I am looked at like I'm a freak, or that person no longer treats me the same again.

Some family members will never get it, and oh well.

The funny thing is that a few months ago I met the mother of my daughter's best friend for lunch one afternoon. This was our first meeting, as our third graders had been quite close in school this year, we had finally decided to meet in person. We got to talking while the kids played. Somehow the conversation turned to my health. I think I was explaining why I didn't start college until I was 26. I started to button my lips and not say a word about it, for obvious reasons, but for some reason I felt comfortable around this person. Finally, I just said "neurological disorder" and named some of my symptoms. Her eyes got large, and she asked the name of it. When I told her dysautonomia, she blurted out that she had the condition too! As it turns out, we even go to the same doctor's office, although she sees a different doctor. Needless to say, that turned out to be an interesting afternoon.