Does “you really don’t look like anything is wrong with you,” just hit you the wrong way? It does me. We smile and act like we are fine, but on the inside we are in so much pain, and try to hide from others. Does that statement fit you?
ohhh abby how right that is,
my husband says it all the time, but have a cold sore he then says im under the weather, hahahah you can see that but chiari you cant,
my parents also say to me why do you need help, you can go into town and do things fine, well i go into town only when i feel well enough, i stay on the couch or bed when i dont, but of course they dont see that, because they dont visit (yet they live 2 streets away) also i never get a phone call even ti ask if im ok,
im sorry it makes me angry that they are like that,
i went to have a cyst taken out of my spinal cord, major surgery, and my mother didnt bother to ring or pop over, she txt my husband and said i hope someone lets me know how it goes, my husband said no ill let nana know, well my mother finally at 10pm the night before the surgery txt me and said good luck, i was so upsett, that i wanted juat to die on the table to show her how wrong she is, and to make her feel guilty, lol but that didnt happen, even though i didnt care if i died or not, in my funny way i was welcoming it, i felt really bad then.
sorry i had to moan, i get so angry with my family, but im expected to be there for them, and when i need it they said that that is what my husband is for, when you married him, it took the responsiblity from us, your not our problem anymore, then i cried for days, there i go again, moaning about it, lol
it feels good though
hi abby
oh girl my heart goes out to you too, when i feel my worse i come on my support sites to get support,
it makes me feel atleast one place that care and understands
thankyou abby
sometimes alittle understanding goes a long way,
plus your able to moan, get angry, anything that you feel, you have no judgement,
unsure on how things are changing your able to put it down, and out there
.
im here, for anyone who wants it, needs it, just for someone to listen take the scaryness out of it, get love and support,
sorry just had to add that in, just went in my head and had to type it out
Yes that statement hits home completely. People misjudge the way you feel cause you don’t look miserable enough to be hurting. I get that vibe a lot. I am a happy person and just because I’m feeling horrible doesn’t mean I can’t count my blessings. Nobody wants to be in pain and the truth is there are a lot of people who misjudge pain as not being able to move a limb. Pain come in different varieties and people deal with them in different ways. Some choose to be bitter and look miserable while others try to be positive and stay strong. The best way to deal with people who say you don’t look sick is to not talk about it around them. They aren’t going to understand and it’s not your job to prove to them that you are ill or in pain.
Hi…
Another great topic here!!! I love it when you get…“But , you look SO GOOD”…what the heck does that mean??? Lets be real…I never looked good, EVER!! LOL…I ususally get this when i try to explain my condition and why I am not currently working…like i must justify myself…i know…that is my problem and I shouldn’t feel compelled to have to tell the world…“Hey…There is something MAJOR wrong with me…thats why I don’t have a job right now”…
“BUT YOU LOOK SOOOOOOOOOOOOO GOOOOOOOOOOOOOOD!!!”…I could SCREAM!!!
THANK YOU ABBY!!!
i got told that the other day, and nearly screamed, my EX MOTHER IN LAW said it, in front of my parents, and then she added " I know you have alot of problems but you look really good", I SAID THAT THE PROBLEM, PEOPLE THINK THAT EVERYTHING IS GREAT BUT INSIDE IM SHUTTING DOWN". i had to say that because my parents were there, and wanted to put it in there face, lol
people do have an opinion, and normally they are judging on what they dont know,
Hey everyone!
I relly do hate it when people say stuff like this 'Oh but you look ok blah blah blah’
One friend actually said ‘Are you sure that your not making all this up and the doctors are just feeding your head with informationm because you look ok to me’ Well lets say that it was lucky she said this over the phone.
I do just take it on the chin now and let people think what they think, they will never know what goes on inside, just because we don’t look like we are half way to dead doesn’t mean we are fine. If they can’t see the pain in our eye’s that’s their own ignorance and misunderstanding. They choose to ignore what their friends/family member is going through. You just have to ignore it. You know what you are going through is real and not made up.
I mean if you were all mad in the head and it was all made up then all of us are just as mad 
lol!!
Let people live their own lives in their own little bubble. And when something shit happens to them just remember the day they choose to turn their backs on you. I do. And even though I couldn’t imagine turning my back on a friend I will never forgive the ones who have on me… arhhh am going on hahah!!
Peace people
:Lexi xxx
Hi Lexi:
You poor thing…a ‘friend’ actually saying that crap to you…YES…THANK GOD it was on the phone!!LOL…I think we all find out who our REAL friends are when we go through medical issues such as Chiari…life long …in many cases…
As Abby said…even people who have had the surgery still have symptoms and sometimes even differnet Sx’s than b4 the operation…I had the operation 8/08 and have seen improvement…HOWEVER, there are still Sx’s and some have changed in nature…people who don’t understand Chiari…‘don’t get it’…
We are here for you Lexi!!!
Oh, also…Contents Under Pressure is great…highly recommend …haven’t read Conquer Chiari myself but have heard good things about it…
Take Care,
God Bless,
Lori
I look fine, I pretend I am fine(mainly because I get tired of the looks- like i am a hypocondraic (sp) or something) But I got news for everyone… I am NOT fine… I hurt, I ache, and I am overwhelmingly tired of feeling like i am crazy, because of it… and everytime someone makes that comment “But you look fine” I want to smack those words right back into their mouth…
They say a picture say’s a million words about someone… But a picture LOOKS like someone is happy, when deep down they might be more miserable in life than anyone knows… I just wish people would learn to trust us when we say, that something is going on with our own bodies, heads, and minds…
teresa that is so true, i had a girlfriend over yesterday, who said you look good, i was dizzy and felt like i should of been in a dark hole, but she couldnt see that, grgrgrgrgrgr, it does make you angry,
we are not fine, we battle everyday just to stay a float,
your not crazy, the easiest way to deal with chiari is understanding, and people saying we believe you,
this is a mental and phyical illness, why dont people be more sentive…
i hope you are ok today
Thank-You Jolene… I am doing OK… Dr has put me on more med’s… not so sure how I feel about that yet… No pain pills… But shoot, might as well be… Because I am more drug out and feel worse than I have felt in a while… But promised I would give them a few weeks to help… Hope your doing well too.
joelene hossack said:
teresa that is so true, i had a girlfriend over yesterday, who said you look good, i was dizzy and felt like i should of been in a dark hole, but she couldnt see that, grgrgrgrgrgr, it does make you angry,
we are not fine, we battle everyday just to stay a float,
your not crazy, the easiest way to deal with chiari is understanding, and people saying we believe you,
this is a mental and phyical illness, why dont people be more sentive...
i hope you are ok today
teresa im surprised you not on some kink of pain relief, im on an antidepressant for pain, it helps the nerves, so far so good,
but im on record for something more stronger if that does work,
i know it suchs, but all you can do is hang in there, and keep pushing
Teresa:
I feel like you read my mind …I feel the same way you do when folks say ‘But you look good’…yes…I too would love to give 'em a wee slap in the face and say …WAKE UP…I AM NOT WELL!!!
Thank God for you all here…you help me feel sane! I hope you are feeling better tonight, Teresa.
theres nothing to be afraid off abby, its the chiari that makes you fell that way, NOT YOU,
If you were normal, would of you felt they way you do, yes maybe but when you had a flu or something normal.
Do you feel better saying it?, it doesnt make any difference or a bad person, you are who you are, chiari is what it is, sometimes we cant help the way we think or feel,
i want to slap to, but i dont, i just get angry and then down, and wonder how im going to survive this,
joelene
i think if people were as understanding as they think they are, they would jusy keep quiet.
Suz:
Always love to read your memories!!!!!
"But ya look good"......LOL
Love,
lori