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)

[drewlevas]

Love this list I will print it!

[drewlevas]

Just yesterday at my DDs and DH tea kwon do class one of the instructor made me a remarque that I should join and lose some weight. When I told him that I coudn't because of a Chiari Malformation. He asked if it was the heart and when I said no and try to explain more he scuffed and said that it's all in my head! NO S***! So I answered yes exactly and a NS will eventualy open the back of my head ant that it's not a jokes he looked at my with an openned mouth and moved away to go ask my DH. So my DH told him to get lost!!!

[mizzariel314]

Lol me and my mama laughed at this she was agreeing most of the time some she couldnt even say nothing 2 cuz it is so true # good job on this one :-)

[Autumn55]

Thanks for this!  
I'm new to all this but when I speak to people about having certain problems related to my syrinx they just give me the look, as if to say "you're so faking it, you just want to get out of work"

I hate that.  I wold love to be able to work like I used to... I used to love my job, which is a very physical one.  But I have been stuck in a office for a few years now because of my pain.

[selmaS]

  11. you don't listen to what I say......

  Ummmm, yes I do, I have chiari and focusing when a TV is on or others r talking is diff, so if I ask u  to repeat urself it is bcuse I just was not able to catch it all and it didn't make sense.

I just hate some one telling me I am purposely not listening to them....can they try to be sure the situation is ok for me to understand????I have told them this problem b4, mayb it is them that r not listening to me?????hmmmmmmmmm

[selmaS]

  Well Hellooooooooo stranger how the heck are u??? Glad to see u r still around ....and I have a ?...so, it's not all in my head????? LMAO


I just had to...sorry...but it is good to see u again...hope u stick around for a bit : )


  SIS

[ChiariWolf]

#3, #7 and #8 all deserve a good hard smack upside the reality check of such a person!!! Not that the others are any better but those are my personal pet peives. But then again I remind myself it's really a good thing that those close enough to me to make those comments don't understand as that would mean they had CM.

I also hate "Oh yes, I've had neck problems for years." Usually followed by "I just take blah blah blah and it makes thing bearable for me" .... walk away and take a deep breath then change the subject.

CW

[*Stormy*]

ME too!!  :)

[selmaS]

  

  Looking forward to seeing that Roy......

[Roy902]

I am currently complying a list of say the TOP TEN for things that are said
by docs at the ER & a list of the top ten by the Receptionists at the ER DESK when they ask what brings you to the ER today / tonight.  You know the   drill they look up at you and give you the deer in the head light look.  

[*Stormy*]

That's what I do a lot of times too... I am stubborn and will do things despite how I feel and on the good days I try to tell myself that maybe I am just being a wimp. But then the bad days come and I can barely function and I change my mind again and realize that I really am suffering. It's funny how our minds will go back and forth like that... It's also hard for ppl close to me to understand how difficult it is for me b/c I always put a good face on and I this point I find complaining about the pain is pointless. That's why it's great here b/c you DO find ppl who understand..glad to have you join us:)

Stormy

[pixiedust77]

new to this sharing online but reading all this makes me feel a little normal..I am not okay but will look and act like it and some times i even convince myself but really  i am just learning to live feeling this way,, so glad to have read yalls post,,,

[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."

[redkim]

The last NL I saw said "Chiari is an incidnetal finding and doesn't cause symptoms" I said, tell that to all the people who have it.  I told him I had surgery and he spent a good 10 minutes asking me questions about the surgery.  I think I was the first patient he saw who had the surgery.  He couldn't believe it. Lol.

[Stephiec79]

love the headache comment! I LOVE when people say, "I know how you feel! I get headaches, too! Take some extra strength tylenol" HA!!!

[kricklekrin]

I get this comment a lot...

You can't let Chiari control your life.

OK - today it feels like an arrow missed it's intended target and is stuck in the back of my head/neck, and my brain burns, kind of like acid has been pored over it.  I won't bore you with the rest of the symptoms, but sure I'll come to the party and pretend for your sake.  Maybe if I stumble or vomit from the vertigo, everyone will just think I had too much to drink.  Hopefully I won't offend anyone who "tries" to carry on a conversation with me.  

Oh, the things we do!

Chiari can be controlling, but I work very hard at winning.

Thanks for the laugh Selma :)

[Braintoobig]

If I could add to the list:

"Oh I get headaches too. Maybe I should get checked for that."
-uh no, you'd know if you had this. There's no describing the pain.

"At least it's not cancer."
-This one really REALLY makes me angry.

[marcel24]

No sure if this helps anyone or not, but here a site that we came across.  http://www.clinicaltrials.gov/ct2/results?term=chiari+1+malformation (www.clinicaltrials.gov )

[lisaob1]

i dont even know where to begin?silly question but are you ok? is your son ok? i feel quite humble,i cant begin to imagine what your going through