Feeling unsupported

[Sayen]

So I understand that people don't always know how to react to bad news or what to do for someone having a hard time, but I feel like ever since my dad got diagnosed with ALS, I have been trying to hide my pain from my boyfriend. The night I told him I cried on his shoulder for a while but the rest of the night he acted like nothing happened. The next morning I was down and not as responsive to him as he liked and he got really grumpy and started banging stuff around when I left the room. Another time I said I was sad he said I should be happy that I have a good job and boyfriend and that i get to see my dad soon and that alot of people have way less than that. He's said that he doesn't understand what I'm going through but it feels like he's not even trying. My partner should be the first person to be worried about how I'm feeling and be there for me, right?
This has made me feel like I can't be upset around him or he will get upset and I don't need that on top of everything else. How have the people in your life reacted to the news? Is it normal to feel so alone in this?

 

[starente15]

Sorry to hear that Sayen. I've found that men tend to be less vocal in emotional situations and often, people in general really don't know what to do or say because they know they can't get rid of our pain.

Just this weekend, I had a sudden outburst of crying and my b/f sat down and said he didn't know how to help me. That was enough because I knew he was there. In your case, you may need to tell him what you need. For example, "I just need you to listen and understand that I'm having difficulty coping." Tell him that being there is enough if he doesn't know what to say.

I think terminal illness also brings out a lot of fear that people normally don't pay attention to. We all start to realize our own mortality and it's scary and uncomfortable.

P.S. You will have lots of support here!

 

[Nuts]

Sayen, it's normal for other people not to understand, but if I had a boyfriend who got grumpy and banged things around because I was less than responsive to him the morning after I found out my dd had ALS I'd be changing the locks on the door!

 

[starente15]

I said I was sad he said I should be happy that I have a good job and boyfriend and that i get to see my dad soon and that alot of people have way less than that.

While these statements may be true, he needs to understand the loss involved in your father's diagnosis. It's very hard for anyone involved to see the good in other things when they first find out. They go through the natural emotions of grief, Denial, Anger, Bargaining, Depression and Acceptance, often multiple times in a single day. It sounds like you may also need to educate him on what this disease means and how it will impact your father and his loved ones.

 

[scaredwifetx]

Sayen, you are going to go through a lot of emotions that he will not be able to feel or understand over the next few months. This disease hangs out in the air and is very overwhelming to the family at first. I have found that a lot of our family and friends just do not know what to say and sometimes I get upset because they do not feel the same emotions I do. I also catch my self being a little jealous because they seem to be gonig on with thier life while I am devastated. It's wrong and I know it. Not everyone reacts the same and for you the initial diagonosis is so very hard so you wil go through a ton of emotions. Your boyfriend will not need to understand it all but he will need to be there for you, even if it is silently. You can always come here if you need to vent or get help.

I agree with Nuts. If he can't handle this any better than slamming things around instead of comforting you, its going to be a long road. you do not need the additional stress right now of worrying about him when clearly he was not supportive in your time of need. like stated above you may need to educate him on the disease and let him know how you feel. Let him know how you feel because sometimes that is all it takes.

 

[Sayen]

I talked to him later that day about just needing him to be there and not needing him to say anything. I also said it scared me when people get mad and bang stuff around and he said he would never do it again. I just feel shocked that he would react this way since he's only ever been supportive of me. I got a bad flu a couple times and a concussion this winter and he was very patient and understanding. I feel like maybe ive had some resentment towards him for being cheerful while I'm going through the hardest thing I've ever faced in my life. Also he hasn't had anything really bad happen to him and seems to get stressed out about little things, which really bothers me. Maybe you guys are right about the unnessecsry stress.
We have plans to go visit my family in October so I was hoping that seeing my father and what my family has to do to adjust to his illness would help him understand. He is usually great but has anxiety problems that make him worry about us any time I'm a little cranky with him. I will have to work on being more assertive when it comes to what I need in the next little while.

 

[4tloml]

Sayen, it's normal for other people not to understand, but if I had a boyfriend who got grumpy and banged things around because I was less than responsive to him the morning after I found out my dd had ALS I'd be changing the locks on the door!

So well said!

You are going through a really difficult and life-changing situation. There are lots of bumps on life's road, though, and if this is the first big one you're facing with him and that is his response, I'm thinking it could get hard dragging him up all those hills. He's showing his character. Do you have other friends nearby who may be more of a support or grow into that role. (Besides us--because you do have us, too!)

 

[Sayen]

Actually my best friend and roommate is helpful and understands my situation as she witnessed her mom battle cancer for a long time. Also oddly enough, my ex boyfriend has been supportive as he also lost his dad to cancer so its been helpful talking to him.. Which makes me feel even worse about not feeling like I can talk to my boyfriend about it. I've known he is emotionally immature but I had hope he would understand the more I talked about it..

 

[Atsugi]

First, Sayen, I apologize for my sub-species. Here are my naive thoughts:

From my old man's perspective, this is very easy to understand. He sounds like my younger self. Very immature and not sensitive to the feelings of others. Some of us are born emotionally blind and can't even see your pain. It's like he has brain damage caused by testosterone poisoning. It affects a large number of men and sometimes there's no cure. In a sense, it's not his fault; he's emotionally disabled. So don't expect it to get better. It may take decades to cure. If he's supportive tonight, it's not a character improvement, it's a temporary burst of appearing to be supportive because he's been told to try.

This is a classic case of the woman obviously needing something, and the man is saying, "Am I supposed to be a mind reader?" Yes, everything you want him to understand must be communicated in a three step process: the attention step, the motivation step, and then the presentation with a reinforcement step.

I don't know why women sometimes don't understand this next part, but you should never even mention an ex-boyfriend, much less talk to one. While women welcome the innocent social company of both men and women, a lover of the male species is like a lion--there can only be one within 500 square miles. If he hasn't objected, he's just successfully hiding his deep desire to kill the other guy.

Some women would see this challenge as a long-term improvement project.
But remember that shaping a "diamond in the rough" requires a lot of hammering. Are you a hammer?
Good luck.

 

[Sayen]

I definitely don't think of him as a project. I've been with too many abusive people to expect anything to change if they don't want to. The reason I believed he would grow as a person is because I've seen growth in him and he has acknowledged my feelings on any issues we've had before. He sees when I'm upset and I actually think it affects him alot and he gets frustrated that he can't do anything to change how I feel in this particular situation. He's only 24 so I figure he's got some growing up to do but that could be conjecture on my part. But I love him so I want to believe it.
As for my ex, I know it bothers him so I try to limit my interactions with him. But he messages me on Facebook to see how I'm doing and I knew he had lost his father young so I asked him some advice. I live far away from my family so he was one of two people near me who I felt could have some insight on what I was going though.
Thanks for your responses, this is definitely something to think about

 

[starente15]

Love your synopsis Atsugi!

 

[SharoninAus]

Re: Feeling unsupported - some other thoughts

Hi Sayen,

I am relatively new here. My mum was diagnosed last October and now can't eat, talk or move any of her lower body.

I can relate to much of your story. I have been devastated and have watched my brother go on a 3 month trip around Australia as planned and my sister 'seemingly' cope and get on with things also. It's so true that everyone copes in different ways. My best advice (to myself also) is not to overthink that.

My husband is a "fixer"; great in a practical way in an emergency, a special squad police officer and just the person you want around when a situation can be resolved - not so great with things like this diagnosis, which he can't fix. He struggles too when I get upset because his first reaction is "to fix it", and he gets frustrated when he can't. I have had to be really clear that I just need a hug or for him to sit and hold my hand.

The more generous (& still possible) interpretation of your boyfriend banging things around when you have been not so responsive to him is that it's not a spoiled child's reaction to not getting what he wants but his frustration about a situation that he has no experience with and can't fix. Talk, tell him what you need, check your understanding of what is happening for him also - even if you have to do it initially by a letter that he can read and digest, and respond to in his own time.

Hope it helps.

Sharon

 

[Sayen]

Re: Feeling unsupported - some other thoughts

Thank you Sharon, that was a good perspective on it. Based on the fact that he basically waited on me hand and foot when o was sick in the winter means to me that he just feels helpless when it comes to this and he got frustrated. He said he would never bang stuff around me again and I feel he means it. It's hard for me to talk about my feelings and needs with people so this will take some work on both our parts.
Thank you all for the support, it helps to be able to talk about these things .

 

[lgelb]

Sayen,
I would tell your current guy straight up that you are going to need -- and therefore, reach out for -- as much support as you can get, including but not limited to your ex. If he can't deal with that now, it will be angsty later and you might as well know now.

But, like Becky, I would be heading for the exit unless he stepped up in a hurry. You have enough on your plate.

 

[chally]

sayen, listen to these wise care-givers. change the locks! it will be better for you both in the long run. use your room mate's support. love ya chally