Husband and kids think it's all in my head

Discussion in 'Fibromyalgia Main Forum' started by BklynCindy, Aug 18, 2007.

  1. BklynCindy

    BklynCindy New Member

    Hi All,

    I was just recently told I have fibro....oh happy day. I have been suffering for years with pain, but without knowing what it was. You would think that my husband would look up what it is I have since he lives on the computer, but he tells me he just hasn't gotten around to it....I know that when I'm having a really bad morning and he has to help with getting out 10 year old out to school...I hear him telling both our son and daughter that mom is in one of her moods...nasty buzzard sometimes...I guess I'm just venting since being told that I can expect to have pain for the rest of my life, but I'm really distressed over my husband's and my kids respond to my being ill. Anybody out there with the same situation and how do you deal with it and the stress it causes?

    Be Well
  2. OpheliaP

    OpheliaP New Member

    I'm so sorry for you that you have fibromyalgia. It is so difficult to get anyone to understand how real it is. I'm so fortunate that my husband gets it, but not many others in my life do. My niece the RN actually insists that I "work through it and get over it". So it's not just our families that can be difficult, the medical profession as well is still full of those that don't believe.

    Fortunately, there are more and more that now do.

    My mother, God bless her, told me once that you have to take charge of your own well being, because nobody else ever really knows how you feel. She is in a wonderful marriage, but even so, her husband can't feel her pain. So she calmly sets her boundaries and enforces them. This is what I can do, this is what I can't.

    What makes fibromyalgia confusing for others is that every day is different for us. Some days we can do things, other days we can't. My husband has reminded me time and time again that he can't read my mind, and doesn't know what kind of day I am having unless I tell him. The key for us is communication. If I tell him I'm flaring, he knows not to expect much of me.

    According to him, he is okay with my down time as long as he knows what's going on. It's when I try to keep up and then break down in tears because I can't that he has a problem. Understandable.

    It's been a difficult transition for me, because I have always taken the weight of the world, and the responsibilities of everyone on my shoulders, and somewhere in my head, I still think I can do that, but I can't. The more I accept my "new" self (my new 100% is less than half of my old 100%) and the more openly (and calmly) I communicate with him about it, the easier things go. He loves when I ask him for help, and then praise him for his attentiveness, rather than cry at him about how bad I feel.

    I'm sorry that he is not looking things up on the internet, I know how much that hurts you. Try printing some stuff out and reading small portions to him over dinner. Maybe he is scared.

    Many hugs for you. This disease takes a lot of work to manage your relationships. It adds more stress that you really don't need, but when it comes to your marriage, it's necessary.


  3. bre_ann

    bre_ann New Member

    About the only thing he'll do is if there's an article he runs across, he'll give to me but that doesn't mean HE'S reading it or learning about it. My fibro is manageable and more mild and I've always been so independant so he kind of expects it from me. I don't tell him how I feel usually because I don't think he cares to hear it. We had a few "discussions" on that sort of thing because when he's hurting or sick or whatever, he doesn't hesitate to run to the dr. or let me know about it. He doesn't seem to care near as much when I have something going on with me. It hurts but what do you do?
  4. Ladeedah1116

    Ladeedah1116 New Member

    My family isn't "used to" what I go through because it makes other things (chores and responsibilities) harder on them. A family is a team and when one is not helping out as much as needed to run it smoothly (whether it can be helped or not) makes the others notice it.

    There's nothing you can do to change that much, unfortunately.

    My family members--the ones I live with--understand and accept my limitations. Sometimes very grudingly, but still it cannot be helped sometimes.

    They witness the ridiculous lengths I go to to endure or try to end my pain--the ice packs, the vibrating body mat, the Lidoderm patches, the ACE bandages, the multiple medications I take to get rid of the pain---so they KNOW that this is REAL. No one in their right mind would do what I do to get attention and out of doing what may be thought of as their share of the load around here.

    They also are reminded on my "good days" that I can be a real workaholic at times. Of course I pay for it later, but they have no illusions as to what my work ethic is when I am feeling good and up to any challenge.

    I'm so sorry that you are battling that type of denial from your family. I get it from my sister, brother, and even my mom at times who likes to say that my faith in Jesus isn't strong enough to gain a cure. How do you fight that sort of disbelief when you spend a lot of your day talking to God for a cure? My mother is not here to SEE it, so it is very easy for her to blame all this pain on that simple thought.

    I guess you need to communicate your feelings honestly. Whether they believe you or not is NOT UP TO YOU. If you have voiced your life and daily experience, that should be enough. Ultimately you cannot control what others can accept and what they WILL NOT.

    It's just as simple (and complicated) as that.

    God bless you. Please know you are not alone in this. :)
  5. teller7

    teller7 New Member

    I've had fibro and CFS for 5 years. The first year my hubby felt very sorry for himself. All he kept saying was "I want my life back". It made me so mad. Finally he realized some of what I'm going through because he sees the crashes all the time and I think he's finally come to the conclusion that this is the way it's going to be. I got really depressed the second year of this and I think that was what made him turn around and realize that I want my life back too. This past year he has been very good. He helps me some and that's better than nothing, but he will NOT read any medical stuff about this at all. In February I was in the hospital very weak and I think it scared him. Now he says when I crash that we're a team and we'll get through this. But I don't think that ANYONE who doesn't have this has any idea how bad it really is. It's very sad but true.
  6. natrlvr2

    natrlvr2 New Member

    I have other pain ailments that CAN be diagnosed by tests and he still divorced me.In the beginning he was VERY supportive but as the years went on(before I found the right meds.)he handed me divorce papers and tried taking my son away from me,even though I was the stay at home mom for 4 yrs. prior.I was a GOOD mom.My entire day was spent teaching and making our son happy and smart.
    You can even try to educate them but sometimes it just doesn't sink in for some people.
  7. BklynCindy

    BklynCindy New Member

    Dear Ophelia,

    Thank you so much for your support. I know that this is really my war and I have to pick my battles, but one would hope that their soldiers would not shoot their leader in the back...:) It's early morning right now and it's going to be a beauitiful day. I know that you are right as are the other sweet ladies who wrote back. I guess I'm just trying to come to grips with it myself. I do have a friend that I have known for over 25 years. She is my best bud and she understands. Her sister is a phsyican's assistant and sees fibromyalgia at it's worst and so she understands too. I'm not alone, but when it's your family you just hope for more. I have always been the one to take charge. If it needed to be done in two weeks,I did it yesterday. I can't anymore and that hurts me. The doctor just started me on Lyrica and something else for the pain and to help me sleep at night...I'm also in perimenopause so between my hormones and the fibro, I'm so depressed I can't stand myself. You know, I'm not being entirely truthfuly. Right now, I'm using the computer in my son's room. Can't make it downstairs just yet. But, I have to say, that my son Sam is really a good kid. He will help me out and always asks me if I need somthing or if I am okay. My 17 year old daughter is hopeless, but she has her own life. Pardon me....venting again...look,it was nice of you write back. I guess this is really just my pity party and I will manage to get it together again in whatever form it takes...I'm just going to miss the me that could walk around Mahattan for hours or up and downstairs 20 times a day...

    Be well
  8. DizzyS

    DizzyS New Member

    thinks its all in my head! I get soooo frustrated! Her husband sells health insurance and he told her that at conventions they tell the salesmen that fibro is what they call it when they can't find anything else wrong!!! She has labled me a whiner and hypochondriac. I tried it explain it to her and even gave her a paper explaining it to her but she's convinced it doesn't exist. I give up!
  9. waggoner310

    waggoner310 New Member

    I constantly hear, "You're always sick, is there anything NOT wrong with you?" She just doesnt get it.
  10. yellowstrawberry

    yellowstrawberry New Member

    My husband was really supportive,he always helped when I was sick,picking up the peices.

    You can imagine my shock today when he started with some of the same things I have heard from others.

    I have'nt been this sick for this long(7months)for several years.He was saying,it's the medications,it's your diet,etc..I actually just went on Provigil which helped me to get up and funtion again.

    I don't know,I guess everyone has their own level of tolerance.The thing is,It is yor pain,you feel it.Just because they don't feel it does'nt mean it is any less.This is why I come here.No one wants to hear it.I hope you feel better soon.
  11. harmony21

    harmony21 New Member

    I have kids in their late twenties and both of them have told me its in my head, read no info etc tell me iam lazy

    My husband who i thought was so supportive told me live has cahnged too much since I got Fibro....

    We have had a very tumultous relationship with him going off every so often not being happy with our relationship and wanting more. He has cerbral palsy and needs assistance as well but forgets that, I love him deeply and just keep hanging in there but his words hurt.....

    At least on this board we feel a kinship and understanding so darlin just hang in there like we all are.....

    love and angel hugs
  12. ktpar

    ktpar New Member

    My husband also divorced me after I was ill. He said he couldn't handle me being sick with this disease. He also said that he needed someone who would be able to help him financially. I finally won disability Sep 07. The courts stated that I was too unstable and depressed to take care of my young kids. I was also a stay at home mom. Now I am trying to adjust being a single Mother. Please keep me in your prayers I feel so bad about the way this marriage ended and am in the greiving process. I depend on God for support and too release the stress.
  13. willruthie1965

    willruthie1965 New Member

    Tell them to come talk to me!! I was a non believer then it bit me on the butt!!!!! Hubby was sick 6 years before me.I coudn't believe how horrible this thng was. Ruthie
  14. momof27

    momof27 New Member





    [This Message was Edited on 06/04/2008]
  15. mindyandy420

    mindyandy420 New Member

    I can honestly say that I know what you mean. It really makes me sad when nobody believes you. I can say that I am really sad. Nobody believes me. Not the doctors, not my family, not anybody. I am living in my own little "miserable world". The brain fog is the worst.
  16. frosty77

    frosty77 New Member

    While I think my husband believes this is real, in general, men want to ignore things (like illness) more than women do (hence the reason more women than men seem to 'get' diseases - they go to the doctor more readily).

    I have to beg my husband to rub my arms (then I might get a second or two before he's done). He frequently asks me to do things - like go for a long walk, a long drive, golfing, gardening, help a friend I know he does not get it. And he won't read anything on it.

    But I think it's just a guy thing - he also would not read anything about bipolar which one of his brother's kids has - he loves his nephew dearly, is close to him, would do anything for him, but even though I printed the info, he never read it.
  17. palavee

    palavee New Member

    Hi, I am new here and needing a place of support.

    Cindy, your post is so familiar to me. My husband tolerates my Fibro; he isn't outright antagonistic toward me, but I've heard a few things muttered under his breath.

    It is my parents that I have the least amount of support from. My dad literally does think it is all in my head. My mother doesn't know what to think about it, so she pretends I'm just not sick; she expects me to behave a certain way and not "ruin" the visit. All she has succeeded in doing is driving me away.

    I wish I knew how to effectively deal with the stress and guilt that I feel all the time.
  18. mariellenl

    mariellenl New Member

    My hubby believes I am always in pain and always tired with my Fibro, but because it fluctuates with the weather and my stress levels he feels that the doctors used the term Fibromyalgia to indicate that they didn't know what was wrong with me and couldn't be bothered to find out. My Fibro scares my husband. He is so afraid that the doctor missed something like a heart condition or a rare chemical imbalance that could end up being fatal. When I tell him that I have to take a rest day and just lay around because I hurt so bad and I'm so tired, he always says "why don't you go to the doctor and make him find out what is REALLY wrong ?".
  19. msbsgblue

    msbsgblue Member

    Sit down with him at the computer and ask him to come here with you and read some of the horror stories here. That should wake him up.
  20. gapsych

    gapsych New Member

    Cindy, I can so relate to what you are going through. I was in a very serious relationship and it broke up because of this.

    Something that does concern me is your husband saying that you are in just in one of your moods. That is not being a very good role model.

    I briefly went to a therapist who deals with people with chronic illnesses. She is also a nurse. She really helped me to cope with a lot of things.

    Do you think you hubby would be willing to go to counseling with you? It might help but you want to make sure the counselor is well versed with chronic illnesses.

    Sending good thoughts your way,