How to ask spouse or sig. other for more help/input with docs?

Discussion in 'Fibromyalgia Main Forum' started by 2sic2mooov, Nov 20, 2008.

  1. 2sic2mooov

    2sic2mooov New Member

    When you have this disease so long, it seems those around you just get used to you being sick so they kind of just give up. I have been angry with my husband, well mostly hurt, that he doesnt take the time to help research and find answers WITH me or FOR me. He is one to go in to the doc offices and just shake his head in agreement with everything they say. When the docs have no answer or advice or tx for me, he just is OK to live with that. This is really hard for me because I have the type of husband that gets VERY proactive in things he is interested in. He spends hours and hours researching his hobbies....gets almost drunk with excitement about the things he loves. And when there is something that needs to be fixed, he will go to the ends of the earth to learn how (or run around trying to find a replacement.) Hmmmmmmm....should I be worried? (tiny little laugh).

    Lately when things have been pretty rough with me completely down with this, I have asked him why he doesn't help research and join in my fight....OUR fight. I feel like he has just abandoned the whole thing. This has impacted him and the rest of the family SO much. We have lost my income. He has had to do so much more as far as shopping, etc. But for the most part his life is the same. He has work. He has hobbies. He has a family. I just want him to know that just because HE has settled into being almost OK with me having this illness, I am surely not going to go down without a fight and I WANT MY LIFE BACK!!!! How do I get it through to him that I need his help in advocating for me and helping me to find answers?

    I have even discussed the fact that if one of our children were sick with a debilitating disease, he would be scouring the earth for help and looking for a cure. This is not a man that is ignorant or meanhearted or simple (Ok sometimes he can be clueless), so why is he so nonchalant about me getting and finding the help I need and HOW do I get him more involved without being whiny and being a B?

    How do I get over the hurt that he maybe just doesnt care or has become used to me being sick?
  2. klcooper

    klcooper New Member

    I may be wrong here, but I think he's scared. Sometimes getting too much information scares you and it sounds like it's that or he's in denial about it at this point.

    I've had this happen with certain things with my husband and he admitted later that he was scared. He's not that kind of guy so I thought he didn't care and I was frustrated and hurt too.

    I don't have much advice for you, maybe ask him how he feels with all of this going on.

    I can relate to a certain extent, I deal with FM/CF and have had alot of health issues over the years, now I know it was all from FM. DH kind of zoned out with this and later said he was scared that I'd die in one of my surgeries and he'd have to tell our kids.

    Men have to fix things and this is something they can't fix. I think he may feel helpless because right now there's no cure for what we have so he doesn't know how to deal with this.

    Sorry I don't have more advice, hope he does open up! I'm here if you need to vent!

    Sending Hugs!!
    [This Message was Edited on 11/22/2008]
  3. Empower

    Empower New Member

    I feel the exact same way

    Very hurt and disappointed

    If the shoe was on the other foot, I would be doing everything in my power to come up with answers and solutions
  4. 2sic2mooov

    2sic2mooov New Member

    Sometimes I just feel like he has gone on with his life stuff. I forget he has some of the same fears I have. I know men mostly don't like to show this so they stuff it. But it comes off as indifference and it does hurt.Thanks for your perspective!
  5. FMsaddenedspirit

    FMsaddenedspirit New Member

    My husband also comes off as indifferent at times,, he is so lost with this DD Fibro and all that comes with it.. he cares but is lost as I am at times... its no use taking him to my Doc Apts as he does not know what to say ...

    I have found that at times when he is comming off a little angrey , most times he is hurt about something.. I have to really drag it out of him , he is not good with emotions , as most men seem to be. ( no disrespect intended guys ) as he gets older it gets better LOL ..

    I love him to no end ... I have Fibro , CFS , Arthritis , ect ect ect . so yes its hard to live with me... he has to do more around the house and most times even grocery shopping by himself , as like last weekends grocery shopping I was in tears by the time we checked out .

    Hang in there ,,, I'm sure he really does care, but is just lost of what to do , as stated there really is no cure to what we have .. and still lots of Doctors don';t even understand

    I try to keep my symtoms to myself and my journal , its just too much. I don't want to burden my honey with it all... he see's how I am and thats hard enough ... I have had him read a weeks worth once just so he could get a real good idea of what I go through,, and now ,, well he is awesome .. I truly am lucky ..... as I am sure you are also .. sounds like it anyway

    he is probely just scared ,, hang in there honey !

    Prayes for a good day
  6. Janalynn

    Janalynn New Member

    Hi there!
    Like the others, I have a wonderful husband. He is patient, caring and loves me very much. I don't think he has ever researched on thing on this DD. He relies on me to do that. That is okay with me. As long as he is supportive of me, that's what counts. I share what I learn with him and give him new perspectives on things.

    Sometimes, although we hate to do it, we have to sit them down and TELL them what we need from them. We really want them to know, but they don't. So I would very unthreateningly tell him what help you need, what you would appreciate, what it would mean to you - to both of you, to your lives etc. if he would help with a., b. and c. Then ask him how he feels about all of this.

    WE don't know what to do - he probably doesn't either. I'm a 'researcher' by nature. My husband is not, but he'd rub my legs in the middle of the night if I needed him to. He'll come to any doctors appt I ask him to come to.

    You can easily get your point across without being whiny or being a "b". Talking. Calmly. Just communicating. We've had better communication since I've been diagnosed. Whether he wants to hear it or not, I share what I've learned, what I've read etc. Somewhere he's hearing it and he'll process it and recall it when necessary.

    I'm sure he cares. He's probably trying to come into the 'acceptance' phase. There are many phases for both us and our spouses and we cycle through them several times - not just once.

    Talk, talk, talk, before you feel yourself drifting apart and feeling resentful. Accept his limitations. Decide what's most important to you and compromise.

    Good Luck to you - you're lucky you have what sounds like a great husband who does love you!
  7. 2sic2mooov

    2sic2mooov New Member

    Thanks for input. I guess i jsut want him to help me fix me. and he thinks that is the docs job. i don't think he gets that WE have to do most of the work to find things that might help us. he will be happy to jsut let it go and one day bring home the headlines that says READ ALL ABOUT IT---NEW CURE FOR CFIDS! He will have to have the proof and only then will he be on the same page as he is a "science guy" (engineer) and until something is proven and all worked out, he just wont trust it.
  8. Sun_Rae

    Sun_Rae New Member

    Well, as much as they may be this way, if they are supporting us (compared to the rest of my family), I'll take it!

    I couldn't believe your post 2sic2mooov. I felt like I was reading my own journal. I've often wondered what to do myself. My hubby is way supportive of whatever I want to do to try and help myself, but he, too, won't do the research. I don't get it.. And he's the one with the Biology degree. But, sigh, I deal with it because he's the only one who gets me and refuses to leave my sorry rear-end even though I've told him he'd be better to move on.

    But I've pegged my guy. He just doesn't know what to do. I will have a wo-is-me break-down and he just stares at me while I whimper. It's like he's as lost as I am. I feel for all involved. It's so tough sometimes.
  9. lrning2cope

    lrning2cope New Member

    are really a treasure. Even if they don't verbalize , it is nice to know that some of you have men that support you in other ways.

    From what I have heard , men are "fixers" .They translate your needs to be something that they should be able to fix. Maybe they don't research because they have seen you being so discouraged when you can't find a real , concrete way to recover. They don't research because they don't think the research will lead to them being able to "fix" you and your DD.

    Just a thought. I am in no way an expert on men. In fact , I am kind of perplexed most of the time as to where they are coming from . I just have seen that many men are "fixers"

  10. Bunchy

    Bunchy New Member

    As others have said, men are "fixers" If they can't fix something, they give up quickly.

    My DH is mostly supportive both emotionally and around the house etc but he also has never researched my illnesses or even looked at the diagnostic criteria etc. He will also agree with docs even if they are talking rubbish (which in the UK they frequently do) so I go on my own now or mostly I don't go anymore and just ask for repeat scripts as needed.

    I do all my research and I talk with him about it - he will listen and give me money for a new supplement regimen or whatever if I want to try it.

    He supports me but he knows he CAN'T fix me because there are no fixes for us at the moment. He knows with all my years of research and the medical knowledge I have gained that if I could be fixed, I would be by now.

    Keep doing your research and tell him about it and lean on him for support - that he is still around is the main thing. Many people don't stick around when their partners get sick with diseases like ours.

    Hang in there.

    Hugs Bunchy x
  11. findmind

    findmind New Member

    My sweet gentle loving partner did not want to know a thing about my illness. It scared her half to death when I had serious problems and had to be taken to the ER.

    Then she got it.
    Then she said, "Is THIS the way you feel?"
    Then she said, I'm so sorry I didn't understand.
    Then we became one: what one couldn't do, the othe did, and vice versa.

    Although I wouldn't wish this on anyone's partner in life, I found out that is the only way the "other" can understand fully, and it is a known fact that partners to "contract" the illnes or a variation of it sometimes.

    After 10 years of of both being very sick, and 23 of life together, we have weathered the storms and grief and anguish over the other's pain and debilitation. We are one now.

    I think the other posters are right, based on my experience; the "other' cannot understand and if they can't fix it, they have to remain aloof from it and in that manner they can control their anger/rage over the condition they see you are in.

    I would think the PWME/FM has to learn to ask for specific help, as other posters say, for they are feeling as lost as we are in trying to find help for ourselves.

    I didn't expect understanding from my DP, but she was such a good, loving person, she was helpful when she heard what I needed; however, when she got sick, I was the caregiver until she was able to cope and not grieve for her old self as was a terrible time.

    Thank your loved one(s) profusely for any support they give; it will reinforce that you need it, and more could be forthcoming from that caring that is shared.

    Bless you all,

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