Tuesday, October 23, 2012

Sandi's secrets: How much do we tell and who know what?

I have spent decades listening to people answers questions about themselves on any number of topics.
Yes, a lot of them are famous people, folks who were there to talk to me about a new movie, a new album, a new tour or something else exciting and glamorous.
I've talked to just as many people about things that happened to them: their joys, their tragedies, their lives.
I've shared tidbits of information about my life with them too, because a good interview is also a good conversation. Information goes both ways.
Actually, all relationships we have are based on information shared. The thing is, just like the biggest celebrity you can think of, when you are sick, you should guard your privacy as jealously as they do.
Sure, our family and closest friends know the whole story about our disease -- when we got sick, the syndromes we have, how we look on our best days and worst ones.
Thinks get tricky when you add new friends, lovers and family members into the mix. How much does a friend really need to know, and when is the right time to give that  special person "the talk"?
Basic information is easy.
"I have arthritis" can cover any number of ailments that you don't want to talk about just yet. There is enough basic information out there that folks know you've got some level of pain, your bones aren't all that great and maybe that's enough for the moment.
With Fibromyalgia, you've got to get a little more personal a little faster, because when touch can hurt, new friends need to know right away.
When you're dating, man, that can get tough. That special someone has been to your house, but have they seen your collection of prescription bottles? First and most importantly, you hope your person realizes they cannot possibly catch anything auto-immune you have. If they believe they can, escort them to the door. You can do better.
When things get serious, it's time to get the tough information out. I've confessed that pain will win over pleasure every time and if I have to stop that neck massage because my hands hurt, it's stopping. Well, that and other things, but you get the picture.
He or she will have to realize there can be months at a time when you don't feel like doing much but sit on the couch wrapped in blankets, or actually sleep all weekend. You, even with a bum immune system, deserve to be just as happy as anyone who can run marathons on a regular basis, so if you find that perfect person who loves you chronic fatigue and all, keep them around, because they deserve to be happy too.
When that person becomes a family member, it's time for the big guns. They meet your doctors and they hear you have conversations with people who are asking all the questions to you, and you're sharing all your information freely, because those are the guys who can help you.
Seriously, all your friends help you, because they do listen when you start to complain, they do their best to keep your spirits up and they love you no matter what. They want to share your highs and lows and with all that help, you've got a good chance to muddle through.


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