Does your spouse?partner understand your Fibro?

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crickett

New member
Joined
May 23, 2013
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3
Diagnosis
01/2007
Country
CA
State
ON
Hi gang,
just wondering if anyone out there experiences the frustration as seen through the eyes of your spouse or partner?
I feel I am repeating myself over and over again trying to explain the pain and fatigue but sometimes feel that others just don't get it.
any thought?
 
I am lucky that my husband is very sympathetic/caring. He may not understand fully what Fibro is but he does try. Hubby is always watching for signs that I am in a flare or tired and then makes sure I am taking it easy and giving me heck when I over do it. I am stubborn and try to do more than I can/should a lot of the time and he is right there telling me to take it easy. Others don't get it but my hubby does and that is all that matters to me.
 
I am fortunate, sort of. My husband understands my pain and fatigue, but that is because he has seen me in full blown flare, complete with writhing, blue fingernails, and rock hard knots in my back. He has seen me getting better since we changed insurance plans so that I could seek help outside of Kaiser.

I said "sort of" because it wold have been nice for him to not have to witness my struggle. I know that he has been frightened by some of the problems I have had.

Yes, it has been that bad.
 
My husband kind of gets it. Unfortunately he keeps thinking that if I could get some more exercise, I'd be stronger and not in as much pain or muscle weakness issues. I keep trying to tell him that the muscle weakness isn't an "actual" weak muscle, but a nerve misfire and that even the Hulk could be made into a wimp by fibro, but he doesn't quite "get it" on that part.
 
My husband is great. He has Rheumatoid Arthritis and Hypoglycemia so he completely understands what I'm going through. We take care of each other when one is having a bad flare and the other is feeling better. I think it takes someone that has something like this to understand it fully.
 
When I was married my husband always thought I was faking it or I was not trying hard enough. He did not take the time to understand that I was trying and over doing on everything just trying to please him. It was one of the reasons we ended up parting ways. He left everything in my hands and I could not do it all. I went from having a highly successful business to not being able to work at all. It might be that some if not all of us that have it were over-achievers and we take or took on much more than we are truely able to do. After a time our bodies just can not stand the strain and fibro steps in too make our lives pure misery.
I wish my husband would have been much more understanding and taken time to listen. We had a good relationship while it lasted. So some of us are very lucky and some of us are not doing so good with husbands or partners that just don't get it. :)
 
1sweed, I had a similar problem with my ex and him not believing my pain.

When my fibro started I was with my (now) ex. He saw my condition literally suck the life out of me gradually for over two years. During this time I had not been diagnosed, and we didn't know why I had all these worsening problems. He had a very difficult time sympathizing (or believing) with my pain and it changed the entire dynamic of our once loving relationship. He got frustrated with me since I just would not get better, and our intimate life suffered since he just saw me as a "sick person". He grew to resent me, saying "its all in my head" when blood tests were negative, he called me lazy when my fatigue was bad, and when we fought he would say in anger that he didn't want to be with someone who was going to end up in a wheelchair at this rate. Needless to say we didn't work out!

I'm with someone else now and I was diagnosed a few months into our relationship. Since then he is always asking me how I slept or how I am feeling today which I think is really sweet. However, I think he has a hard time hearing about my pain, and he usually cuts me off to tell me everything will be ok. He even tells me that I'm beautiful when I break out in rashes.

I know I'm lucky now, but a part of me is still fractured from the painful things my ex put me through. I just hope my current boyfriend can stay as supportive as he's been, and doesn't start to resent me.
 
All kinds of relationships here, I see! I'm glad to hear that some have supportive partners who are there... whether or not they fully understand what's going on with the fibro. Understanding is so difficult for anyone who hasn't been through it.

And then there are the partners who just don't get it at all... maybe some of it is fear of having to watch what's happening before their eyes. Also sounds like there's a case or two of selfishness because suddenly everything in their world isn't perfect and they go into the blame game mode. I guess that old saying "it takes all kinds" is very true.
 
I think if you've never experienced an illness like this before, it would be impossible to imagine exactly how it feels, but a bit of empathy can go a very long way! Some people can be very closed minded about things, they don't want to know or understand. There's also a fine line between understanding and supporting, vs pitying, and I guess some people don't cope well with being put into 'carer' mode either.
 
Sometimes I get really aggravated or feelings hurt & say........I wish for one day that you could feel what I feel! Just one day!
But...I don't mean it! I don't wish this on anyone! Not even for one day!
 
My partner is understanding but dosn't quite get it. He suffers pain and fatigue himself and gets that part of it but dosn't get the fibro fog and lack of ability to get things done as he can push through his pain and fatigue most of the time. He also suffers anxiety and understands that it happens at times with no known reason. We have a good and loving relationship and he dosn't get angry if I don't clean the house for days or just sit all day while he is out working.
 
I can say I have a great husband who is my rock! But, sometimes I have to explain why something does or does not work. I think he really just wants to do something! He has had two angioplasties with stents and I really took care of him...even when I hurt and could hardly work. Our philosophy is that the two of us together are a gazillion times better than each separate. I do have to tell him not to look so sad. It is interesting Q because I had a friend whose husband left her because of it. He was always on the go and she was always more laid back.
 
No, I don't feel like my husband understands at all. Unfortunately before we were married he had his sister, who claims to have everything from fibro to cancers, say that she suffers from it. I know she doesn't. It is some thing that she says to get attention and gives reasons to be lazy. From him getting this impression of fibro from her and because I am lucky enough to be functional, I don't think he understands the seriousness of it or when I over do it and I am really in pain what it feels like. I have flare ups especially if something is going on that causes me extra stress and I will ask for a back rub or to rub my hands and arms that are greatly affected by it and I get brushed off. It's very unfortunate but people like her have given what we live with on a daily basis a bad name and a bad image. The only person who understands me is my mother because she lives with it as well.
 
I am one of the lucky ones that has a very supportive husband. He always helps me up and down the steps, and does the things that I am it capable of doing anymore. I do the housework as much as I am able, and take care of the finances, which is his shortcoming, so we are actually very good for each other. He is very even tempered, and I could not have found anyone that is easier for me to live with.
I don't think he really understands what is going on with my body, but he sees that I do my best to help with everything, and he knows that on the days that I don't do things, I am hurting really badly.
 
Hi gang,
just wondering if anyone out there experiences the frustration as seen through the eyes of your spouse or partner?
I feel I am repeating myself over and over again trying to explain the pain and fatigue but sometimes feel that others just don't get it.
any thought?

I wish. I can't even get my Fiance to READ about it. he seems quick to tell me when I am effecting him and our daughter negatively. He was amazing when he came to the appointment where I was officially diagnosed, but that seems to be where it has ended. We are probably not far from ending either. I wouldn't blame him one bit for leaving. Not one bit!
 
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