10 things NOT to say to some1 with Chiari or Syringomyelia or related conditions for that matter....

[selmaS]

TEN THINGS YOU DO NOT SAY TO SOMEONE WITH CHIARI / SYRINGOMYELIA!

This was borrowed by Teresa Petersen on Wednesday, 09 March 2011 at 15:49 from Face book after B.Brookes posted it in Karens chiari friends.....I had to share with u all and hope u add to the list : )


10. MUST BE NICE 2 SLEEP ALL DAY.... (I never sleep, I'm in too much pain)

9. YOU'RE LUCKY U DON'T HAVE 2 WORK.... (I'd love to work again, a-hole)

8. I CAN RELATE..... (no, no, no you can't relate, call me when you have had your entire backside cracked open like a lobster)

7. JUST TAKE SOMETHING.... (what else could I possibly take? I'm on every medication known to mankind)

6. JUST TRY HARDER.... (to do what?)

5. JUST BE POSITIVE.... (this IS me being POSITIVE)

4. U JUST WANT ATTENTION..... (that's right, I had 7 hours of neuro surgery, and 12 other surgeries, JUST for ATTENTION)

3. IT'S ALL IN UR HEAD..... (duh, yes it IS!)

2. IT COULD BE WORSE..... (it IS worse)

1. BUT U LOOK GOOD, are you sure they diagnosed you correctly?......... (just walk away)

[Samanthab259]

The comment i get alot is WOW are you sure you had brain surgery?? Um duh look at my head!

[zygy2]

Yeah, "you look good"  is really annoying!  At least some people care enough to say something :)  I like the strange looks when I stand there looking at something I dropped :)  I always have that stupid feeling while I take the time to think about bending over to get something and giving myself a headache :)  We need a hat that changes colors based on pain level :) Wouldn't that help LOL... kind of like a warning system!

[kricklekrin]

If Chiari has taught me anything, it has taught me to appreciate being healthy or healthier than some.  I'm have become more aware of others who are dealing with invisible conditions and have sympathy for what they may be going through in silence.  

We often believe others, including doctors are not listening, but "maybe" they are.  We expect miracles sometimes, and those only come from God.  

I'm not sure if Chiari is a "gift", but we can take our experience and use it in a positive way.

Venting may or may not be productive, but I truly believe that Chiarians are some of the most compassionate people I've met or conversed with.  The daily roller coaster ride and pain some of us endure is very humbling.  

So, after the venting and funny talk...............we are reminded that it is hard for someone to see what we are going through unless they walk in our shoes.  Sometimes, we don't want to burden others with our complaints and expect them to read our minds.  IF YOU SHARE - THEY WILL CARE.  

With this said, I pray all of you have a blessed week and weekend.  May you find the answers your looking for and the healing you deserve.  Thank you all for the support and encouragement!

Kristel

[mrspea]

I sometimes wish I can wear the list sandwich board style. As I'm still working full time as an office mgr who sits in reception, i try to put myself together ie. make-up, hair, clothing, etc. Some times it does make me feel a little better, mentally speaking. When I'm asked how i'm feeling, i don't try to tell the story, just kind of shrug and say "it is what it is for now" or I'll know more after I see my NS". No matter what I say tho, I get "well you look good!" I'm told they mean that in a positive way but I can't help but get angry for a minute ... I respond w/it's all smoke and mirrors and remind myself they mean well.

[zygy2]

I am sure everyone can relate so some of these, the important thing to remember for all of us is that you can't always see someone's pain!  Just as we want our Doctors to listen and care that is the way everyone should be!  It is so easy to judge someone that looks young and healthy... Chiri doesn't have anything that you can see and that just makes it hard for people to understand! Sadly there are lots of people with issues we can't see!  Maybe our Chiari will make us better listeners and less quickly to judge someone and from that we actually get a gift from our Chiari :)  

[redkim]

The first NS I saw said the surgery was easy and I wasn't going to die from Chiari, but my cyst "that could kill you."