Author Topic: people just don't understand  (Read 17088 times)

LisaP

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Re: people just don't understand
« Reply #30 on: February 09, 2010, 06:37:05 pm »
Hi Tricia,

I know exactly how you feel, I am still W&W and have daily symptoms, I get comments from people like "you don't look sick, are you sure that you are".  I don't feel good most days with symptoms of head pain, head aches, dizziness, nausea etc.   I even don't say too much to my husband anymore because I don't want to worry him.   Most people forget that I have this until I remind them.

I am in the process of hopefully starting a support group in my area, western Massachusetts, I am looking for others with AN to talk to and support each other.  I still am grateful for this forum, it has help me tremendously.

Hang in there and best wishes,

LisaP ;D
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

gman100

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Re: people just don't understand
« Reply #31 on: February 12, 2010, 11:08:07 pm »
This thread struck a chord with me as well.  For a few months everybody was very accommodating. However, as time waned on, I heard quite a few comments from those who were closest too me.  For instance, one time I was on the internet just reading about double vision and my brother tells me that I am obsessing and just need to move on. Another instance, I was in the car about a year after surgery and my girlfriend tells me I need to move on and it's not normal to be upset for as long as I was.

I feel like people think I should be over things and that I'm just a little nutty and obsessive now. If someone was paralyzed and in a wheelchair I don't think people would be telling someone to get over something, especially after one year. I think people sometimes view facial paralysis as "oh he just can't smile now" or something along those lines. Maybe they just get sick of hearing someone complain?

I don't think people realize how much of a life changing experience it can be to have some of the side-effects that you and me suffer from. I suck at all sports now because my double vision has left me with no depth perception and even if I did have it I wouldn't have the coordination and balance. I can't even play catch anymore with a ball unless someone is purposefully throwing it nice. I hate going in water or outside, especially on windy days, because my eye starts to feel dry and irritated. I could go on and on but I'm sure I'm preaching to the choir here.

-Chris
8/4/2008 - Pilocytic astrocytoma removed
9/21/2008 - 1.0g Gold weight
6/24/2009 - 7/12 Graft + 1.6g Gold weight
Balance/Dizziness: From 0% to 75%
Double Vision: From 0% to 70%
Facial Paralysis: Corner of mouth just started moving a bit

Jill Marie

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Re: people just don't understand
« Reply #32 on: February 13, 2010, 11:56:57 am »
Hi Chris,  I've been dealing with this since 1992 and still have some of the same issues you have.  As you say I could go on and on and sometimes I do.  Every know and then I throw myself a pity party then I seem to deal with things better and have a good time.  The not being able to smile is a big thing when someone thinks you don't want to smile or you must be in a bad mood.  It seems rather rude to make them uncomfortable by explaining why you can't smile but I guess it's ok if they make me feel uncomfortable.  There's 2 people at work that keep telling me I should do this silly thing called a "fish face", won't bother with the details of why they want me to do it, anyway, one of these days I'm afraid I'm going to loose it and tell them it's not that I don't want to it's that I CAN"T, nor can I do several other things as you mentioned.  I've worked there since 1995, you would think they would have figured it out by now.  Thanks for letting me vent! 
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

Soundy

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Re: people just don't understand
« Reply #33 on: March 14, 2010, 02:58:02 pm »
You are not alone in the world of not understood ...

hang in there and don't let anyones lack of understanding get in your way ...you will have to learn to like the new you ... you may mourn the old you ... when met with people saying things to the effect that I need to get over it I feel like telling them to go get a hole drilled in their head and let someone play around in their head then tell me how to feel ... but I don't ... I have learned to largely ignore the negative and embrace the positive

« Last Edit: March 14, 2010, 03:04:20 pm by Soundy »
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

nanramone

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Re: people just don't understand
« Reply #34 on: March 28, 2010, 05:52:30 pm »
Hi all - it's just the beginning for me - I haven't even seen the first surgeon yet.

I have told few people about this condition...I have a wide circle of social acquaintances...of the few people I've told, some are casual friends. Their responses are varied, but I notice some seem to run for the hills - it's as if I have the plague. Interesting. I am feeling pretty good right now, looking forward to my first surgeon visit, but still....it's odd that a few people seem to shun me now...all I did was told them about this little tumor. I presented it in a low key manner, etc...it is interesting to discover the "fair weather friend"....

I guess life situations help us learn about people. It's very interesting to me.

Thanks, all of you.

Wwoodian

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Re: people just don't understand
« Reply #35 on: April 15, 2010, 05:42:31 pm »
Yes, you absolutely learn who your friends are!
Diagnosed with 1 cm AN on 10-28-09
Middle Fossa surgery on left side 11-20-09
Dr. Friedman and Dr. Schwartz at House Clinic in LA.
No hearing loss or facial nerve problems
Severe double vision and bouncy vision
Yahoo!  Double Vision gone after 3 months!
Did a full marathon 1 1/2 yrs after surgery!