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

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)

[selmaS]

  Well, I am disappointed...I thought for sure this thread would get some replies......hmmmm

[Mazie1209]

lmao, I just read this Selma...i am reading it on my phone, and laughing like crazy! Im sure I look funny looking at my phone laughing! sadly,i can relate to a couple of them! Thanks for posting I needed a chuckle!
Mazie :o)

[selmaS]

Well u just made my nite...I am soooooooo glad some1 enjoyed this : ) YEAH !!!!

[Mazie1209]

I did selma! I laugh everytime I read it...love it :o) (im laughing now actually)!
Mazie :o)

[selmaS]

Fantastic mazie....I am sooooooo very happy it is making me smile as well : )

[niki3350]

I love this Honey it made me smile after a very distressing meeting about me returning to work.

Where nearly all the staff said "YOU LOOK WELL"   oh so annoying, I hate this one!!!!!!!

My answer now is well make up can work wonders!!!!!!!!

[cmitchell132]

LOVE this!!!!  I've heard them all!!!! Sometimes, I just want to slap someone when they say something like this...and as they're picking themselves up from the floor (after I've knocked them down) , I want to say, You look well and it could be worse!!! :)

[classiechic]

Lmbo, I've heard them all......thanks for posting selma. Love you all and hope y'all have a great day.

[castleton]

All true.  I have had almost all of those remarks directed to me.  People just don't understand.

[NicoleEspinoza]

i got the ....you just want attention one yesterday and was like ummm why yes yes i do just want attention!!! stupid ppl **** me off

[meshell_32]

No they don't that's why the support of these boards and other support groups are invaluable.

[Sabbynal]

THank you for this. Funny, and tooo true. I was told by a hospital docotor this week that I was "Full of IT". This was two days before I saw the neurosurgeon who showed me the 7mm decent of my cerebellum. How can I be so "full" if I am working so hard at becoming empty? You are a hoot. Thank you for posting.

[hdavids]

Funny and so true :)
even my Dr´s act like this... hmmm maybe I should give him a copy of this LOL :D

Thank you for posting this :)

[selmaS]

I am soooooooooo glad u all u getting to enjoy this as much as I did....add some of ur own that may not be on the top 10 list !!!

[msloa]

I had to laugh and since I have heard some of these also.  Even though I am diagnosed with "mild chiari" it still has it's symptoms.  Of course for the remark of "It's all in your head" I had already started responding with "Yes, it is". Thank you soooooo much.  We need the humor. :-D

[adventurer53]

That was great!! Heard them all! Especially the ones about - you look so good- do they want me to look like death warmed over - I try hard not to!! I don't have chiari - at least not that I know of, but have had tethered cord from birth and all the surgeries, etc. with all of that. Now struggling with ongoing spinal fluid leak and thinking about asking my Dr. more questions about chiari - does this show up on an MRI of the brain? They are doing another one next week to see if the brain sag is worse. Can't have any other MRI because of spinal cord stimulator implant.
so great to find this group,

[NicoleEspinoza]

i had to go to the er last night bc of a speel i had and the dr did a ct and told me that i was crazy that i did not have chairi malformation i was like ummm yes sir and showed him my reports that i carry in my purse! i had a terrible migrane (migraine) and he wanted to give me a shot of benadryl for it and i refused bc that wouldnt work so then i got the...your just a drug seeker comment!!!

[*Stormy*]

Well I have something similar to number #1....but it's "are you sure that Chiari was the problem?" You don't know how many times I have been asked this...like it wasn't bad enough to begin with and I really don't think a NS would open my head if he didn't believe it was the problem!!

Also I love..."in most people, Chiari is incidental and asymptomatic"...I mean REALLY if you are doing a MRI on someone because of neurological symptoms maybe you should stop and consider maybe Chiari IS the problem. I know that I don't have a medical degree but even I could figure that one out!!

Then there's the post op comment..."all your symptoms will resolve themselves in time- go try some yoga", yes I really got that comment after seeing a NL post op.

Then there's "so you are cured now that you had the surgery"...do I even need to comment on that one?

Sorry...this is getting the brunt of my bad mood from being VERY sick right now and not happy about it :(

[selmaS]

Hi...u mentioned [brain sag]...what did ur drs mean ? and I want to let u know this could be chiari.....

And to answer u, yes, chiari should show in a brain MRI w/wo contrast...some will also do a cervical spine MRI as well. Once dx'd they may do a CINE MRI of the brain w.wo contrast to see if there is an obstruction...

"selma"

[LisaM46]

Thanks for sharing the Top 10 Selma!  My husband knows, the better I look, the worse I feel because I'm trying to - NOT HAVE TO talk about it to people who just can't understand.  When people ask how I'm doing, I just tell them "I'm OK."  and hope they will leave it at that.  (Unless they're really good friends of mine, who I know will understand anyway.)

Lately, I've been adding  that I'm not 100%, but I feel a lot better than I did this time last year (I'm 5 months post-op).

Lisa

[selmaS]

  I am so glad so many r enjoying this thread.....I got to the point I was soooooo tired hearing but u look great, I stopped wearing makeup...I wanted to look as bad as I felt...but then the  next thing was  that I couldn't look good with make up...lol......and those neigh sayers had no idea what to say then, my question...was, was  the joke on them.,.....? hmmmmmmmmm

[*Stormy*]

The makeup comment is so true b/c I went to see my GP without any on and got way more sympathy then before!! I didn't realize I looked so bad!! For a long time I tried to look good b/c that seemed to be the only thing I had power over anymore...if I walk funny at least I look ok!! But like Selma said...now I just can't seem to get rid of the bags under my eyes or the paleness :(
I really can't stand how people try to insist you are ok b/c you look fine on the outside!!!

[lydelia]

I am a guest this forum and I found your list on top hilarious!!! The neurologist I went to see even had some of the same attitudes, especially the one that was added that said 'chiari is usually incidental and asymptomatic'. His words were 'I don't think this should be causing the symptoms you are having'. I am new to this thing and it makes me feel to good to know that I am not the only one who feels like this.

[trebmal2]

WOW!!!!!  It's as if you crawled up inside my head and pulled these 10 things out.  ALL OF THE 10 have been said to me and I wanted to scream.  Instead, I was polite and screaming on the inside.  AS USUAL, THANK YOU FOR THIS!!

[Aubs1990]

hahah wow I have been getting all of these! Especially the "you look good" or "you seem fine" well yeah thanks... But I'm not.

[lisaob1]

how do i as a parent with a child with special needs and syringomyelia and a muscle disease and dont know which is affecting her worse relate to the top ten things NOT to say. she is only 16 and been diagnosed for almost 4 years.

im sick of hearing..keep an eye on her..
any change let us know.
its so rare we have no answers.
we will see you in another six months.

[*Stormy*]

If we didn't live so far away...I would be truly convinced that we have seen the same neurologist!!

[selmaS]

I know what u mean, I was told if I became symptomatic to call the Drs...duh what?.....sometimes things r said that just do not make sense..and this list is just 10 dumb things...I encourage u to add to the list.....

  Keep an eye on her...and then what?....goodness they really do not have a clue.

And I also understand having a few diff conditions myself (nothing like ur DD) I never knew which symptoms were from which condition...it can be very frustrating.

  "selma"

[lu7997]

Oh.  1 missing that I personally love. "it's a headache everyone gets them".   Ummmmm.  It is not. Headache.  Would u call a heart attack just chest pain?    


I love this Selma.    It is so horrible how we are crowed not just from people w don't know but the medical community an even some family members

thanks for sharing

[STL5]

Last night my area was hit by a tornado and they would not allow anyone to drive me to my house which was open and I was unable to get a hold of my son so after telling the police officer that I I had brain surgery two weeks ago he told me that I had to walk.  After watching me stumble down the street he yelled at me "should yoiu really be walking".  I told him that He didn't really give me any choice.  A mile later I made it home with the help of others walking.  Boy am I paying for it today.  Just a side note note on the insensitive side we all encounter.

[selmaS]

WOW I am so sorry u had to go thru that...is ur son and home ok?

I can not believe the insensitive people and they r in the service industry.....ugh.

  "selma"

[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

[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 )

[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.

[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 :)

[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!!!

[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.

[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."

[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 :)  

[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.

[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

[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!

[Samanthab259]

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

[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,,,

[*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

[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.  

[selmaS]

  

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

[*Stormy*]

ME too!!  :)

[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

[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

[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

[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.

[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 :-)

[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!!!

[drewlevas]

Love this list I will print it!