# Setting boundaries with chronically ill spouse



## fredthecalzone (Jan 7, 2011)

Hello all,

My wife and I are in our late twenties, been married two years, and we have a young daughter from a prior relationship of hers. She has strong fibromyalgia. Keeps her from ever sleeping, and she is constantly exhausted and in pain. Obviously, I haven't experienced this, but what I get is that its like living constantly on about an hour of sleep with major agony. 

On the emotional side, she started saying a while back that she never loved me, thinks our marriage was a mistake, and married hoping feelings would develop that just never has.

I love her, and I've tried so hard to care and listen... but I think I'm getting compassion fatigue. Every time anything comes up, what I hear is "I can't". 

- I can't say anything good about you (wouldn't be honest)
- I can't see a counselor. They won't understand, I don't have the energy, and I just don't care.
- I can't have sex or work on sexuality at all. Just no energy or desire.
- I often can't have real conversations about it, because my brain is too fuzzy
- I can't pursue other friendships or sources of support because I'm too tired

I could go on for a while... basically, it seems like anything that could possibly help the relationship, she "can't" do either because of her health or her lack of feelings of love. 

So usual pattern is - blowout every 2-3 months where she says she wants out. But she has no practical way to get out (no place to go, no stable job, no friends or family she can think of to stay with). She doesn't pursue it. Within a few days it fades into numbness, and we're back to being tense "roommates" in the same house for a couple of months before it happens again.

I don't believe in divorce, and want to make this work. If we were healthy, I'd be setting boundaries... But I don't know how to set boundaries with someone who is chronically ill and who doesn't love me? Any advice on how to work with this or perspective?

Thanks!


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## nice777guy (Nov 23, 2009)

fredthecalzone said:


> Hello all,
> 
> My wife and I are in our late twenties, been married two years, and we have a young daughter from a prior relationship of hers. She has strong fibromyalgia. Keeps her from ever sleeping, and she is constantly exhausted and in pain. Obviously, I haven't experienced this, but what I get is that its like living constantly on about an hour of sleep with major agony.
> 
> ...


My wife and I are in our late 30's. My wife began suffering from CFS and Fibro about 2.5 years ago.

For about one year after her health problems surfaced, she was very depressed - but she was also actively looking for treatment and the correct diagnosis.

That would be my first question for you - is your wife actively seeking treatment? There is no cure for Fibro, but as I'm sure you know, there are things you can do with diet and very moderate amounts of exercise to manage the pain. Meditation, vitamins/supplements, water therapy - are all things that have helped other people cope.

OK - for the last year and a half, my wife began getting attention from men via facebook, texting, and other ways. When this happened, her energy level increased because she became excited by the attention. A common theme with my wife that I still struggle with is that she seems to find the strength to do things she is excited about. So, while she can go out with a friend on a Friday night, she'll be feeling too bad to empty the dishwasher or do laundry on a Saturday.

Does your wife ever get excited about anything? Is her energy level always low? My understanding is that most people with Fibro - "most" - have good days and bad days. They do what they can do on good days - and rest on the bad ones. I've never heard of anyone with Fibro being bedridden, or completely helpless/disabled. But if your wife has NOTHING to be excited about, then you are probably also dealing with MAJOR depression.

The only thing that I think you could really make a case for in terms of boundaries would be to ask her to actively seek treatment for both Fibro and Depression. And even then - what will you be willing to do if she doesn't agree?

Its a tough situation. I'll be curious to see how your situation is similar to mine and how it differs.


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## fredthecalzone (Jan 7, 2011)

Nice guy,

Thanks for the perspective. Yep, you nailed it. 

1. She has sought help for Fibro for a while. Sleep studies (no help). Diet change (helps some). Vitamins and supplements (some help, some hurt). Wasn't able to stick with an exercise routine. Tried birth control for PMDD and Zoloft. Both destroyed her with side effects - made her a zombie. At this point, she's more than a little hopeless.

2. We've fought about the same pattern you mention. When she wants to do something, the energy is there. When she doesn't want to, she can barely move a muscle, by and large. So when I want to do something she "can't". When she wants to do something, she usually "can". I do trust her that she's not consciously manipulating me. But its hard to not feel like she's using her illness to control there...

And yes, there are things she gets excited about, but none of them have anything to do with me, our child, or the rigors of life... they all center around music or traveling or solitary, creative projects.

I think that's what I'm trying to figure out - what to do if her fibro doesn't improve?

Oh... and for curiosity's sake, is your wife's Mom controlling?

Thanks!


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## major misfit (Oct 17, 2010)

Here comes the chronically ill person's perspective. When my SO met me, I was already "retired" due to a disabling back condition. I hate it, but it is what it is.
I've also been diagnosed with FM and CFS (chronic fatigue syndrome). What most don't understand...is when you have a good day when you can do something, you pay for it the next. Particularly if you have CFS. It's called post exertional malaise. You couldn't move if the house were on fire. A lot of FM people deal with this also. And after hanging around some FM forums, I can say there ARE people for whom this is a disabling condition. Pain levels vary from one to the next. We are also convinced that it does get worse. We often feel misunderstood, usually because we are. I'm lucky in that regard. My SO might not understand totally what I deal with on a daily basis, but he can read me well enough to know when I'm having a flare, and how bad it is. 
This is not a medical board, but I'm going to pass on the same information to you that was passed on to me. I had what I thought was a TERRIBLE flare last spring. One eagle-eyed poster encouraged me to look at FM and CFS as a SYMPTOM of a larger picture. Something else CAUSING the FM and CFS. FM and CFS are "syndromes" because for the most part they don't know WHAT causes it. And the people on the Lyrica commercials are seriously misleading...most FM people I've known don't do that well. 
I digress...I went to my Dr. (ordinarily I'd have just suffered through what I thought was a flare) and she ordered some tests. The first thing that came to her mind (and after doing some research, mine as well) was Lyme Disease. There is a lot of controversy involving Lyme, and I have no intention of fighting that battle here. They don't call it the "great imitator" for nothing. I'm not saying your wife has Lyme, but I'd sure be curious to see what all of her symptoms of "fibro" are. Especially if she's dealing with some emotional issues as well. There are co-infections that can cause emotional disturbances. 
For you...I know how hard it is to deal with someone who is chronically ill. You have to take some time for yourself. You can't focusfocusfocus on her issues all the time. It will exhaust you mentally and physically. A lot of times the chronically ill person allows that illness to define them, and they focusfocusfocus on it ALL THE TIME. It gets old. It's hard to not focus on it so much when it affects your life in this way. 
She needs treatment. I don't know what her doctor is doing for her, but if she's depressed..she needs antidepressants. If she's in pain, she needs to see a pain specialist. There is NOTHING you can do for the fatigue, though GENTLE (non aerobic) exercise is a MUST. You can't get better from FM or CFS without gentle exercise. Gotta have it. There's no cure for either, they just have to be managed. She needs to get her doctor on board helping her to manage the symptoms. And I'd sure as hell be looking for the CAUSE.


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## fredthecalzone (Jan 7, 2011)

Thanks for your help, misfit.

Yeah, she's been missed a whole bunch. Too many people blame her for it and have lots of advice and little understanding or compassion. I know that's really hard for her to not be trusted or have her pain validated. 

She's been tested for Lymes on more than one occasion and it all came back negative. What should we be looking for?

As far as doctors go... we're both a bit gunshy. Everything has backfired. Antidepressants, supplements, birth control (for another condition) - everything pharmaceutical has had side effects much worse than the pain. We're scared of trying Lyrica / Cymbalta as both seem like stronger meds than even the antidepressants we've tried to such negative effect. I think she's just feeling a little hopeless that docs can make anything better.

When you say, looking for the cause, what do you mean? We've done much thinking on this one, but curious as to your perspective.

Thanks!


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## major misfit (Oct 17, 2010)

Standard Lyme testing is unreliable. I'm going to PM you a website to check out. If you'll join, and go in and ask questions the very dedicated and learned people will help you. Just b/c she's had a negative Lyme (no "s", btw) test doesn't mean she couldn't have it. Lyme is a clinical diagnosis based on symptoms. If she had even ONE positive band on her test, she's got Lyme. I tested positive for a very specific Lyme band. I'd have never known if not for another poster on another board.
What I mean when I say "looking for the cause", is that I believe FM and CFS to be a SYMPTOM of something else. They're not diseases in and of themselves...so what causes them? There are a LOT of viruses, bacterial infections, etc. out there that are misunderstood and not regularly tested for, and what testing there is is unreliable. I'm not one of those "hysterics", either. I believe in balance in all things. And no doubt about it, there are hysterics. But there are REAL people out there suffering from SOMETHING and there is seemingly no real cause. Or cure. It's hard to get the Dr. on board a lot of times, as well. 
But...your wife needs to do some searching, so that she can TRY to get better.


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## 4sure (Aug 8, 2010)

I understand someone being ill, I truely do. That is a problem, but the bigger problem is no love.

I don't understand why one spouse would stay, and want the other to stay in the marriage, when she states clearly,"she does not love you, and she wants out." This is confusing to me.


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## fredthecalzone (Jan 7, 2011)

I get your confusion notsure, and I agree that the lack of love is the greater issue. The trick is that working on the love seems to get blocked by the illness. A few quick reasons I'm staying:

1. Our daughter
2. She isn't healthy enough to support herself on her own and I'm not doing well enough to cover double rent / double bills / etc
3. I view marriage as a commitment through anything short of abuse / affair. Not being happy isn't a good enough reason for me to break my vow.
4. I believe love can be created over time if two people are willing to work at it

Now that said... I'm not exactly looking towards the thought of a long, loveless life as sole provider + vast majority work-doer with delighted glee, and am not seeing her willingness to work at the marriage, or even on her illness.

That's where my question comes in. If she wasn't sick, I'd start pulling back on what I invested in the marriage to match her investment. But being sick, I don't know where I can do that. I don't want to say "I don't care your legs are broken, now run!" But at the same time, its really one-sided right now and I feel upset about it.


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## MEM2020 (Aug 23, 2009)

The core issue is her not respecting your incredible commitment/support level. She should be going out of her way to be appreciative. Instead she is using her illness to manipulate you while at the same time telling you she doesn't love you. THAT is abusive. 

Don't for a moment kid yourself into thinking that emotional abuse is not physically toxic over time. It is. 

If you are avoiding conflict you are going to cause her to be more aggressive. Bad move on your part. 

Stop tolerating mean, inconsiderate, hypercritical behavior or you will keep getting more of it. The next time she threatens to end things - and she will - offer to help her pack. As for custody - she has a choice. She can legally claim to be disabled in which case she won't get custody. Or she can claim she is not disabled in which case she will be obligated to do what "able" people do. 





fredthecalzone said:


> I get your confusion notsure, and I agree that the lack of love is the greater issue. The trick is that working on the love seems to get blocked by the illness. A few quick reasons I'm staying:
> 
> 1. Our daughter
> 2. She isn't healthy enough to support herself on her own and I'm not doing well enough to cover double rent / double bills / etc
> ...


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## fredthecalzone (Jan 7, 2011)

Thanks all 

So to sum up, what I'm hearing is:
1. Keep pressing into the cause of the illness and treatment, and keep seeking root causes. One key boundary would be that she is actively seeking help for her illness
2. In the meantime, don't let myself get walked over regardless of the disease

This is really helpful - I'll press into both of these. 

Misfit (or anyone else), any suggestions or clarity on what's possible and what's not? I don't want to set boundaries against anything that's impossible to change, but I don't want to allow behavior that I shouldn't be allowing, and I'm still struggling to find the line between the two. I also suspect that there's some behavior I shouldn't be tolerating and that is also impossible to change, and I'm not entirely sure what to do about that....


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## major misfit (Oct 17, 2010)

fredthecalzone said:


> Thanks all
> 
> So to sum up, what I'm hearing is:
> 1. Keep pressing into the cause of the illness and treatment, and keep seeking root causes. One key boundary would be that she is actively seeking help for her illness
> ...


Did you check your pm? I'm curious as to what other symptoms (if any) your wife may be having. I'm not a Dr., I can't diagnose anything. I just know what myself and so many others like me have been through. 
And you're right...just b/c she's ill doesn't mean she should walk all over you. She has to take responsibility for her illness, and do whatever necessary to HELP make it better. There are degrees of FM..but caving in to it isn't going to help anything. 
You can't change her behavior, but you don't have to tolerate it. And you have every right to set boundaries and stick to them. Just b/c she's ill doesn't give her the right to lash out at you. Or to treat you poorly. I do know that some diseases can cause mental disturbances, so that's what makes me curious as to what other symptoms she might have. 
At any rate, she's lucky to have you there supporting her (in all ways). Many, many don't have that support. Take comfort in the fact that you're doing right by her, even if she isn't doing right by you (but hopefully SHE will appreciate it herself!!).


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## chefmaster (Oct 30, 2010)

fredthecalzone said:


> I don't want to set boundaries against anything that's impossible to change, but I don't want to allow behavior that I shouldn't be allowing, and I'm still struggling to find the line between the two. I also suspect that there's some behavior I shouldn't be tolerating


I would break a boundary that seems to have been set by her, and have long in-depth conversations about this whole "I don't love you" issue.
There aren't many things that will cause a spouse to openly say "I don't love you" and in my experience it's an issue that's buried deep and won't come out without a lot of prodding. 
The answer you were given was not only unacceptable but was a blanket answer that has nothing to do with the actual reason she relented on love.


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## nice777guy (Nov 23, 2009)

When your wife gets energy, what kind of things does she do? Is she doing things that make you think she could empty the dishwasher or fold laundry? Or are her favorite activities more passive?

Its kind of a catch-22 – Fibro and Depression are closely related, so you want to encourage them to do things that will make them feel better. Yet you still need help to get the day to day things done.

My wife’s mother is NOT controlling at all. She was very skeptical at first about the Fibro. My wife’s parents are both very hard-working people, so it was hard for them to accept that my wife might be physically limited and unable to clean the house or work.

Major – understand the exertional malaise. If my wife does too much, she will sleep 12 hours the next day.

I feel like my wife has ignored a lot of good advice from her doctors. She did a two week cleansing diet about a year ago and seemed to have more energy. Even if she would incorporate some aspects of that temporary diet into her normal lifestyle, I think she would feel better. She also is NOT doing any kind of moderate daily exercise. I know Yoga and meditation were also highly recommended, but she has not even tried.

Fred – Cymbalta seemed to help with my wife’s depression, and its also recommended for Fibro. At this point, she’s taking so many “supplements”, its hard to tell what does and doesn’t work. Her Psych has also expressed a concern about her taking too many meds or supplements and her body’s ability to process it all properly.

As for her saying she doesn’t love you, it could just be the depression talking. Another request you could make would be for her to attend marriage counseling with you. Doesn’t seem like too much to ask.


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## unbelievable (Aug 20, 2010)

Sounds like the bigger problem might be depression. Honestly, there are some people who simply are not physically, or emotionally able to participate in an adult relationship. These people shouldn't get married but they do anyway. Not talking about those who develop problems after marriage. That can't be helped. Those who know they can't fully participate in a marriage (for whatever reason) shouldn't walk down the aisle and promise things they know they can't deliver. It's sad for a person to be miserable their entire life, but two people being miserable is twice as sad.


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## fredthecalzone (Jan 7, 2011)

Thanks all,

Misfit - I did get the PM - thanks much! I'm checking it out and doing the research - its a lot to digest right now, so I'm taking it in chunks. Seems like it could certainly be a possibility.

Niceguy - the activities she does ARE energetic, but almost exclusively keep her at the emotional / intimacy surface. Playing music for parties, traveling and meeting new people, and gardening are three of her favorites. 

When I mention this, she says that its not ACTUALLY that she is more able to do things she wants to, its just that she doesn't tell me all the time when she can't do things she wants to do, so I don't see it as much. Hard to argue, but also not entirely sure I believe it.

Chef - her key point as she expresses it is that she is not "inspired by me" and that my love is not "strong enough". Defining what she actually means by this strength is pretty fuzzy to me. My sense is that she has a pretty idealized picture of masculinity and she feels incompatible because I don't fit it and she wants a "real man." My selfish / hopeful spin on this is that I suspect that she's threatened by me actually listening / wanting intimacy and would be much more comfortable with a guy she could be comfortably distant from.

I'm going to see a counselor today personally to see if I can't work on some of this stuff (I hear her point - I am clingy and a bit scared of being alone, and I can see how that would be very off-putting). Still, I feel like its the emotional equivalent of "if you weren't so annoying, I wouldn't have to hit you" - "if you weren't so pathetic, I would love you and not criticize and threaten to leave all the time". 

All - I can definitely see depression as an issue. I've asked her to see a fibro expert (as opposed to a PCP / general Rheumatologist), go to marriage counseling, and to stop expressing how disgusting and uninspiring I am. She's pretty hopeless about it all - doesn't really want the relationship to work and doesn't think a doctor or counselor will be able to help anything. I give it a 1 in 5 chance she agrees. Otherwise, our lease is up in a few months. We'll see.


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## MEM2020 (Aug 23, 2009)

As long as you hold on to the idea that if your marriage ends your life is ruined, you will act in ways that bring out her worst.

Being "clingy" is a choice not a feeling. You can "feel" clingy but if you "act" clingy you will kill any long term relationship. And in fact when she is being aggressive and threatens to leave - asking her "not" to is a form of clingy-ness. 

At WORST be totally silent when that happens. At best stand up for yourself which would mean telling her: "I am ok with that - if you really don't want to be here I think it is better for us to part ways". And then don't fold. Let her decide. 

Accept that you might be alone for a while it really won't be the end of the world. If you have a steady job and are a decent person you won't have to be alone for long. 




fredthecalzone said:


> Thanks all,
> 
> Misfit - I did get the PM - thanks much! I'm checking it out and doing the research - its a lot to digest right now, so I'm taking it in chunks. Seems like it could certainly be a possibility.
> 
> ...


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## fredthecalzone (Jan 7, 2011)

Mem - yeah, I'm there.

That's what has happened the last few conversations - "I'm fine if you go". And if you stay, I need you to do these things (see counselor, see doctor, and hold off on the commentary).

She'll probably go. Which is ok. I'll miss her and our daughter (her's from a previous relationship). And I'll have a lot of guilt to deal with. But I will be fine - no doubts there. Just need to grieve a lot to get there.

 She's just so #()&$#$ convincing. I feel like I've only gradually started seeing clearly the last 3-6 months... Not entirely sure I'm seeing entirely clearly yet! She can make an absolutely airtight case that 2+2=5... and usually at least one of the numbers is what she can or can't do physically / emotionally. I KNOW 2+2=4. But short of telling her she's straight up wrong about what she can or can't do, I can't make 2+2=4. It's frustrating.


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## nice777guy (Nov 23, 2009)

Do you get much time to do things for yourself?


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## chefmaster (Oct 30, 2010)

fredthecalzone said:


> Chef - her key point as she expresses it is that she is not "inspired by me" and that my love is not "strong enough". Defining what she actually means by this strength is pretty fuzzy to me.


Ok, I'm starting to understand your whole 2+2=5 problem...


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## ThinkTooMuch (Aug 6, 2010)

*Financial issues and government support*

I understand you don't want to divorce, though from what I read in your posts you are facing an increasingly unpleasant home life. Been there, done that.

Sorry your wife has FM, it is nasty, but it doesn't mean you have to put up with her. 

I know you'll miss your daughter and will feel miserable for months, please take it from me there is life after marriage, and life after divorce. It is not a bed of roses but can and will get better in 3 to 5 years in most cases.

Did you adopt her daughter? Even if you haven't you might have visitation rights, especially if you end up paying child support. It is not the same as being with her every day, returning a kid or two you love to her/their mom's sucks big time.

Your W and her child might qualify for some form of government support - SSI if she has little work history or SSDI if she has more and food stamps which in CA and CT are not small. You might qualify as well.

You need to call Social Security and local agencies before making decisions based on financial issues. I and others on a different forum have found many phone reps are very helpful and caring, though some aren't, listen carefully to the questions they ask, and phrase your answer so it is the one they are looking for - if it is accurate. For both SSI and SSDI it really helps to have documented in her dr.s' records every incident, every meeting, at every dr. visit make a note of recurring headaches, pain, falls, vision problems, depression - you name it. I did knowing my neurological condition would eventually make me sadly eligible for SSDI and Long Term Disability. SSDI approved me within 90 days, the LTD carrier approved me after they received a ream of paper from my neuro's office spanning ten years with every symptom I'd experienced in the last 8 recorded.

From Social Security's web site (The United States Social Security Administration)

By calling 1-800-772-1213, you can use our automated telephone services to get recorded information and conduct some business 24 hours a day.

If you cannot handle your business through our automated services, you can speak to a Social Security representative between 7 a.m. and 7 p.m. Monday through Friday.​



fredthecalzone said:


> Mem - yeah, I'm there.
> 
> That's what has happened the last few conversations - "I'm fine if you go". And if you stay, I need you to do these things (see counselor, see doctor, and hold off on the commentary).
> 
> ...


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## fredthecalzone (Jan 7, 2011)

Is fibro covered by SSI or disability?

We looked into it a while back and coverage didn't look terribly hopeful.

I didn't adopt my daughter. My W always felt hesitant about that... In retrospect, I think, because she was always hesitant about us. 

What does the child support / legal situation look like in these sorts of situations? I'm fine with it - I definitely want them to be ok. Just interested in what I might be looking at.


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## nice777guy (Nov 23, 2009)

Fibro can be covered by SSI. As someone else above mentioned, a long medical paper trail definitely helps.

You should be able to google and find a state child support estimator. Sounds like spousal support is largely left up to the judge. You will usually only pay spousal support for a few years if you've been married for less than 10 years. Support could be "permanent" if you've been married 10-15 years or longer.

Do you WANT to get divorced? I just wonder what the odds are that she might change her mind if you actually started packing...


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## fredthecalzone (Jan 7, 2011)

Can't deny that the surface part of me thinks it might be a lot easier...

But honestly? No I don't. I absolutely don't want to get divorced. I genuinely love her, I love our daughter, and I think we can win. But I think it takes two, and I don't think we can do it if she doesn't choose to really try.


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