Author Topic: When others in your life find out, do they leave your life?  (Read 39886 times)

ppearl214

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Re: When others in your life find out, do they leave your life?
« Reply #90 on: June 25, 2009, 01:41:27 pm »
I only want to say that I am glad this thread lives on and that others are gaining from what has been shared here.. and know that I continue to also gain from what has been shared here.... as I still try to come to grips with those that have disappeared in my life over time, since my diagnosis.  thank you all for sharing what you do. Truly!

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

another NY postie

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Re: When others in your life find out, do they leave your life?
« Reply #91 on: June 25, 2009, 08:53:51 pm »
I was just diagnosed two weeks ago and I sent out an fyi email with some questions (Ie. anyone know anyone who has gone through this, etc) I have been overwhelmed by the responses. Friends of friends of friends including a dr. from Germany have sent me advice, referrals, etc.  However, one of my closest friends (my maid of honor, no less) never called or replied to my email.  I just spoke with her on the phone two days ago and she never even asked about it.  All she did was talk about herself.  Then I mentioned what I was dealing with after about fifteen minutes about talking about her (I kept waiting for her to say something) and she said she had no idea it was so serious.  She said she thought it was nothing even though her husband had been telling her to call me everyday ....but she was busy (she was moving at the time so she was truly busy) but even so, she never read my email.  I was VERY hurt and have really questioned our relationship.  I have a feeling this journey is going to highlight a number of friendships that seem to be a bit lop-sided.  I do believe that it isn't really a true friendship if they are not there for you in times like this but it still hurts alot.
5 mm lateral IAC (impacted?) diagnosed 6-09-09
middle fosa 9/23 HEI - Brackmann/Schwartz
all tumor gone, facial perfect, no ringing
SSD on right side - Rockin' and Rollin'

nancyann

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Re: When others in your life find out, do they leave your life?
« Reply #92 on: September 11, 2009, 07:13:32 pm »
Hey NY newbie:  Either your friend is quite self centered or she doesn't know how to respond to the bad news/ doesn't want to think of you with a serious situation.
In any case,  it is what it is - you will find as time goes on who will be there for you through thick or thin,  I did.
Always good thoughts,  Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
right facial paralysis
good to go.

Jim Scott

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Re: When others in your life find out, do they leave your life?
« Reply #93 on: September 15, 2009, 12:44:02 pm »
My problem seems to be the opposite.  I'm avoiding others in my life, and that's not good!  Now what?   :-\

Unfortunately Cheri, unless you have a very dedicated, diplomatic and persistent friend or relative who simply won't accept your distancing actions, eventually, you're going to be pretty lonely.  Most people won't push too hard if you indicate a lack of interest or desire to socialize with them.  They'll simply 'cross you off their list' of available friends and move on to other people they want to socialize with.  They'll tell others that "it's too bad Cheri has gotten so anti-social", and acquaintances will nod their assent and mummer "she's been through so much".  Then they'll move on to other subjects.  Anyone who is really concerned about you will hope you 'come out of it' but at some point, they'll just let you withdraw and accept that as your right.  The reality is that everyone has their own problems and can't or won't spend a lot of time trying to draw out someone - even someone they like and care about - who doesn't seem to want to socialize anymore.

You know withdrawing isn't emotionally healthy.  What to do?  Well, it's pretty much on you, Cheri.   Frankly, you have to make the first move.  It doesn't have to be attending an 'event', like a party or big family dinner.  Inviting a good friend that you know cares about you for a 'cup of coffee' (and some sharing on your part) is a good start.  This can be done at a coffee house, restaurant or in your kitchen, where you might feel more comfortable.  You can keep it light and short or stretch the 'cup of coffee' out to as long as the friend can stay and talk.  The telephone is always a good tool to stay in touch.  My wife uses it to great advantage when she doesn't feel like going out too see people.  E-mail works, too.  At least as a start.  You can use the phone or e-mail to re-establish a connection to a friend or favorite relative and perhaps plan a low-key 'outing', like shopping or lunch.   The point is that you have to reach out.  Whether or not those you reach out to, respond, is up to them.  Don't set unrealistic expectations and you stand less chance of being disappointed.  Remember - everyone has their own problems they're dealing with.  Of course, doing volunteer work (charity, church, school, arts center,, an AN support group, etc) is a great way to get out, meet folks with a shared interest and take your mind off of yourself for awhile, which we all need to do sometimes, no matter our situation.   As you noted, avoiding other people in your life is never a good idea.  

I don't mean to be presumptuous, Cheri.  I'm no councilor and I have no idea if anything I've offered is even feasible for you or germane to your situation.  Just a few practical thoughts that I wanted to send your way, Cheri.  You seem like a vibrant person and I was dismayed to see you post that you're avoiding others in your life.  I anticipate you changing that, soon.  Of course, you have to take the first step.  I hope you 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.

sreda

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Re: When others in your life find out, do they leave your life?
« Reply #94 on: September 20, 2009, 08:38:50 am »
I am sorry some important people in your life have stepped back. I sympathize. After my surgery, I did not lose any friends or anyone else, in fact, seveal people i didn't know very well wanted to help, so they called or came by the house or made meals, etc. I do think that sometimes people feel awkward when someone they know has an illness or injury - they don't know quite what to do, or how they should help, or if the ailing person even wants help. Possibly they make think an AN is cancerous, so they may not know exactly what you need. I have probably let down some people over the years because they were ill or had family that was ill, but I was not sure if they wanted me to speak to them about it or to help, so I did nothing. That was probably a mistake.  But sometimes it is hard to tell if someone else wants or needs support.
Sis
Left side 4mm AN removed middle fossa 8/2004 at House by Drs. Brackmann and Hitselberger. 48 yrs. old

ppearl214

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Re: When others in your life find out, do they leave your life?
« Reply #95 on: September 21, 2009, 01:20:44 pm »
That's been a huge part of my frustration.  I 'look' just fine on the outside but people have no idea what's going on on the inside, even people who know about my AN journey. 

Cheri (and others).

I know I've mentioned it a while back, in passing, but I'm going to suggest a book....

Living Well With a Hidden Disability: Transcending Doubt and Shame and Reclaiming Your Life (Paperback)
by Stacy Taylor


http://www.amazon.com/gp/product/1572241322/ref=cm_rdp_product

My sister bought me this book many years ago when I first took ill (non-AN) and it really helped me to understand  trying to deal with the issues when others don't understand when I complain about not feeling well.. .and thoughts as to how to overcome. It may be worth a peek.

Hang in there. Hugglez to you all!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

ppearl214

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Re: When others in your life find out, do they leave your life?
« Reply #96 on: September 28, 2009, 06:21:07 am »
Cheri,

Hoping it helps.  I will note this... some of you may know that I was appointed by my town to the Commission for Disabilities.  When I joined the commission, there was a lot of activity for those with "outward" disabilities and I had to remind them about those of us with "inward" disabilities (ie; hearing loss, chronic/dibilitating pain, etc) and am thrilled to see how much more they are recognizing it.  To try to have others understand disabilities that are not on the outside is truly difficult, esp. when we can look "normal" to many, when they have no clue what is going on from within.  My hope is that the book will help with an understanding of living with "hidden" disabilities and ways to address it. Let me know your thoughts on it if you do, by chance, read it.

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