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[daisyaday]

My DH has been sick with a chronic condition similar to CFS for the last 10 of our 16 year marriage. I was reading today that 75% of marriages involving chronic illness end in divorce. During some crisis training I went through a year ago for some volunteer work I was doing, we talked about the fact that most people considering suicide don't really want to die; they want the pain they are in to end but can't find any other way to stop it.

I feel the same way about my marriage. I don't really want to divorce, but I want my marriage back. The CFS, which is what I'll call it, has impacted our marriage as follows:

1. Dropped my DH's income by 85%.
2. Isolated him from me 95% of the time. He stays in the basement and wants to be alone when he is sick, which is most of the time.
3. Made keeping up the house and yard difficult. I would love to move to a condo, but he refuses. He doesn't want the potential of bad/noisy neighbors.

I think the isolation is the worst part. I feel as if I'm single and I'm lonely and depressed. I'm going to have to ask my doctor to up my anti-depression meds. I also have health problems (rheumatoid arthritis). He has so little energy to give to our marriage. I just don't know what to do anymore.

Any suggestions are welcome.

[daisyaday]

One other consideration is that he would not be able to support himself. I feel very bad about this.

[lolar2]

Is he on social security?

There are a bunch of books and websites out there for spouses of people with chronic illnesses. Also there are real-life caregiver support groups.

[daisyaday]

He is not on SS as he is still able to work part time. I did some web searching today for discussion boards but didn't find much. I guess I can look for some books, but I don't know what you do when your spouse is pretty much MIA from your marriage. What's the point???

[msmicrobe]

First, you need to decide what you want your husband to change. With chronic health issues, it's unrealistic to expect the old guy back. But what do you want from this new, current husband? What is the minimum you can get from him and feel that your relationship is worthwhile?

Then you need to decide if you are willing to follow through on an ultimatum if he doesn't make reasonable changes. If you are not willing to follow through, then you need to work on accepting the current situation. Scary? You bet! Been there... different circumstances but in other ways, much the same.

Once you know and can clearly state what you expect, you can put your cards on the table. Hopefully, this gives him a swift kick in the backside and you can begin to move forward. Expect some bumps in the road. Be willing to negotiate. But whatever you agree on is something he should be held to.... or you go back to that ultimatum. 

Hubby and I lived in Big City for 2.5 years. I was miserable. For the entire time, Hubby was "assessing" how he felt about Big City. He talked about a career change but never put talk into action. Finally, when my own job situation changed, I went job hunting in Mid-size City closer to Family. And accepted a position there. Hubby had a choice- come along or try a long-distance marriage. But after 2.5 years of waiting for him to "assess" it was clear to me that he wasn't going to make any decisions. He'd stay in Big City forever if I was willing to. He'd sometimes agree that Big City wasn't working, but never acted on it at all. So finally, I forced his hand. I had tried working with him and it failed. I had to take care of me, too. We're doing a lot better in Mid-Size City near Family. I'm close enough to see my extended family much more often, which is extremely important to my own mental health. He has realized that he's doing better here, too! But he also deeply resented me forcing him to choose like that. He once said it felt like he was being forced to choose between his job in Big City or a life with me and didn't appreciate the fact I was willing to go on without him and that I basically said "come or don't but I'm going."

And I agreed that it was exactly what I had done, and explained (again) why I had done it. He has forgiven me, but I'm sure he'll never forget. Neither will I. I was willing to follow through and make sure I was taking care of myself and our child. Yes... there was a child involved, too. But since job in Big City had insane hours and we never saw Hubby, it didn't much matter. Child saw Hubby very little there.

Hubby knows on a visceral level that I'm with him because I choose to be, not because I have to be. Hubby knows that I will do just about anything for him except give up my own mental health. I have a responsibility to the minimicrobes to take care of myself so I can take care of them. I don't like everything I see in myself when I look back on those times. But I'd do the same thing again. If that makes me a bad person in the eyes of others, so be it. I accept the consequences of those choices and am willing to admit I was far from perfect in my handling of it all. I won't deny how I forced his hand and how high the stakes were. It wasn't "nice" of me. Knowing that, I did it anyway.


You may get to the point where you tell your hubby "We either move into a condo or together, or I'm filing for divorce and we'll liquidate the assets. But I am no longer willing to be responsible for Current Home. Financially, the situation has changed. Physically, our ability to take are of Current Home has changed and I'm not doing it anymore. So you decide if you want to move with me or by yourself. Staying here is not an option because I'm not participating in that any more. You have until June 18th to decide how you want to proceed. If you have not decided anything by then, here is what my next step will be ____."

Yes, it's harsh and blunt and shakes his world. But it sounds to me like a bit of a shakeup is coming one way or another. As isolated and depressed as you say you feel, your own health is at risk (beyond arthritis). So go to your doctor, investigate some housing options, look into a lawyer, and hope that your hubby recognizes this as his wake-up call.

I'm truly sorry that you are both facing this. With any luck, hubby will snap back to reality and you two can move forward as a team. But if not, you will know that you took action and didn't just wait for your fairy godmother to magically fix it all. And if you did your best to include him, but the other half of the team didn't ever show up, it's not your fault. At some point, you have to put your own basic needs first. Counseling might help both of you. It might help you if you go alone to figure out what you really want here. But you're right- the status quo isn't working and something needs to happen. And if you are lucky (as I was), hubby will eventually realize that the changes you forced to happen benefited him and you come out of it stronger as a couple. (My own hubby now recognizes that I essentially saved our marriage by forcing him to leave Awful Job in Big City. He still doesn't much care for how I brought that about, but admits he probably wouldn't have changed until forced to.)

Good luck to both of you.

MM

[macaroon]

You say he's MIA from the marriage.  Have the both of you been to marital counseling?  I'm not sure it will help.  But if he's unwilling to go, then I don't think you should feel bad at all about divorcing him.  If he's not willing to participate in improving your marriage, then to heck with him.  No illness is an excuse for checking out that much.

You may get to the point where you tell your hubby "We either move into a condo or together, or I'm filing for divorce and we'll liquidate the assets. But I am no longer willing to be responsible for Current Home. Financially, the situation has changed. Physically, our ability to take are of Current Home has changed and I'm not doing it anymore. So you decide if you want to move with me or by yourself. Staying here is not an option because I'm not participating in that any more. You have until June 18th to decide how you want to proceed. If you have not decided anything by then, here is what my next step will be ____."

This.  Except, how clear have you been that YOU want to move to a condo?  If you used sketchy language like, "Maybe we might enjoy life more in a condo...  what do you think?", then I think you should make it clear that YOU really want to MOVE before whipping out the ultimatums.

[tolerantly]

msmicrobe has good advice.

Do not feel guilty about doing what you need to do in order to be happy and sane. Believe me, if you got run over by a bus tomorrow, your husband would find ways to survive. Life may be hellish for him, but there's really no reason it has to be hellish for you, too. And I doubt that your sacrificing yourself like this really makes his life less hellish. Pain and illness have a way of making people incredibly selfish. It's sometimes the only way to get by.

It sounds to me like the condo is not the issue and that in fact you'd only come face-to-face with the misery faster in a smaller place. If you haven't done this before, or in a while, I'd really suggest counseling for yourself -- to find out what you want from him, from yourself, from life, and why you're putting yourself through this when your marriage has been gone for a long time.

[daisyaday]

Thank you everyone. I need a touch of tough love. I think my frustration stems from a couple of basic things:

1. The amount of housework he can/will do has declined from what he initially agreed to when he became ill, due to his health worsening. Now he mows the lawn and cleans the kitchen. He often cooks, too. I can live with that, although it doesn't get done as quickly as I would like. It's more than a lot of spouses do.
2. I think this is the biggest issue for me: in the limited amount of time he is well, he spends his time on himself and things he wants to do. Don't we all? But becasue the time is so limited, little to none of it goes into our marriage.

I think #2 is where an ultimatum lies. He needs to invest a bit of his well time in us.

Thank you again for letting me vent and for being there.

[lolar2]

You know the Spoon Theory, right? Does he? http://www.butyoudontlooksick.com/ (which also has articles for spouses)

I think a condo actually sounds like something that could potentially make a huge positive difference by "saving spoons" for the two of you.

That said.... I went through some periods of time when I was pretty much bedridden. My husband and I still were able to keep up our relationship because we would watch TV together while I lay in bed or on the couch, and we would talk about TV and books and internet message boards and current events and whatever. I know other couples in that situation who manage it the same way. So maybe he actually is outright more introverted than you are and the CFS clouds the issue? OR, if working part-time and doing a bit of housework is taking up every ounce of his strength and leaving none for you, maybe he should revisit Social Security. Someone who can only work and can't manage the main activities of daily living as a result, is really someone who can't work, if you see what I mean (at any rate, I got Social Security for 16 months on that basis, so there is at least one judge out there who sees it that way).

[msmicrobe]

I've never heard of the spoon theory. I just sent a copy to family member with a chronic illness. What a brilliant explanation. Thanks for sharing.

MM

[daisyaday]

Hi Lolar. I do know the spoon theory and have lived with it all of my life. I have had rheumatoid arthritis since I was six years old. My supply of daily spoons is very limited, too.

I have tried to simplify my description of my DH's condition because the actual illness is not well known and difficult to describe. It is similar to CFS. A condo wouldn't be an option because DH has exquisitley sinsitive hearing. He is picking up custom earplugs today made by an ENT nuerologist. A somewhat noisy car going down the street is painful for him and he must cover his ears. He will not even discuss a condo for fear of noise. I wouldn't try to force that on him. When the housing market improves (ha!) we need to move out of the noisy area where we live and into a quieter part of town.

He has siad that working for him is very important as it keeps his morale up and allows him to contribute to our income, which is important to him.

I don't mean to naysay everything you suggest, I'm just filling in the gaps in my story a bit. Today is my birthday and we have had a good couple of days. He picked up a nice card for me and we are going to dinner tonight. All we be well.

[daisyaday]

Apologies for the typos. I should have run the spell check.

Blah.

Daisy

[msmicrobe]

Hi Lolar. I do know the spoon theory and have lived with it all of my life. I have had rheumatoid arthritis since I was six years old. My supply of daily spoons is very limited, too.

Would auditory integration therapy help? http://aithelps.com/  It sounds like hubby is sensory defensive. AIT has helped two people in my family. More than helped- transformed lives. It's worth looking in to.


MM

[lolar2]

I've heard good things about that before, Ms. Microbe.

What about a smaller, one-level house with a smaller yard then? Or moving out to the country or something? I'm just brainstorming-- we are in the middle of moving so I have housing options on the brain.

[daisyaday]

That is what we will eventually do (one-story house out in a quieter area). Good luck with your move! We just can't afford it right now...

MM: Thanks for the link. I'll take a look.

Daisy