Why don't people get it....

[Vtech]

With some of the people closest to me, it is like i told them i have a cavity in a tooth. Why don't they get it? Why don't they understand this is scary. Granted I have not seen a specialist yet,  and I don't know if he will want to operate or wait and watch... but either way... I have something growing in my head and it's of concern to my health. 

[Jim Scott]

Laurie ~

Unfortunately, this casual attitude some folks exhibit when confronted with a family member, friend or co-worker with an AN diagnosis is all-too common.  You're right, they really don't get it.  

Remember, the AN is invisible to them, they don't have to live with your symptoms and, unlike cancer or a heart problem, they aren't informed (via the media) about acoustic neuroma and simply are reacting from ignorance.  Then there is the reality that everyone is dealing with something and few people (that haven't had an AN) are able to be as empathetic as we might wish.  This is just the way it is.  Human nature and all that.  This is why we have these forums.  They give AN patients an opportunity to vent and we can support one another oiut of empathy because we know what you're dealing with.  This is also why I always encourage the newly-diagnosed to use the ANA website and, especially, the forums, as a 'resource'...because we are.  

Here's to better days.

Jim

[patt]

Laurie ---

I agree with Jim.   You have come to the right place.  WE understand.

I was diagnosed with a 2.7cm AN in March 2010.   I had people say to me ---- "You don't look sick"!!    Right, I don't look sick, but I am sick!!!    Oh how I wish I didn't have this thing.

Things are calming down now.   I did my research  -- talked to many Dr. -- and read and read on this forum.   This forum is the BEST!!!   As of right now, I have started "FSR" treatments.    I will be having 30 treatments  --- 6 weeks.    I completed 4 of them --- 26 left to go  -- can you tell that I am counting?   I feel that I am in control and that I have made the right decision.

You have come to the right place.  If you have any questions, there are many that have gone thru what you are going thru and there are us that are traveling the journey right now.

Take care ----
Patt from Minnesota

[LisaP]

Hi Laurie,

I am going on two and a half years since my dx, most people, except those close to me have forgotten.  When I remind them, they say oohh yeah, you look fine.  So I don't talk to people to much about it.  I know what I have, I deal with my symptoms every day, do the best that I can.  I am so greatful for my family and the support that I do have.  Hang in there.


LisaP

[CHD63]

Laurie .....

Jim said it very well ..... especially when we look "normal" on the outside, it is difficult for people to perceive us as having anything seriously wrong.  Unfortunately this is true both pre-treatment and post-treatment.  Although very difficult to do sometimes, I just go on my way and try not to be concerned about those acquaintances.  ..... and there is a big difference between friends and acquaintances.

I hope you have sent for the ANA materials and/or received them.  For your immediate family, I would show them the materials ..... that should clarify some of the issues you are facing and the seriousness of them, without you having to tell them.

Some people do not know how to deal with serious medical issues and therefore minimize them to keep from dealing with them ..... it is their own defense mechanism.  In my mind that is a rather selfish approach but it may just be their inborn defense.

As the others have said, we know what you are facing so vent to us on this forum ..... that is why we keep active.

Best thoughts and continuing prayers.

Clarice

[Lita]

This is pretty new to me, early May I found out.  When just diagnosed, it seems there is so much to take in, which makes offhand comments so disturbing. I'm also taken back by a few people's reactions. It is a shame people act this way Barnello, but I have to agree some don't get it or even are selfish. It's a good thing to stick with real friends.

I think some people think it is just an ear problem, or even a neuroma like Morton's "neuroma" of the foot. I started saying it is a relatively good tumor in a bad spot in my head because I was tired of the distracting stories, including details of every single person and their family's hearing problems, you're lucky because it could be worse (I would be even be luckier if I did not have cancer and did not have a neuroma) and the funniest - my co-worker telling me the details and recovery of her ex-husband's salivary gland calcification removal over twenty years ago!  I try to remember the good wishes of kind people and laugh about the rest with my husband. And read this forum.

[Tod]

Laurie,

It may also be quite simply that a brain tumor is beyond scary to most everyone. If you have been walking around with one of these slow-growing time bombs, all of a sudden this is a possibility for anyone and everyone you tell. Empathy for something so scary is perhaps more difficult than we realize.

On the other hand, it may be less of a question of empathy, but more of an issue that since you don't have a treatment plan yet, folks just naturally don't want to keep bringing it up. They figure you have enough to deal with and their response is try to be normal until you know ore.

Bottom line, this is difficult stuff and everyone responds to these things differently.

The good news is that everyone here understands in one form or another.

Good luck to you.

Tod

[Vtech]

Thank you everyone. Once again you all are a wonderful voice of reason. I am probally just expecting too much of people. Although, there are a few really close that I still would like to see a little empathy from, perhaps in time when they understand more. I did sent for the ANA info. packet and I should be getting it soon. I am hoping that will help them to understand.

[Cheryl R]

I have had more than surgery due to NF2 and I still have people say to me that  Oh I didn't realize you can't hear out of that one side or have such problems with hearing. Or I thought the hearing would come back on that one side (where first lost hearing)                These are long known friends and not new acquaintances.                       The no balance nerve on either side gets repeated occ too.              One just puts up with it.                         Cheryl R

[mandy721]

It is just over a year since my husband was diagnosed  and 10 months since his surgery.  Ken had very minor symptoms and thought that at most he would need a hearing aid. When the words brain tumor were mentioned, he reacted with disbelief.  Having a benign, but potentially lethal tumor, when you feel  pretty good is hard to grasp. I imagine family, friends and acquaintances  react in much the same way. Any problem having to do with the brain is very alarming.  The brain is after all the brain.  I also think that in our society where we think just about everything can be fixed, that people don't realize the far reaching effects of this type of tumor and the serious, long lasting  complications that can result from surgery.  All during this process, I was very open with people about what Ken was dealing with, and still am.  My close friends are clued in and continue to ask about how things are going.  For those that don't, I don't hesitate to bring the subject up, as it has affected our lives in profound ways. 

[Vtech]

Well I recieved my packet from the ANA. I will do some reading tonight and share it with my friends and family in hopes that it will shead light on this for them. You are all correct, I really do think they see me walking around and fuctioning normal... so it can't be that bad right? Wrong... they are just not informed. I hope this makes a difference. Thank you again for all your support as i spin through all the emotions and fears.

Laurie

[skamper]

Laurie,
People around me learned to understand what was going on as I explained more and more to them.  The support I had from everyobne was overwhelming.  I just think the initial shock of telling someone you have a brain tumor is a little much to take in all at once. 
I just had surgery two months ago to remove mine, I am now deaf on that side, no facial paralize though, I'll take that anyday.  It's been a little challenging at first being SSD, but you sorta get used to it and learn where to sit with people or in places you go too.
I wish you all the best and keep us posted.
Everyone here is here to listen, I've vented a few times and they are all great people on here.
By the way, where do you live, I'm in Nebraska and the docs here were just amazing!
Susan

[turbomom]

Hi Barnello,
I read your comment and thought I'd share my two cents with you. I have had my AN almost a year now and willbe having surgery next month to remove it. I had my husband read the AN literature. All he got out of it was,'it says you will need family support". Period.... that's it. He told me he wanted me to get the surgery so I could get my hearing back. I told him it did not work that way. He wanted to argue the point so I just dropped it. He has not asked me yet how I'm feeling about the upcoming surgery. He does not ask me how I feel. Either he is ignoring the whole thing or he just does not realize the intensity of the whole situation. I pray that u have a supportive significant person in your life that you can depend on. I have told my brothers about the surgery, but I padded it a bit by calling it a "cyst" and not a tumor. I have not told my Mom yet simply because I do not want her to worry(she is in her 70's) and because she spent 7 years taking care of my Dad while he was dying from cancer. I have the support of my best friend Karen and that is a real blessing!!!
Anyway, I have rambled enough to you. Just know that this site is hear(oops, I mean here) for us to help one another.
Take care,
turbomom

[sunfish]

Lots of good comments.  I had CK almost three months ago.  I'm actually doing quite well.  However, I've struggled with high blood pressure since (was low for years before CK), and now some visual problems which the opthalmologist says are neurological.  My husband doesn't entirely get it - he thinks I obsess too much about the whole situation (I do, at times).  When I comment to my family about what I'm experiencing with my vision, they say "Oh."  I've always been really annoyed by hypochondriac people, and now I'm being treated (sometimes) like I'm one of them.  The vision problem is kind of scary.  Had my first post-CK MRI on Monday, don't know the results yet.

[Vtech]

Sunfish

        I wish you the best with your MRI results. Please let me know what the results are. I hope CK is an option I can do and I would appreciate hearing ofyour experience and opinion on it.

Laurie