Has Your Marriage Been Damaged by Fibromyalgia or Chronic Fatigue Syndrome?

My ex took off with my son. She said she couldn’t handle being married to somebody who is sick.

My husband and I met when I was a senior in high school and he was in college. Looking back, I had some symptoms as a child even, but it was during the last part of my junior year that I got really sick and never got better (though it wasn’t till several years after graduation that I got a diagnosis). So, yes, he knew I was sick. He wanted to take care of me, though, and we got married soon after I graduated.

However, it did put a strain on things. The fatigue and the vulvodynia pain made sex difficult. The antidepressants I was put on for the fibro pain seemed to permanently kill my libido – on top of the pain and fatigue. He wondered if it was him. He’d never been with another girl. He cheated. Not “all the way”, but with two people I thought were very, very close friends. He said he loved me and would still provide for me (I’ve never been able to hold a job), but that he wasn’t “in love” with me.

If ever there was a time I thought my life was at an end it was then. But I told him he’d earn his way out of this divorce by going to marital counseling with me. He did go. We worked hard on things and it was difficult and painful. It took time to regain what we had before, but I’m happy to say that our relationship is better than ever.

It’s still hard, though. Our sex life sucks. That still weighs heavily on both of us. We’re in debt from the medical bills and have to live on his income alone. And I know it hurts him to see me in pain. But, we’re together. And that’s what matters most to us because we know we can get through anything together.

I had a life long marriage I thought. I worked, did all the cooking and cleaning and planned to have kids. Cancer struck me at a very young age of 28. Before I could recover, I was in an auto accident causing spinal injury, vertigo and Fibromyalgia. Our 18 years together went down hill form there. No one believed or supported the Fibromyalgia theory and said I was just depressed and “get over it”. I am not one to sit around, mind you. I have always worked 24/7.

In going our separate ways I have found a true companion that is very supportive with my conditions. Something I never thought possible. I think it just takes that special someone to understand what we go through. Too respect and appreciate how hard we fight everyday to just get through the day. Good and bad. I lots any thoughts on having any type of relationship with fibro. Now I know others are out there. We must not loose hope. I wrote about this in my blog:

http://justbreathe234.blogspot.com/2009/10/fibromyalgia-and-love.html

I also had cancer young, age 24, then rheumatic fever, age 26, and was diagnosed with fibromyalgia at age 28. I got married when I was 21 so all of these illness put a large strain on our relationship. (I am now 34) Like the others I “used” to be very active, working full time, riding horses, swimming, hiking, ect. Now I do very little. Our sex life has suffered which frustrates him a lot. I have no libido, no energy. I make a big effort for him in this area but he is still not totally satisfied. He has questioned the severity of this illness a few times and accused me of faking it to get out of doing anything. We have considered divorce a couple of times due to his unhappiness. It’s been very hard on us but we have taken a vow and we both intend to keep it. We are both working very hard now to keep realistic expectations in our relationship and accept things as they are. When it comes down to it, neither of us would be happy without the other, so here we are.

Yes, I am surprised we did not discuss this all earlier.
It is so important!!!

If one spouse is really sick, chronically, cannot work, and either due to pain or meds has”libido” issues…., Off course it is very very difficult!

I have been married 22 years. And my husband knew that something is not so okay with me healthwise, but there was no name for it and it was mild in comparison to later! We had beautiful kids born and then his pressure and real financial pressure made me start working….I tried many times until i finally and with increasing age/illness realized I simply cannot. I do all the household things, and more important I did/do everything with regard to the kids. Still he always made me feel guilty, well let’s say for 18 years.
He always said how he carried me on his bag his whole life, he called me a parasite and things like that.
At the same time he has been nice at other times. But the guilt settled in deep.
Obviously, he sees himself as a victim, too. Since he is the only one making money (as I said I do everything, I take any pill I have to take to get up and do things).
And I am not even from this country, I am a legal Immigrant, well, from Europe, I came here for him!
The sad realization is, that one becomes dependant on the mercy of others! Maybe one is lucky, maybe not.
Maybe one is even lucky to live in a house and not in some kind of home….what a nightmare…….
As far as intimacy goes, I do anything I can. With pain and often almost with tears.
However, it could be much worse. Thrown into the streets would leave me I don’t know where….i cannot stand up for 8 hours or think for 8 hours or write and listen etc…
So then, I am lucky to have a home to live in, to be able to rest when I absolutely have to, I have the expensive health insurance we pay as self-employed, and better said our homelife, our kids, they have a better life. They have a home to come to which I alone could not provide.
So yes, the marriage held up due to mutual dependancy
His is one of obsessive possessiveness or love as he calls it, and mine as mentioned. And a deep feeling of being indebted to him. At the same time I am repulsed by the treatment he gives me and the indifferent cruelty he displays. On the “bright” side, I don’t fear that he is leaving me.
I can only hope that I would have been a nobler person would it have been reverse.
I bet you there are many cases like mine. So is life. There are also wonderful husband, spouses, in such situations, they are probably more likely to post, as they do not have fear. But this was very important to me. It really shows a dilemma of and in many families…I mean, there are several other illnesses just alike. It is by spirit and by heart that I live by. God bless you all!! And hopefully we have found a solution for any future young girls/women afflicted with these challenges.
It is all very very scary as what the future holds for older people with bad chronic illnesses…We, they, need a home, food and meds insurance and other things. Whom do we ask for that? There is no place in this world were I would like to go, and with a feeling of entitlement, could ask for anything!! No such place!!!
Hold on to someone who loves you, anyway, and who is kind and calm. And try to give to that person in any other way you can. Let them know that you understand that it is difficult for them, too! Don’t allow the illness to rule the house, or better said, don’t become filled and voice self-pity more than occasionally. Understand that everyone else in the house is entitled to having fun, to have a normal life and looking forward. They are the one that might help look after you later! Be greatful and don’t whine unless on blogs, to girlfriends or to truly kind female relatives!
Realize how much worse it could be? Consider twice before you decide, especially if kids are involved!! Do we want to hold them back? no!

I’m not sure why this is limited to marriages.

What about those of us who were single when diagnosed? My experience has been that just trying to date is exhausting. My one relationship since diagnosis endured for a year only because he lived out of state for a few weeks and then came to visit. I used the ‘away” time to recover. Then he stayed away for six weeks and I realized how much of a strain his being around was on me and I ended the relationship.

I feel like a nun now, dedicated to things other than personal love relationships. Rather sad, but there it is.

We’re in the unusual (and very unpleasant) situation of both of us having these illnesses. We both got glandular fever when we were at Uni (early 1980s).

In the late 1990s I was diagnosed with FM (now fairly well controlled). About 5 or so years later my husband developed very severe CFS, and later Polymyalgia Rheumatica. His illness has been much more severe than mine, and he’s been largely bedridden for the past few years. So while it is HUGELY frustrating, and most of the load of running the family falls to me, at least we understand each other, and don’t doubt our conditions.

Our daughter also probably has FM (and type 1 diabetes) and we suspect our son has CFS as well. Which really makes me wonder about infectious agents!

Getting mono at 47 and then being diagnosed with CFS right after that has really changed my life. I was single (well actually divorced, but I had been divorced for about 17 years, so I felt single), was working, and was out with friends and just enjoying my life before the mono.

After getting better (that certainly is a question), I returned to work, where I told my bosses I couldn’t continue the 50 plus hours a week. I was a business analysis for a major insurance company. But they didn’t like hearing that, they wanted the old Karen that did everything, worked around the clock, to be working, not the new Karen who was still trying to find her way back.

To make a long story short, I eventually had to come out on short term, then long term disability with my company, was terminated, but was lucky to get Social Security benefits.

Now, most of the people that I hung with at work, no longer hang out with me, I very seldom go out, and forget going out on dates. It has been 10 years since I first became ill. I hope to find someone someday who would understand what I go through, but until then, I will just keep being the me, that never really changed, except for my energy levels. I am the same happy person, who loves life, but just has to take it a bit more easier than I used to!

I had been divorced for 2 years when I was diagnosed. I think the stress of the divorce & the responsibilities of my teaching job contributed to my illness.
I lost, what I thought was,my best friend. Obviously she wasn’t though or she would have stood by me like my others have. When I was no longer able to do all the activites that we once enjoyed I started hearing less & less from her. It really hurt me but I had been warned about her from others & just didn’t think it would happen to me. I learned who my “real” friends are though & that has been a blessing.

During the first 20 years of my adulthood, I was in 5 auto accidents, none of which were my legal fault.
By 1989, I was in bed 90% of the time. We had 3 kids
who were by then in high school.I had done less and less in the house in order to meet what they needed. My spouse was constantly displeased with me and condition of the house. I tried to explain my symptoms but it sounded like cop out to him.
In 1989, I read in paper about a health seminar and I got a friend to take me.. Bottom line, I eventually was
Dx’ed a few weeks later. The doc sent me to rehab
at a hospital and I got on my feet again with
meds and muscle improvement. I coped at about
50% of former youth level for years. My husband
came to age of retirement. After about 2 weeks at home, he came to me one day and profusely and seriously apologized to me for ever being insensitive to my condition.
He said he had no idea what my life was really like
until he saw me 24/7. Later my husband
had heart attack/surgeries, both hip replacements,
and long treatment for prostate cancer, kidney
stone surgeries, and knee surgery. He is in pain
24-7 and they find no RX that helps.It was from
birth defects and injuries in the Army. My ordeal
had prepared me to understand and be sympathetic
and helpful to him. And he to me also.
Some people mentioned sex.. what is that ?, It left
our home about 3-4 years ago.. but we like TVnbooks
and after especially great home cooked soup,
we look at each other and ask “Was it good for you?”
We remember our wonderful love life and miss it but
our daily pain stops any efforts. What counts for us and held us during the rough times is to forgive always and extend precious love.

I meant to say we are about to celebrate
our 43rd anniversary and closing in on age 70.
We plan to make it to 90’s like our
parents and grandparents.

Blessings to you all.

After reading all the comments left by others, it just breaks my heart to know others suffer, as I do. I always say I would not wish this on my worst enemy (which I hope I don’t have any), but I would sure like each and every person who sneers and says it’s in our heads to just live with it for one day, so they would know what we live with everyday of our lives.

I was diagnosed with fibromyalgia in 1998 and was married shortly after. I had a radical hysterectomy in 1996 due to endometriosis. In 1997 I suffered a spinal cord injury at the factory where I worked, which caused me to have 3 ruptured discs in my lumbar region. The doctors I have seen all agreed that if I were to have surgery I would have 80% chance of being paralyzed from the waist down, so they advised me against surgery until I was no longer able to walk or I wet on myself. Me and my twisted sense of humor said “Oh, now that’s somethin’ to look forward to.” I try to keep a positive attitude, but quite often the tears of a clown spill over. In 1999 on Memorial Day my husband had his first heart attack and collapsed on our kitchen floor. He has had 3 different surgeries with stents placed in valves each time and a gallbladder removed. He has bouts of depression, since his first heart attack. If it wasn’t for God being the head of our home we would not have been able to save our relationship, but we are both survivors and put our trust in the Lord Jesus Christ.

My daughter was 14 when I was injured and it hurt me to see the sadness in her eyes, she longed for the mama she had always done everything with. I had always worked hard to insure she had the best of everything and then I couldn’t no more, that was the hardest thing of all to me. I never excepted help, I always worked and provided for my child. She looks at my husband, her step-dad, as if he is her real Dad, he took over and made sure she didn’t do without. She is 26 now and has given me two handsome grandsons. She, her husband and boys are moving into their new house next week. I’m so very proud of her, as she was so strong and helped me when I was no longer able to do many things. God has blessed me and I will not let these awful conditions….fibromyalgia,arthritis,CFS, IBS, vertigo, migraines, high blood pressure, high cholesterol, TMJ and anything else they throw at me steal my faith in Him.

I have read a few of the stories and it saddened me. To think that we all feel so helpless and this was due to illnesses. I noticed that a lot of us had cancer, back injuries, and mine was pneumonia that I could not get rid of. I have been married 38 years with two grown boys. I have 5 grandchildren. I thank God for all of them. One of my boys has a real hard time accepting that the Mom that raised him is no more. The other is more accepting. My grandchildren do not understand. I keep a journal to help them someday understand it. My husband has been the hardest of all. He has been diagnosed with bipolar. He was hurt at work and no longer able to work and the bipolar came out. He could not understand how I felt until he had a case of gout. With his hurt (at work) foot, he developed arthritis. I have osteoarthritis and am developing rheumatoid. All of my diseases are heredity. He has been a lot more accepting with his own problems. Our sex life is zero. There is none. I miss it but not to the point that I can do anything about it. I just want to say “hang in there” and with God’s help, we will all get through it.

Popcornlover, I can relate……although in the exact opposite way….the only relationship that has worked out at all since I got sick was with someone who lived one breezeway away from me in the same apt complex…..there is someone else who is interested but even the 25 minutes away that he lives is too far – I haven’t seen him in 6 months bc I have not been up to it

….with someone so close, it was possible to hang out on the spur of the moment and I didn’t have to worry about not being able to make it home…..and at the same time he was not actually living with me, so I had my own space to sleep and have peace and quiet

when I tried to date someone who lived in another state, his visits didn’t allow me any peace and quiet and alone time….way too hard

the breezeway neighbor has moved away and I knew from the start that he was going to be moving eventually…….it is impossible for me to manage to have any real relationship with him now, but even if he were still living there, I would have had a real hard time justifying taking it to another level bc I am so limited – I don’t feel like it would be fair to anyone to feel like he has to take care of me, himself, the financial situation, etc…..a marriage is supposed to be a two way street and I would not be able to contribute much at all – I only got involved with him bc I did know from the start that it was going to be short term

the thing I have wanted the most as far back as I can remember is to be married and have children and thanks to being this sick, and having been this sick during prime child bearing yrs, I don’t think it will ever happen, barring a miracle cure

Illness affects every stage of a relationship whether dating, engaged or married. It also affects everyone that is part of that household and extended family. I think it is important for couples to not let the illness cause them to treat the other spouse in a mean manner, but have compassion and patience because they did not choose to be ill. They are dealing with the best way they can and show them genuine love.

FMS most definitely contributed to the breakdown of my marriage, although it was also exacerbated by the breakdown of my marriage.

Part of the issue was that he thought I was fragile. And I was to some extent, but just because I was hurting it didn’t mean that I didn’t want ANY sort of intimacy.

And he was okay sometimes when the house would be a mess because I wasn’t able to stand more than 5-10 minutes at a time… he wouldn’t do anything to help keep it from getting that way, but he wouldn’t harass me about it. But he’d finally pass his tolerance point and then make things a million times worse for me by grabbing bin liners and just grabbing whatever hadn’t been put away properly and start throwing it out – it made no difference to him what it was. And we couldn’t afford to replace it with me unable to work – so not only would it cause unthinkable stress and make my flare up even worse – the only way to stop him from doing it was to force myself out of bed and do it myself. It wasn’t the sort of encouragement I needed at all. Encouraging me would have been ‘I was thinking about spending a few minutes tidying up – are you up to working on it together?’ There are things I can do when I’m sat down, there are even things I can do when I’m in bed, but sorting through a mountain of mail when it’s 2 rooms away and moving is agonizing isn’t going to happen. And the last thing I’m thinking about as a way of distracting myself from the pain is tidying.

Splitting up with him has had it’s good and bad sides, and by no means was fibro the only cause. It most definitely played a big factor however, as I was ‘broken’ and unable to be fixed, so he started seeking intimacy elsewhere and spending as little time at home as possible so he wouldn’t have to deal with the clutter and untidiness. The good thing is that now I’m living on my terms. No one moans at me when I’m in so much pain I can’t sleep till exhaustion hits and no one moans at me when I sleep most of the day away and no one moans at me because the dishes haven’t been done and no one lectures me when I’m hurting too much to cook and opt for random foods that don’t need much preparation. But it’s a lonely existence.

I did date someone for a while, but I think he didn’t realise just how bad it could be until he found my crutch. I don’t keep it out in the open, but I do keep it within reach in the places I’m most likely to need it. I avoid using it unless I absolutely have to – but that’s hard for people to believe. And it’s hard for them to believe that you’re not just lazy and hard for them to understand that ‘going out’ requires a military operation and a lot more planning and consideration than for a ‘normal person’. And I have a first date next week with someone I’ve never met before and I’m still trying to work out how/when to bring it up.

Fibromyalgia is not allowed to define me as a person and I’m determined to find someone who puts me before my illness.

I used to do everything around here but as the FM got worse my husband started doing more and more. I think its helped him see how much I did do while he was at work all day. I think if a marriage breaks up over something like FM then the marriage wasnt very healthy to begin with. Too many people bail out of marriages at the first sign that things are not perfect. Our society throws things out and gets new every day instead of fixing what we have. What a shame.

My husband tried to be understanding when I was first sick with CFIDS and FM but sometimes he too would not fully understand. He saw me when I was less exhausted and in pain trying to catch up with stuff around the house but did NOT see me in bed during the day when he was at work. He did read Hillary Johnson’s Oslers Web when I was first sick so that did HELP him understand far more than if he had not read her book.
When HE got sick I took him to dozens of doctors and they kept saying he was just burnt out. I knew the symptoms of CFIDS and he had them. So, I “gave” my husband CFIDS and now he is on the couch 24/7 and feels very sick. He has apologized to me many times that he did not fully understand how bad I felt and esp. now that I, with severe CFIDS, am trying to run the house and keep things up. What ever it is that we all have IS contagious. I don’t care what the doctors say. If you live with someone long enough, the chances are pretty good they too will get sick. My husband lived with me for 12 years while I had CFIDS and at that point HE got sick. He was also under immense stress and so his immune system was likely in trouble and whatever I had moved over to him. So, here we sit (lay), two sick people with no energy to do anything. This is a 180 degree change for both of us. We both were hyper, driven Type As and got done in one day what others would take many days to do. Now, if I can get one thing done in a day I am lucky. If I can stay awake and away from the bed and NOT sleep 18 hours/day I am lucky.
My illness destroyed our finances and put the financial burden on my husband. That wasn’t fair to him or to me (I killed myself to get two graduate degrees and was about to start on my doctorate). But I must say he was pretty good about most of it and did try. Sadly, his being sick made him understand all too well.
It is well past time to get rid of Dr. William Reeves of the CDC/CFS program. Had the CDC not killed off Dr. Elaine DeFreitas study on a retrovirrus back in the mid/late 1980’s, WE ALL might not be so sick. Also, the cancers and possible other diseases may have been helped or even cured if this retrovirus had been studied since the 1980’s. Those involved in the cover-up at the CDC against CFS need to be put in jail. Reeves needs to be put in jaul NOW. His CDC contractors, ABT Associates and Emory University Mind-Body Program need to be put in jail.