ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: ppearl214 on October 06, 2008, 06:21:57 am
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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
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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
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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
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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
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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
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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
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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)
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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
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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
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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
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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
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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.
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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
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I know this thread is years old, but lord it has just helped me SO so much.
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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 below 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
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My experience with this was mixed. The big surprise was how poorly my mother-in-law (a former nurse of all things) handled it. She kind of trivialized it, kept saying it was nothing, everything would be fine. Then kind of willfully misunderstood or misheard things ('you'll get your hearing back! wonderful!') To top it all off, after we had helped her move out to be close to her daughter and granddaughter 2 years ago, and done a lot to include her and spend time with her and try to help her with her adjustment to her new home, she decided she needed to move back, and she did so literally the week before my surgery! Then she apparently tried to downplay it to family/friends out there because I'd get messages like 'that's great you got your hearing back' (I didn't - translab - no hearing at all in that ear now!)
It kind of sucked b/c previous to that I felt we had a decent relationship (we'd even do things together, just the 2 or us, sometimes) but she kind of nuked it (my wife calls it 'nuclear winter). She never even bothered to check in after I got out of the hospital.
Anyhow rather than stew on that (although it was kind of therapeutic to just write honestly about it just now, to an audience that will understand) I tried to focus on the good - some people I didn't even necessarily think of as close did really nice and thoughtful things! And my wife was the champion of champs, always there, super supportive, as was my family. I just feel bad things ended on such a bad note because like I said I never really had ill will toward my MiL and I hate for my wife to have a 'nuclear winter' scenario.
Anyhow - thanks for listening. This is a good group. I hope everybody can find some bright lights and maybe people that pleasantly surprise you when others let you down.
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Interesting how some people react isn't it? I'm glad your wife has been a rock for you, and understand how hard it is when, inspite of your best efforts, you can't maintain a good relationship with another member of the family.
FWIW: I have a friend that is very very close, who blew off the initial news (she is also in the medical field), saying when she saw the MRI screenshots she was glad to see it wasn't very big nor likely to be a problem.... several weeks after my surgery, she was asking me if I recalled how concerned she was when she realized that I had a BIG tumor and it was already pressing on places - not good, freaked out! Hmmm, I just don't know why people aren't honest when they hear serious medical news, but I find it difficult to deal with. We're still friends, I wouldn't quit caring about the friend that let my son throw up on her antique rug 20 years ago so I could have an anniversary evening out with my husband, but she lost some of my trust and respect - and like your MIL, had caused some inconvenience and upset for me post-op which just piles on the wondering why?
On the other hand, I had a friend that I only met a little over a year ago, show up at the hospital as I was checking in 6:30 am, and kept my husband company the whole 14 hours of surgery. She cleared her calendar to be my driver the week after I was released, and if I got tired, would just look at me and say sweetly "Chris is sinking, I'm taking her home." There must be a special place in heaven for such a special lady.
I've had some people be complete arses, yet I've had the best support from unexpected directions. I'm relieved that my manager at work is one of the good ones, and blessed that my Son has been intuitively there for me. I had similar experiences 35 years ago when I had surgery to reconstruct my hip as I had giant cell tumors - I guess these things bring out the best and worst in people.
Keep noticing the bright lights - they can really make your day!
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I guess I had not been very close to my siblings, but a couple of years before my diagnosis my younger sister kept on insisting that we get closer and that I come see her. To the point that totally coincidentally, I saw the ENT that gave me bad news on a Tuesday and that Thursday I had planned to be at my sister house. When I got there I told her the news and at that point I was in my read-anything I can find phase. She used to work in the health field, she she seem to downplay the news.
I know her life is more complicated than mine with the demands from her family. But I asked her, if I decide to have surgery would you come and check me in and out of the hospital. I knew I needed more help than that but I could make other arrangements. I was hurt when it took her 4 days to give me an answer and on the way to the airport she finally said yes as long as it did not conflict with her camping trip.
It made me feel alone and I sort went into a pity party for a while. But then I urged myself to stop being silly. I lived alone most of my life and I know how to do it. It is like any problem that requires solution.
It felt so much different when I told the news to a good friend of mine and before I even asked she said just tell me when do you want me and for how long. She said I will come and nurse you to health. Mind you I live in Texas and she in France.
So when in an entire year, my sister only asked once in a one-line Facebook message when is your surgery? There was nothing else to do but rely on those that kept up with the news from my doctor visits and stayed interested.
So I made the arrangements. The legal work so my friend could decide if needed,travel arrangements, etc.
My friend arrived the weekend before surgery so we had a chance to go over the in=n case of need details. She was with me altogether 5 weeks. She saw me through the surgery and the second hospital stay about a week post when I developed meningitis.
I had given my friend a list of a handful of people to keep updated with my news. One of those was my sister’s daughter that had asked me from time to time about how I was dealing with the AN. My sister then started calling my friend wanting to know why she was not calling her and giving her info. My friend was able to tell her that she had been given a list by me and she was only to contact and give info to those in the list. It did not feel as an expression of concern but more like that of wanting to be the one in control.
Those that came to my help are my true friends and support. Not only my friend from France but another one that lives locally (but with an elderly mother at home) yet came to accompany my friend in the waiting room for most of the 7 hour surgery.
My neighbors that even weeks after they would call me to see if I needed anything.
Those are debts that cannot be repaid. My eternal thanks to them.
I do not mean to whine but it does feel good to get the story out of my chest.
My message to those facing these issues is you are the one with the AN and you are entitled to be a bit selfish and seek support where support is given or offered and it may not always be where you would have expected it.
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Oh gosh this thread evokes so many memories! My surgery was back in 2000 and things did not go well. I was hospitalized/rehab for 6 weeks. No memory of the first two weeks. My husband and family were the best. My community fed my family for 2 months (I had young children) and drove my kids to all their events (ballet, soccer, etc.). I couldn't drive for 6 months and somehow my community arranged to have someone drive me to and from out patient rehab 45 minutes away for several months. All good there. But I had a couple of curve balls with friends. My neighbor and friend stayed away from me. I knew she cared, but didn't like seeing me like I was. I knew it scared her. I cared enough about our friendship to force myself on her. I invited myself over for a cup of coffee and she was able to see that i was the same person as always, just had some issues and a funny looking face. I broke the ice and she has been a dear friend ever since. Another close friend totally ignored any attempts of mine at communication or visits. I wrote to her a couple of years later. She had an excuse and apologized, but actions speak louder than words. She really is not a friend anymore. It hurts a lot. I feel teary in my eye (haha!) as i write this. So anyway, I have a lot to be thankful for, just wanted to share my experience.
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This is a good thread and I'm glad it got bounced up.
It's been very interesting to me as well. And it's honestly brought into stark clarity how I have treated others in the past. I'm ashamed to say that I've been "that guy" who adopted the "I'm so sorry to hear that. And I'm sure it'll be fine!" approach regarding a friend who was going through a rough medical diagnosis.
I chalk a lot of the "minimization" to people's own fears of their mortality. Sort of a "whistling past the graveyard" effect. This stuff is a heavy lift, and it's life changing. That's very scary to face, and there are a lot of feelings of powerlessness, hopelessness, and whatnot which come to mind.
Bottom line: this sort of thing leads to a lot of real-talk which I think many of use simply don't have the capacity to face. And that's really sad, because this is a fundamental part of human existence. That said, opening your heart and being present with this sort of thing is much, much easier said than done.
I'm glad I've found this forum. And if you (and I mean any of you) are feeling hopeless or depressed and need somebody to talk with about your AN adventure, please hit me up and we'll connect. I'd be glad to listen.
Liam
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Thanks everybody. I guess a recurring them is some people may let you down, but it's best to focus on the people that show up. Maybe somebody you thought was cool but weren't that close too. Maybe a family member you kind of drifted away from. When people let you down, it sucks, but give thanks to those who are there for you, and try to be there for them or others when the time comes.
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When others treat you that way they’ve actually done you a favor. They’ve shown their true colors. They never were a good friend. Having been raised in a very abusive family I learned early on how to sever relationships. They’re helping you separate the chaff. I’d rather have one good friend than a bunch of “friends” that you can’t count on or treat you poorly. Those people don’t get it - you don’t need them but they NEED you. When I see people with difficulties emotional, physical or financial I know I could easily be in their shoes. I tell others, “Careful. That could very well be a picture into your future”. I’m 3yrs post-op and struggling with the side effects and secondary issues that most of us experience. I don’t have the energy or time to deal with the Bevis & Buttheads in life. Just my 2 cents. God bless you all and hang in there!