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Chiari Malformation Community
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Social Issues

I have had a bad time since I started having CM1 symptoms, my girlfriend can not deal with my headaches causing me to be isolated (I don't understand why I am becoming isolated) and my family thinks CM1 is no big deal. On top of my physical pain, I am having a lot of emotional and mental pain mainly because nobody close to me wants to understand my disorder. Has anybody else suffered the same problems and is there any person to person support groups (Louisville area)? I just want to interact with people who understand and even though I feel isolated I still want to have human interaction.
3 Responses
1375148 tn?1323170521
So sorry to hear things arn't going to well for you at the moment.

I can relate, i think we all can to a degree, and it's nothing to do with Chiari, It's the same when you have any illness / condition that is so misunderstood by people. It gets to the point where your scared of saying how you really feel because you think people may be bored of hearing it, I've seen a decrease in my social circle defo!! My friends still go out but i don't hear about it every time any more, they think there doing the best for me so i can conserve energy but really i'm like sometimes i'ld just like to go all out on a bender, every  now and then i could probably handle the 'after' effect of pain, just to feel good about myself for a while. I'm thinking of joining a  gym, to do yoga or swimming, maybe that will be my new social circle.

Have you thought of joining a class, or gym, something like that??



1413972 tn?1305583364
hi ya,
i can relate too.. my fella tries to understand but i know he cant.. and i know we dont do half the stuff we could because of my symptoms. i guess the feelin of being left out makes me feel even worse, that people treat me different - yet im still the same person! i too have become very withdrawn from social enviroment, its only become clear to me recently that i hav been, i was blamin others but deep down its my doin too. i too joined my local gym and plus it was free, i do feel a little bit better. it is hard for people around us to understand ive recently fall out with my twin sister over my health issues, which is sad as for me ive been sufferin for nearly 6yrs.

you may feel alonely but here we are all sufferin and can relate to you one way or another, so dont hesitate to pop on here and leave a post. for me since findin this web i feel a little weight and loniness bein lifted.

emz :-)
620923 tn?1452919248
COMMUNITY LEADER
Hi...I too am  so sorry u r dealing with isolation....it is sooooooo hard to find a dr to understand this condition , one that knows  and understands.Since most drs, good drs r not trained on new research on chiari they r following old school info...which most indicates chiari not to be an issue....so if drs do not get it, how can we expect our family to?
yes this condition does cause many unexpected symptoms.
Not only does it cause many symptoms some of the unexpected ones r those of depression, anxiety..even anger!

Isolation happens as we realize that most social situations can cause symptoms to flare and we r in more discomfort...so we avoid things that  cause it.

All the members here can relate and r willing to share their experiences and concerns...know we r here for u  so u finally realize u r not alone.....

The members here have done so much for me, I too felt like u do, but knowing and sharing with my chiari family here has helped me understand my condition and my symptoms .

Like emz mentioned...do post ur concerns and questions...we will try to help u understand how to educate ur girlfriend and family..and ur PCP!!
"selma"
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