Not sure what to expect from relationship

[nicole22]

I wrote a long detailed entry describing my current relationship and the events that led up to this point but realized it sounded like I was insane (which is actually how I feel) so I'll try and summarize it quickly here.

I'm 33 and found out this past May I had an AN. I had no symptoms other than slight hearing loss but immediately chose translab surgery in order to decrease the likelihood of facial problems. I'm relatively young and not married so facial problems was a huge concern. I had met my current boyfriend a few months prior to finding out and was not happy to have this wrench thrown into the mix. Relationships are hard enough on their own. I had surgery in September.

Prior to the surgery I would say my boyfriend wasn't the most supportive in the sense that he NEVER talked about it. He rarely asked about it and if I brought it up he usually changed the subject. I finally confronted him about it and he said he cared but never knew what to say. I tried to be very positive that the AN surgery would work out fine. Though he was not vocally supportive he did spend a lot of time with me over the summer and we did a lot of fun activities. Looking back I don't think I could have stayed as upbeat as I did during that time if he hadn't been around.

I ended up having facial weakness. I was told it's only temporary but it's been almost 3 months now and it has been VERY SLOW progress. I still can't smile at all or blink but I can now eat a sandwhich (as long as I squish it) and don't have to drink out of a straw even though it takes me what feels all day to drink something without one. My eye now waters and my nose runs when I eat. I still sometimes have trouble getting food moved over from one side of my mouth to the other. Needless to say I feel far from sexy.

Right after my surgery my boyfriend seemed fairly supportive. He would come over a couple times a week to spend time with me which really was just sitting around since that's all I could do. As time went on I tried to be as normal as I could by going out into the "real world" even though I absolutely dreaded it. The thing is he still never talks about it and he still changes the subject now if I bring it up. It's almost like he expects that after a few weeks I should be over it. I'll admit I talk about it probably more than I should be it still affects my daily life. I still hate going to bars or crowded noisy places. I'm sad a lot because of my face. When I am happy and smile I can feel that my face is still distorted and that just makes me sad again. My hearing loss bothers me sometimes when I know this is something I'm stuck with the rest of my life. Even though the surgery is over, this time after wards is so much harder than what I expected.

So my question is. What should I expect from my relationship? We were only together a few months when this whole thing started but now it's been almost a year. Is it bad for me to try and talk about it? What's too much talking about it? I can imagine that having to deal with me (and my anxiety/depression) for 6 months (even though I honestly think I've been pretty good about it) has been wearing. I can tell he's distancing himself form me now and I'm not sure what to do. Do I say good riddance and that I deserve better? Do I try and understand that he has problems too and that maybe all of this is getting to be too much for him? At this point when we hang out I can tell I have my guard up since I'm concerned he wants to end the relationship. I want to be nice to him and tell him I do appreciate the things he has done but at the same time I'm dissappointed he hasn't done more so I don't say anything nice at all.

I finally decided since things have been so hard I would just wait for his move. We hung out a few days ago and I thought things went well (I made every effort to be nice and positive) but I have not heard from him since. 

My emotions have been all over the place since I found out about this AN and they seem so much worse since the surgery. I feel like I'm on the crazy train and can't get off. 

Any advice would be great.

Thanks.

[Jim Scott]

Hi, Michelle ~

This isn't my area of expertise so I don't feel qualified to offer comprehensive relationship advice but I'll attempt to give you some direction, if that's O.K.

I would consider having a heart-to-heart talk with your boyfriend as soon as possible.  Emphasize your appreciation for him hanging in there with you and tell him, honestly, about your concerns (without breaking down, if possible).

My take - from a male point of view, of course - is that this man isn't fully committed to you but is fond of you, has compassion for your facial weakness issues but simply doesn't know what to do.  Your needs are probably overwhelming (to him) and make him feel both helpless (what could he possibly do about your facial weakness?) as well as a bit frustrated with your emotional issues (which are quite normal, in this situation).  Let him know that (a) your facial weakness is likely temporary and, (b) you're deeply grateful for his support (even if it isn't exactly what you would like it to be).  Don't try to make your boyfriend feel as if he has to choose between supporting you or ending the relationship.  Just let him know that this will pass, his tacit support (being there) is very helpful and that you realize this may not be what he signed up for but that you are deeply impressed by the way he's handled it, so far (even if that may be a bit of a stretch).  It's crucial that you're honest with yourself and understand that for a young man who is not fully committed to his girlfriend, this may ultimately cause him to reevaluate the situation and decided to end the relationship.  If that happens, I'm confident that you'll survive it.  You'll also have learned what kind of man you really want to look for as a future husband.   Frankly, even long-married couples sometimes struggle with AN complications.  Many husbands will assume that, like having your appendix out, once the stitches are healed you should be able to 'move on' and never worry about the AN, again.  Wrong.

This is a daunting situation and as a long-married (42 years) fellow with a wife who was my anchor and total helpmeet as I went through my AN experience, I may not have the exact perspective necessary to advise you.  However, you seem to be sincerely seeking some direction in this matter and although I'm no Dr. Phil, I've tried to offer you a bit of insight.  I hope it is of some help and no matter how this turns out, I wish you all the best. 

Please try to update us if and when the situation is resolved.  Thanks.

Jim    

[nicole22]

Thanks Jim. I really appreciate you providing me some direction. I felt silly asking for relationship advice on this discussion board but AN's are so mentally challenging that talking to my friends for guidance wasn't helping much. I felt it would be best to get advice from people who could understand "my side" of the story, which is only someone who has been through it.

I do agree that this was a lot to put on him and that I need to let him know what he has done is appreciated. It's also really good to get a man's perspective because men and women don't always (usually) think the same.

I have plenty of other Dr. Phil questions but I'll refrain

[It is what it is]

I agree with Jim that even long term relationships can be strained by an illness or disability.  The person this is happening to (us) may need to talk about this and process this much more often than their partner.  That is one of the beautiful gifts of this discussion list.  We have each other.  Talking to a therapist specializing in health and grief issues is another helpful resource to access. 

With caring,

karen

[mikechinnock]

So my question is. What should I expect from my relationship? We were only together a few months when this whole thing started but now it's been almost a year. Is it bad for me to try and talk about it? What's too much talking about it? I can imagine that having to deal with me (and my anxiety/depression) for 6 months (even though I honestly think I've been pretty good about it) has been wearing. I can tell he's distancing himself form me now and I'm not sure what to do. Do I say good riddance and that I deserve better? Do I try and understand that he has problems too and that maybe all of this is getting to be too much for him? At this point when we hang out I can tell I have my guard up since I'm concerned he wants to end the relationship. I want to be nice to him and tell him I do appreciate the things he has done but at the same time I'm dissappointed he hasn't done more so I don't say anything nice at all.

I finally decided since things have been so hard I would just wait for his move. We hung out a few days ago and I thought things went well (I made every effort to be nice and positive) but I have not heard from him since. 

My emotions have been all over the place since I found out about this AN and they seem so much worse since the surgery. I feel like I'm on the crazy train and can't get off. 

What did you expect from a relationship before the AN ?

I do not think an AN ought change ones boundries, has this one changed yours?

In 1978 I was originally diagnosed with MS (The medical plan I had did not have a CT scanner, nor had MRI been developed). My wife told me that I would not be able to care for myself let alone her. I certainly understand the anguish and depression that can result from the collapse of a relationship during a medical crisis. It took some two years before I went out on a date (I was still going through surgeries).

I met a lady just before my 4th surgery, we hit it off and we went to Dillon's Beach (North Shore California) just before the 4th operation. The surgeon had diagnosed the tumor inoperable at that time and this was sort of my version of going out with a flare.

I survived. 35 years later I am still alive. I still drink with straws and mash my sandwiches. If I forget I wind up wearing my lunch/dinner/breakfast. I do not like large groups, as the sound rushes in one ear and all I hear is noise. I have mobility/balance issues, facial paralysis and sometimes slur words.

The lady I met was not bothered by that and her understanding a support did wonders for my self esteem. I learned from 'Catch 22' that when it is okay to not be okay, only then am I okay. Above all it is a shared journey. What do you want from it? What will you put into it? Everybody has a right to change their mind. If you are both on different paths will you insist he change over to yours, or will you abandon yours and try to get on his ?

I think after AN it is a changed life. Life is a dynamic process. I had to make a lot of changes and try new surroundings that blended more with my new characteristics. I usually find doing new things a bit challenging, but this has gotten easier with time and experience.

In the past 35 years I have had perhaps a dozen relationships. Some more harmonious that others. Some the lady had more trouble with my limitations than others. Others have been real God sends. I have learned from them all. My current relationship has been going on now for about nine years.

Perhaps you need to suspend relationships for a while and come to complete acceptance of your current AN condition post surgery. I would not be saying that if your other was being truly supportive and understanding. I personally do not think you need additional negatives at this time. I believe all human behavior comes from love, or from fear. It sounds like both of you are not coming from love.

Only you know what you are looking for and what you will give. Love is letting go of fear.

Namaste'   Mike

[Sheila1977]

The surgery and complications are overwhelming to say the least.  Even when things go well, and its my prayer that you will start recovering faster and let's trust some of the issues are only temporary, even when things go well those around us (family and friends) don't live up to our idea of what support should be like.  That really took a toll on my emotional well being for a while and I hope you will focus on what is best for your recovery.  Whether its working on this relationship or making room for one at a later time.  I suppose only you can answer that. I have taken the long road to say, stay on the road to your recovery whether its the physical part or the emotional part, both are just as important.  My prayers are with you.
s

[Kathleen_Mc]

Nicole: I cannot tell u what to do about your "relationship" only share my experience. When my tumor was found I had been dating a man for something like 1 1/2 years, there was talk of marriage. When I was finally diagnosed with a tumor he (as others) was completely shocked, I hadn't been believed that I was ill as I had been saying for years. I don't remember us going out together between Dx and Sx, I do remember talking on the phone, and a couple of brief conversations at work, but that there wasn't much said. He never came to the hospital to see me, I phoned him a few days post op to let him know I had survived, he said he had come to the hospital on a different day then my surgery day only to find out I hadn't had surgery yet (I was on call to the OR for any available day before the fixed date) but didn't say anything more about coming to see me. Once I was home he did come and see me once, briefly and then I didn't see him in person for a couple of months (until I retruned to work) and then our relationship picked up again.....he never addressed the issue, asked how I was, cut me off when I talked about it etc.....I eventually dumped him. I think it was last year I phoned him (did a little computer research to find him),as I had always wondered "what happened", he APOLOGISED to me and told me he was so afraid in the situation (afraid to loose me, it brought out his own fears of death) that he couldn't think around me, didn't know what to do or say etc and he realised it was this that lead to the end of the relationship.
If this was a "great" relationship before try talking to him about it and see if things can be "repaired" and or go on, if not then not.
Kathleen

[Mickey]

Relationships are not easy under the best of circumstances. The strongest relationships can endure anything. If a person is your soulmate things like AN`s are just a "bump" in the road. If this is meant to be it will be and if its not don`t wait for your ship to come in, row out and meet it. Remember also as for friends, a friend in need is a friend indeed... You sound like a great person and our experiences in life have a way to make us even greater with very much to offer the right persons... Best wishes, Mickey

[nicole22]

I wanted to express my appreciation for everyones thoughtful replies. It meant a lot to me.

To give you an update my boyfriend and I ended things. He informed me that it seemed like "something was missing". I tried to be understanding and tell him that I know our relationship has been through a lot and I too throught maybe we could use a little break. However, he claims that he doesn't think my surgery has anything to do with it and that something was just missing. I took a bit offense to this because I felt it again just belittled and refused to awknowledge what I was going through. However, I can say that his "reason" has made it much easier on me to see him go.

Again, thanks for your support and telling me of your own personal experiences.

[jaylogs]

Hi Nicole!  I just got caught up on this thread. I am sorry about all that, these kind of things just suck.  You sound like a very thoughtful and caring person who is also a tough cookie when need be, so I am sure you'll go on with life and eventually find that special person for you! Take care and let us know how it goes!
Jay

[Jim Scott]

Hi, Nicole ~

I'm sorry (but not shocked) that your boyfriend decided to end the relationship.  I suspected this might be the outcome.  His loss and, whatever his reasons, you are better off knowing this now than later, when end it might be even harder for you.  His lack of empathy showed a lack of character but then, he was just a boyfriend and, as I posted in an earlier message on this thread, even long-married couples have a problem with empathy when one spouse develops an acoustic neuroma.  At least you've learned something about a quality (empathy) to look for in a future 'significant other' beyond physical attraction and some shared interests.  I'm sure you'll do fine and I hope your recovery continues apace.

Jim

[leapyrtwins]

Nicole -

I'm probably the last person qualified to give relationship advice; my marriage of almost 22 years ended in divorce 6+ years ago - which (trust me) was a good thing for all involved.  I was diagnosed with my AN 6 months after my divorce was final so obviously it didn't effect my relationship.

I just wanted to say that I'm with Jim and Jay.  You sound like a wonderful person and I think you'll find "the right one" one day.

Hang in there!

Best,

Jan