Author Topic: when others disappear in life after a tough medical diagnosis  (Read 7098 times)

ppearl214

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when others disappear in life after a tough medical diagnosis
« on: October 06, 2008, 06:21:57 am »
Hi all,

I'm not going to rebump the thread in "Archives" but will put the link here:

http://anausa.org/forum/index.php?topic=966.0

I started a discussion a while back about how when tough medical diagnosis are given (ie: AN's, cancer, etc) and those around us just don't know how to deal with it or just disappear in our lives. 

I note this again here, in a proper discussion forum, as this has arisen again (to me, behind the scenes) and many still continue to endure this.

This is not to bring anyone down, but.... I note it here as this is a real situation that many endure... and my hope by posting this is to help newbies understand that this can happen... and to share remedies on counteracting it.

For me, after this thread occurred, I learned that I cannot spent enormous time and energy trying to figure out why some folks react the way they do... whether in nasty words... or in actions (or lack thereof).  I learned that anyone wants to try to knock me down... well, heck go for it, as I am a much stronger person now that will not allow anyone to knock me down.... and I can withstand any crap that anyone wants to dish my way.

So, this is posted for all those that have endured this... and to share with you that we can certainly rise above anyone that tries to knock us down.....

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

leapyrtwins

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Re: when others disappear in life after a tough medical diagnosis
« Reply #1 on: October 06, 2008, 06:26:31 am »
Amen, Phyl.

I totally agree with your assessment of not spending "enormous time and energy trying to figure out why some folks react the way they do".

Been there, done that - and found it totally pointless.

Life is what it is and try as you might, you just can't change other people.

In situations like that I've found it best to just move on and not look back  :)

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

hannie

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Re: when others disappear in life after a tough medical diagnosis
« Reply #2 on: October 06, 2008, 09:39:42 am »
Phyl,

I'm sure i speak for many newbies when i say thanks for putting this thread up there. I've had a few friends being insenstive and laughing at me, or not getting in touch at all. Io its nice to know that i'm not the only one to experience this (although not so nice for everyone else in the discussion thread who have been hurt by their friends too!).  I think having an AN shows you who is really important to you and who you can really count on.

Jan - I think i'll follow your advice and (as hard as it is) just move on and not look back.  :)

Hannie

Jim Scott

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Re: when others disappear in life after a tough medical diagnosis
« Reply #3 on: October 06, 2008, 02:59:13 pm »
Phyl:

I can't honestly say that I had any friends, family or acquaintances abandon me or keep their distance after my AN diagnosis.  Frankly, the symptoms, diagnosis and surgery all happened with in a fairly short period of time.  Within a few months I was pretty much back to normal.  I had a lot of folks I knew inquire about my health ("how are you?") but no one noticeably withdrew from me.  If they did, they weren't very close anyway, because I never noticed their absence. 

I know it's true that some people, be it family, friends or co-workers, will withdraw somewhat when you have an illness.  Cancer tends to scare off a lot of people.  I've seen that happen more than once.  It's sad but not too hard to understand.  Most people are very frightened of just the word 'cancer' as it affects just about everyone on some level.  It seems everyone knows someone who died of cancer. As you stated, in these situations, some people just don't know what to say.  They are a bit ashamed at being nervous around the ill person and sometimes will (unwittingly) say stupid and/or hurtful things.  I think some folks just want to avoid doing that, don't have a clue as to what to say (especially to an obviously terminally-ill person) and so, pretend this isn't happening.  I think guys have an especially hard time dealing with this as we are not usually comfortable expressing our emotions to another guy and so, just don't know what to say or do.  Pretending nothing is wrong is ridiculous (but some do this) and yet talking about a friend's facial paralysis or, worse yet, imminent death is hardly the way most guys wish to spend the afternoon.   

I've been around long enough to have learned that I can't (and don't) allow other people's opinions or actions to control my life or my actions.  I do what I do the way I think is best.  If friends or family choose to abandon me, ignore me or even say hurtful things to me  I can't stop them but I don't have to let their words or actions have much effect on me.  I like approval as much as the next person but I won't pretend to be something I'm not in order to get it.  If an illness drives some people away, that is their choice. However, I don't have to allow their withdrawal to depress me, and I never have.   Actually, I figured that out while I was still fairly young.  I think most sensible people do.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

wendysig

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Re: when others disappear in life after a tough medical diagnosis
« Reply #4 on: October 08, 2008, 06:40:00 am »
Hi Phyl,

I think at least some people don't know how to handle someone else's bad news/diagnosis.  I felt almost  totally, emotionally abandoned by my husband after my diagnosis.  When I tried to talk to him about it he would tell me I was thiinking about it too much.  How could I NOT think about it.  I had a brain tumor.  Things remained chilly and distant between us during the entire time I was reseraching this thing and going for consultations -- my sister is the one who came with me and supported me the most.  Rob only came to my first consultation.  Once I had my surgery, I was relieved to find that he was freaking out the whole time and didn't want to freak me out too.  He is such a control freak and this is something he couldn't control.  His refusal to talk to me almost cost us or marriage though.  Sometimes when people don't know how to handle things, they just don't, which is a really bad thing.

 I also have a friend who would constantly say she never heard of anything like an acoustic neuroma or the symptoms I was having.  It was very upsetting and annoying to me as she tells me about all of her problems and expect me to be sympathetic.  She iis certainly no medical expert and I finally told her so.  She didn't talk to me for a while but I really didn't care.  The next time we got together, which was very recent and a couple of months later,she apologized  for her behavior but the damage is done in my mind.

Like you, I've decided that if the people in my life who I think I can count on let me down or treat me in a hurtful manner when I need them most, I no longer need them in my life.  I made my husband the one exception to that rule.  I also made it clear that his behavior had not been acceptable and had better not be repeated.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

Debbi

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Re: when others disappear in life after a tough medical diagnosis
« Reply #5 on: October 08, 2008, 05:53:54 pm »
For everyone who's felt abandoned by friends or loved ones, I'm sending you a giant hug. 

When I found out my mom had cancer a little over 10 years ago (she beat all odds and is living a healthy, happy life now), I was amazed and shocked that some of my friends didn't want to talk about it or gave me the "don't worry, everything will be okay" line.  That entire chapter in my life forced me to look at all the relationships in my life and I will tell you that I made a conscious decision to end several long term "friendships" as a result.  And, I'm not sorry. 

I realize that sometimes people have a hard time knowing what to say when someone is facing a terrifying illness or disease, and I understand that it can be uncomfortable.  But, if you love someone, you suck it up, put your own feelings aside and give them your time and your shoulder and your caring.  Period. 

I am happy to say that when I was diagnosed earlier this year, all of my friends and my family stuck with me and were there for me each step of the way - and I am truly blessed.  I hope that I am always that good a friend to the people in my life.

Wendy, a special big hug goes out to you, my friend.

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

MaryBKAriz

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Re: when others disappear in life after a tough medical diagnosis
« Reply #6 on: October 17, 2008, 05:35:43 pm »
Hi Debbi and all!

I really agree with Debbi! She is and example of reaping and sowing. You are such an inspiration to me and I am sure others on this site. Carrying on the reap/sow analogy...there are some "crops" that just have to be ignored so the good crops can flourish. I think Debbi, you have good friends because you treasure them and realize you deserve that in return!

This web site is just the medicine we all need to grow our new crops. Funny ME using THIS analogy, I would not knoow which end of the tractor to even get on, but hopefully, you all understand what I am saying.

Mary 8)


Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

MAlegant

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Re: when others disappear in life after a tough medical diagnosis
« Reply #7 on: October 21, 2008, 01:52:29 pm »
Yes, I have seen this happen and I've decided that some people get scared and realize how easily this could happen to them and just can't deal with it.  My friends certainly rallied around me but some were just more comfortable than others.  And some were so afraid that I would die that they were upset to the point where they just didn't know what to say.  I get it.  But, the friends that kept calling and coming over and helping out....they will have my heart.
M
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Soundy

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Re: when others disappear in life after a tough medical diagnosis
« Reply #8 on: October 28, 2008, 10:35:40 am »
I have had some people fade out of my life ... grieve the loss and moved on

and the opposite thing happen where a few almost smother me by trying to hard to take care
of me ... I have problems but am not a total invalid and get mad a a few that were being too
helpful and had to tell them to back off...

I have read this thread a time or two and not wanted to post this because it sounds a bit ungrateful
on my part ... I am not ungrateful but need to stumble for myself and not have too much done for
me ... a few still hover when around me and will take stuff from me that I may be carrying or try to
take over some task I have promised to do...

I finally decided to go on and post ...just wonder if others have had this same thing that I don't know
if it is a problem or me being stubborn and just not as accepting of help as I should be ... but still hold
my opinion that I have to take my bumps with help as long as it is not too much...

Goodness I talk in circles and even confuse myself  :o
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Melissa778

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Re: when others disappear in life after a tough medical diagnosis
« Reply #9 on: October 30, 2008, 12:15:32 pm »
Wendy,

I had the same situation with my husband and my husbands family.  Luckily my mother and my very close friend were a great support to me.  But I've felt alot of anymosity and resentment towards my husband over the last few months and we've had some problems.  But I finally let it all out and told him how I almost felt "abandoned" and how hurt I've been and he's really stepped it up and been WONDERFUL since I let it all out.  His family however, has said some very hurtful things and has not been supportive, he never wanted to believe it.  But finally heard it for himself and had words with his mother and sister.  I'm grateful he stuck up for me FINALLY and all is good now with him and I, we just don't see much of his family anymore.  I just wish he had been this supportive when I had my surgery.  I've been seeing a doctor, psychologist, whatever....just to discuss how it all really does change your outlook,it changes alot more than you think it will, at least it did for me.  And it has really helped to talk to someone outisde of the equation. 

One can only hear "everything will be OK" so many times before going absolutely insane......I always wanted to say to those who said that "really, and just HOW do YOU know that?"  But I think it's people's way of giving some sort of response because they dont' know how else to respond and talking about it makes them uncomfortable.  Or maybe they feel like my in-laws did, that it's all a ploy for attention.

That which does not kill us only makes us stronger.  And I may feel physically weak at times, but boy am I emotionally about as strong as I'm ever going to be.  Just trying to make sure my skin doesn't get "too thick" :)

Hang in there all.....

Melissa
1.6cm X 1.6cm diagnosed Jan 30 2008
Translab Surgery scheduled for May 15th with Surgery went well, got ALMOST all of it.
GK to zap the rest on 10/22/08
2010 MRI showed no new growth tumor measuring at that time at 1.1 x .4
2011 Holding steady
2012 new growth 1.7 x .7 :( :(

Cheryl R

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Re: when others disappear in life after a tough medical diagnosis
« Reply #10 on: October 30, 2008, 12:41:02 pm »
My husband tells me I worry to much about my hearing issues and how it all feels.      Since I have NF2, I certainly do get concerned over ways things act anymore.                  I look pretty normal (unless I try to smile) so all the wondeful little AN after effects aren't real apparent.         But I have the whole list of them.
He is one who thinks how he thinks things are is the way it is.     There have been issues here too.
I am 7 yrs this Sat since I had my first surgery.                  I do feel very very lucky that I have ended up as good as I have since almost lost all my hearing and do have it mostly on the one side.
                                                     Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

JudyT

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Re: when others disappear in life after a tough medical diagnosis
« Reply #11 on: December 11, 2008, 04:53:23 pm »
I have had this happen to me twice.........when my husband died in 1995.......my so called friends simply left.....within 2 weeks they were gone.....What happened to..."We're here for you...want to take you out to dinner etc." never did.....so I said self ..."If you think you need some friends....go make some new ones" and I did.....wonderful ones too. Now.......here it is again.......different issues same story....where did they go? I do have some wonderful people in my life and they are enough.....some are right here on this site and the CK site. It is my belief that you get get back what you put out.....negativity doesn't feel good to me......positive input does. I try to for the most part to take good care of me....when a "meltdown" comes I know how to cure it.....most of the time. People recact to you what they fear for themselves.....it really isn't us....it's about them. If they don't see us in our own light..... that there is more to us then an AN etc. then they truly have a problem of there own. I am soooo grateful for these forums and the open sharing and concern for each others woes. we truly care for each other.....even though we have never met personally. It's a wonderful feeling......I can come to this place and read and receive such peace.....even in the night when I can't sleep. I have three loving sons and they want to see the "A type" mom they always had. Well..........I'm still here......just sitting down because that's what I need to do. My "girls" (daughter-laws are fabulous) my sister in law is truly the best.....they get it! They pitch in and take up the slack....God bless them! I like me and my treating myself well feels good. If it doesn't suit others.....so be it. Take heart and use the tools you have the best way you know how......whatever it takes. I'm already lookin' for that wii/wii fit deal.....I'm excited about it.

Dog Lover

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Re: when others disappear in life after a tough medical diagnosis
« Reply #12 on: December 11, 2008, 10:04:36 pm »
My youngest brother who I have always been so close to had more or less isolated himself from the family for about 8 months (long story)...until he found about about my AN. He was there for me big time - and still is. My other brother didn't say a word to me, didn't acknowldge that I was in the hospital, and when others in the family told him he should call me or visit, he just turned away. Then tried to act like nothing has happened once he sees me after about 8 weeks post-op.

I have no time for him in my life. I've very seldom felt that way about anyone in my life, but I still do about him. I may not sound like it, but I'm really not even bitter anymore. I've just moved on. But, I also will not have him in my house over the holidays when everyone else comes over. I have no time for him, now.

Ok....maybe I'm a LITTLE bitter.  ;)

I have a cousin who also pretty much disapeared and has only contacted me (by email) since my surgery to see if I survived the layoffs at the company I work for. (Sent it to my work email, no less which I thought was funny). Her mom even told her it was major surgery when she had mentioned that she was under the impression it was no big deal.  We grew up together and she works for another company in a building next to where I work. We used to go to lunch etc. and out for walks around the pond at the work campus. I answered her emails, but I won't initiate any and I'll pass on any lunches...if they are ever brought up again.

I had also started dating someone shortly before my surgery. Thankfully I had decided that I wasn't interested in him, because when he found out what it was, he determined that I wouldn't be able to fly (he's a pilot) and he wanted someone to fly to the Ozarks with him for fun.

I don't think about that stuff too much anymore, since I am starting to feel more and more like my normal self (fatigue aside) it just doesn't come to mind a lot. But after reading this...well...ha ha ...it feels kind of good to get it off of my chest.

Cathy
Cathy
9mm x 3mm Left Side AN
Mid Fossa Aug. 21, 2008
Dr. Gantz / Dr. Woodson
Univ. of Iowa Hospitals and Clinics
No facial issues, hearing saved, I keep active and feel back to normal.

Sharky

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Re: when others disappear in life after a tough medical diagnosis
« Reply #13 on: September 13, 2019, 12:47:16 am »
I know this thread is years old, but lord it has just helped me SO so much.
NF2 suspected--genetics assessment 08/2019
05/25/19 W&W until 11/26/19
05/20/19-AN found R ear via MRI--7mmx4mm

-fullness in R ear, minor balance issue, tinnitus, FATIGUE-

Maria Odete

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Re: when others disappear in life after a tough medical diagnosis
« Reply #14 on: September 15, 2019, 02:27:59 pm »
Hi Sharky,

If you are alone or feel lonely, please don't feel this way. God Yahweh draws close to us when we seek Him. He never forsakes us, and He is always near us at all times if we make Him our trust.
 
I hope everything is well with you.

Please consider these two Scriptures bellow for you to ponder:

PSALM 16:8 " I have set Yahweh always before Me, for I am at His right hand. Therefore, I shall not be moved nor shaken, for Yahweh is with Me."- The Holy Scriptures

PSALM 73:28" But as for us, it is beautiful to draw near to Yahweh! We have put our trust in You, O Yahweh our Father, so we may declare all your works." - The Holy Scriptures


Maria Odete
Totally resected 3.5 cm Acoustic Neuroma
Year of Surgery: 1992

PSALM 83:18:"Let men know that You,Whose name Alone is YAHWEH,are the Supreme Head over  all the earth!"-The Holy Scriptures
PSALM  37:14-20 The Holy Scriptures - Isaiah 46:4 -The Holy Scriptures - PSALM 35:10 - The Holy Scriptures