How many of you haven't a supporting family?

Discussion in 'Fibromyalgia Main Forum' started by jack, Mar 27, 2003.

  1. jack

    jack New Member

    I had fibro for the last 3 years. My family members seem to care less about how I feel or what I have to say. They all try to compete with eachother to see who is the more sick person in the family. They treat me like I am lying about my syptoms and they are not interested on learning or asking about this condition. Does anyone have this problem with their family members ( mom, dad, brothers and sisters, aunts ...)?
  2. bejo

    bejo New Member

    My family knows that I have fibro but they don't bother to ask how I feel and really don't want to hear about it.I'm 60 years old so both parent are dead.One of our daughters actually told me to tell her when I am having a really depressed day.I thought that she meant that she would understand and try to help me.I was sure wrong about that though.We live in the same little town but comunicate through e-mail a lot.I e-mailed her and told her it was a really bad day for me,but instead of trying to help me she avoided even e-mailing me until she heard from me that I was feeling better.So I don't bother to say anything anymore.I get my support right here,and am so very thankful for these folks.You've come to the right place.
  3. painin

    painin New Member

    to hear that you have no support in the family. That's the way it was for me for soooooo long. until I started having symptoms that could be seen by the eye. such as my swelling in my legs & feet, my tremors etc. It is so hard to not have family & friends who cannot support or understand what you are going through. Keep your chin up! And everytime you come across new information on this dreadful infliction, throw copies at them to read and try to educate tham about it. I went so far as to have my Drs. talk to husband to explain to him about what I am going through & that he may have a hard time understanding but that I really needed his support to help me through. Good luck! And you will always find people right here that DO understand and are really great about handing out support!!
  4. evileva

    evileva New Member

    My family is pretty good, except for my husband and that is why we are separated. I think the problem is that we don't look sick so it is hard for them to really guage how we are feeling. I mean if we were paralyzed and in a wheel chair then they would have something visible to see. My family has read some about it but still it doesn't seem like it's quite enough. Hang in there.
  5. judywhit

    judywhit New Member

    this message board has become such an important part of my life. This is a very lonely DD. I imagine any illness is lonely though. I come here several times during the day because I know that my friends here have experienced what I have at one time and help me see through the fog. I try to be helpful to others also. My family is as supportive as they can be. I feel very blessed that my children are grown now and self sufficient. I can not imagine having to care for small children with the energy drain of this illness.
  6. Cactuslil

    Cactuslil New Member

    I have had "something" since I walked out with my son while I was in my mid to early forties. I walked out on cloud nine! I was in a massive denial because, of course, I wanted this last pregnancy and all to be just perfect. I'm still for whatever reason praying for a miracle.

    Anyway after the fireworks have died down, after the "family" knows your not after chattle or $; they chill.
    That does not mean they will sweep and mop your floor on a bad day; iron your child's clothing for church.

    I have arthritis driving me crazy right now. Couldn't a family member volunteer to drive my handicapped van ? I bet if I said beach or Mexico I would have to be tied on the top!

    Live is short so the Lord says. Pray to forgive them for the hurt caused you and try to be an example of our savior's
    advice. Love, CactusLil'
  7. JLH

    JLH New Member

    Are you sure that you're not talking about MY family?!!!?

    I think they could really care less about how I feel. I have so many other problems in addition to the fibro, that I never have a minute where I feel good. I go to many doctors, and nobody even asks me what the doctor said when I get home, etc.

    My husband tells me all of the time that he's "not allowed" to get sick, because I am sick every day. He will talk about how he's starting to get arthritis and how his physical labor on our farm is starting to make him hurt, and if I say something like "now you see how I feel all of the time", he starts his lectures on "you see, I can't even be sick one day by myself!"

    When other family members are here, they all try to see who feels worse. Sometimes, when there is a lot of people here, I try to get them to help me. This is when it starts--everyone has this ache and pain and can't do anything for me right now. Everyone tells me to "not worry about it." So, OK, I don't do it today and don't worry about it, but who is going to do it and when -- it's always back to me.

    My #2 daughter (a doctor and single) came to visit me last Saturday, her purpose was to clean house for me since I had been telling her how badly I have been feeling (she is the ONLY one who cares how I feel, etc.) and my older daughter was here (who is 30 and has a 5 & 7 yr. old. When daughter #2 asked daughter #1 to help her clean, she came back with the smart aleck answer of "why, nobody ever helps me!" Of course, this hurt my feeling and I started to cry and told her that nobody ever helped me either when I was 30 and had 3 kids to raise with a full time job (she is an RN but not working since the birth of her boys and is a stay-at-home mom now). She reluctantly agreed to help, but had a real attitude the rest of the day. She used to help me all of the time, but just quit for some reason.

    I had a pacemaker put in last July and wasn't supposed to do anything for a couple of weeks. Do you think anyone would help me. NO!!! My husband went to town each evening and got us something to eat so he would not have to cook or do dishes. Daughter #1 would not help me at all. So, when daughter #1 had surgery in January of this year, I was very polite, but let her know that her husband was taking vacation to help her, so I would not be over to help, but just to visit. Of course, this made her mad, because he was taking vacation, but wanted to fix things around the house, work on cars, etc. while he was off (instead of taking care of her) so she wanted me to be there everyday.

    I guess I should quit rambling on and on. To make the long story short, nobody cares if I am sick or dying. This makes me more depressed and irritates me about them. Not good for family relationships!!

  8. Hippo

    Hippo New Member

    My own family are fine, but my in-laws are not. My husband is divorcing me, and he and his mother, father and sister are all cut from the same cloth. My therapist thinks they are all narcissists, which would explain some of their hurtful behavior. Not only has my SIL "never heard of" CFS/FM, she can't remember the name of it. Also interesting that none of them has ever bothered to research this condition. My FIL and MIL act like there is nothing wrong with me. When I try to talk about it, they just give me a blank stare. My husband, worst of all, knows how sick I am, but is sending me to a rheumatologist on April 8 as part of the divorce. He wants the rheumatologist to declare me "employable" so he can cut off support money. I haven't been able to work in almost 20 years; hoping the doctor will be honest.

  9. teawah

    teawah New Member

    is all messed up. As we all live in OUR OWN reality, it is not a surprise that our families are not as supportive as we would like. Our husbands and wives should be supportive towards us as we live with them and our worlds are shared. Our mothers, fathers and siblings all have their own lives to deal with and their own problems. So it makes sense that we don't get the support that we think we need or deserve.

    I only say this to get to the point that maybe we shouldn't be so very hurt by what our families do or do not do for us. I am sure that their intentions are good but how can they make OUR illness a main concern in THEIR lives?

    As we often say, no one can feel what we feel but us. As fellow sufferers of this dd, we understand each other and can therefore offer alot of empathy and support of a kind that we can understand and appreciate. The others do the best with what they have.

    I hope that my family never makes ME their main concern. I don't think I could take all the attention that my DISFUNCTIONAL family would give me. I would end up running away.

    My hubby doesn't get it and tells me that I should just be tougher and that after a while the body can't take anymore pain and that it will just kick out those endorphins and low and behold, the pain will disappear!!! I wish he could feel this for a couple of days so he could show me how to be tough like him. Yeah sure.

    Well, said enough.
    Love teawah
  10. mapessd

    mapessd New Member

    just don't get it , do they ? I like evileva have left my husband .. to get away from the stupid remarks and the plain old NOT CARING !! My life for me and my two youngest kids are so much better off .. I now that i'm out on my own my mom has kind of come around to acknolage my illness
    I had a really good Fibro Friend who told me that you know how don't believe you are sick and so when they ask how you are just say ok and walk away and don't even try to explain this DD to them because they don't really want to know
    Hugs to you all
  11. fibolady

    fibolady New Member

    my husband (ex) wants a divorce after 23 years of marriage. my fibo was really bad for about 3 years and he wouldn't do anything to support me (except leave everyweekend to farm) and then turned around and said he did everything for me. i can count on one hand the number of times he went to the grocery store. it's a heartbreak that your vows, in sickness and health, mean squat when it comes to fibo. you don't look sick, if only you would do more, if only you would stop taking so many drugs. sometimes i am glad he is gone, but it is still painful.

    my inlaws were no support either, really no one was. it really is an isolating disability that we have to deal with on an hour to hour basis.

    i tried to educate him, but he was too busy with his life and now wants a younger, healthier wife to do all the things i used to do with him. hope he breaks his neck, yaks that was mean. i am in an angry stage!

  12. kar1953

    kar1953 New Member

    Hi Jack. I'm sorry about your unsupporting family. Support is one of the most important things we need. I am so very lucky that my husband is sooooo supportive. There have been times when I hurt so bad I just laid & cried - & he cried with me. In my mind he could not have told me in a better or more feeling way how much he loves me. The rest of my family is a different story except my parents. The ask when they see me but are up in years & can't really help out. I have a brother who called me the night I went to the ER & asked how I was doing. Haven't heard from him since & that was in November! He emails me, but never asks how I'm doing or if I need anything. My sis also has fibro & she does beter about asking how I feel, but she has her own problems with it. I have been off work for over 4 months & 2 people called or emailed to see how I was. And now I know just how important I am there!!

    I've come to the conclusion that we live in such a fast paced world; everyone doing as much as they can in the amount of free time they have; they just don't have time to worry about anyone except themselves, spouse & children.

    You've got to try to keep a positive attitude & laugh about all the "stuff" 'cause if you don't laugh you'll cry & laughter is much better! Good luck........Kathi
  13. NewEnglander

    NewEnglander New Member

    God is my support and now this board is too
  14. afeni

    afeni New Member

    I have a family full of people who love me. I'm married to a man who tells anybody who will listen that he would never leave me, because he loves me and because I've always been so good to him. But he is the same person who asks what I have to be depressed about. He is the same person who can't take listening to me talk about how I am feeling. He turns around and tells me that he doesn't care that he has to work 2 jobs and I don't work at all. He says that he is happy to take care of me. He is the same man who wants to pulverize anyone who says anything to me thats not cool. He is the same person who hates to massage me, and says I'm strong and can take the pain, because I'm used to it. He is the same person that says that when I'm hurting the worst, he can't bare to look at me, because the agony in my face tears him up and brakes his heart. He is the same person who complains about taking me to my oppointments, but won't let me drive highway 95 because the vertebreas in my neck are fused together, and I can't turn my neck like everyone else. He is the same man who gets mad at me if I tell him I can't do something he asks. He is the same person who will get mad at me if he sees me pushing myself. He is the same person who swore he'd never touch me again, when he realised that sex could be painful sometimes.

    Someone please explain to me, is he supportive or selfcentered or skitzo? 'cause honestly--sometimes I get confused.

    The rest of my family try to be supportive, but I can't talk about it with them much. My mom lectures me about taking care of myself (which I really don't know how to do that well). And its almost as if its harder on her than on me sometimes. She lives on the west coast and I'm on the eastcoast. So she can only fuss long distance.

    Sometimes I feel like my family has a much higher view of me than they should. I don't see what they seem to see.

    I think that sometimes people think that if they don't acknowledge something then its not real. I think my husband wallows in denial. My mother-in-law calls him the ostridge. I think when people love you, they can't take knowing how badly you hurt. And sometimes its easier for them to turn around and leave, than it is to stay and watch someone they love suffer. I think my husband battles that everyday. Especially sense my daughter has fm too now.

    Now I know its not the case for everyones family, but maybe some families.

    Ok, anybody who is familiar with my posts knows I tend to write small books, its something I can't help. I try, but fail more than I suceed. But I'm done now. Hope it helps....LOL Afeni
  15. jeniwren

    jeniwren New Member

    What is a supportive family?? Both parents are deceased & I have 5 brothers. I never hear from any of them! Probably wouldn't even notice if I dropped dead today. However I have a wonderful partner who loves me and takes care of me. If I want to go somewhere, he'll take me no problem! I need something and he'll make sure I have it!

    I don't know all the answers as to why so many people are so self-centered. Some are born that way I suppose and then again that's the way of our society these days, with its ME, ME, ME syndrome. Others are just plain lazy.

  16. DavidTeer

    DavidTeer New Member

    I just want to let you know that I am very supportive of my wife Gee. But her daughter lives a minuteand a half from her and has seen her twice since Christmas.and that day they were only here because I cooked for them. They always say that she should get out more and come visit them. It is a hugh chore just to get Gee to the doctor.
    I've tried to explain to them how Gee hurts all the time but they just don't get it.
    Any way,I know it is hardfor a lot of you because it is hard for us. We are very much to ourselves now because the kids don't have time for sick ones. I tell Gee all the time that as long as I am able I will be there for her and that is what matters.
    My little bit of advice to you is that you knowhow you feel and you should not have to worry about anyone else. Sooner or later they will see just how bad this dd realy is . you know you will always have a freind here. Take care all and just believe in yourself. Dave
  17. fairydust39

    fairydust39 New Member

    Hi Jack,
    I agree with Eva, because we don't look sick---they think we're fine!! I have 2 daughters who begged and coaxed me
    to get a computer so we could talk everyday,since we live
    a good many miles apart---now they NEVER e-mail me since I got a computer. They said they don't have time---5 minutes
    a week???? I see them 3 times a year
    Thanksgiving,a week before Xmas, and my Birthday!!! I also cook BIG meals on those Holidays or maybe I would not see them then!! Talk about being busy WOW. BUT thank God, I'm blessed with a wonderful husband who loves me and understands my pain. He never complains about all the time I spend laying down, when I'm sick. True he don't do any house work but he does make our living.I work part time 20 hrs. a week. When I have good days I make it up to him. When I had Gallbladder surgery my mother-in-law said to my husband ---let's go somewhere
    he said no, I'm staying with Shirley. She said she's a big girl let's go. He said when I was in the hospital she was here before work,at lunch time, and after work!! So I'll be by her side, when she needs me. So I'm really blessed to have him.I have UC,Fibro,arthritis and a hearing problem.
    Hugs Shirley
  18. 2girls

    2girls New Member

    My brother! Interesting reading this post because I just hung up with him (lives about 600 miles away). I dread picking up the phone when I see his number pop up. The conversation starts off with sarcasm for not calling him first this week. I truly believe he finds humor in this illness. I have explained what we know about FM/CFS at his request, yet he still feels the need to belittle me. I have confronted him in the past, but nothing has changed. I am very curt on the phone and there is always that awkward pause (hello?). He also tells ME I make no effort to visit him and his family, while he has not visited since the birth of his child! But it's my turn - he was down last 5 years ago!! He has NO concept of this DD and is stressing me out. I am at the point where I probably will no longer take his calls.
    Thanks for the opportunity to vent!

  19. prsonlfailur

    prsonlfailur New Member

    my mother and little sister are great - sympathetic, but calm. they always remember to ask how a doctor's appt went. i just got diagnosed yesterday, and it was my mom who kept me trying. she kept telling me that i wasn't crazy, no matter what the doctors said.

    my boyfriend - he doesn't want to change. i am a total neat freak, so i used to do everything. i didn't want him to clean, because i couldn't stand the way he did it. now, i just can't keep up. he doesn't understand that i can't do the things i used to do. he gets angry when i get foggy and forget things. i am making him read about fibromyalgia, and i'm hoping to take him to a support group, so he can see that i'm not the only one like this.
  20. sparrowshell

    sparrowshell New Member

    This is so sad to read everyone's responses .. infact, even depressing. It's sad to see that family - of all people - are always the ones who least understand our sickness. I recently have been diagnosed with CFS, and have been sick for two years. My family (ie. mother & father) "appear" to be quite ignorant, and don't "appear" to really believe me. My Dad thinks if I continue working full-time, I'll just work it out of my system. Too bad if one day I collapse and the ambulance needs to be called! My Mum, seems to think it's all in my head. I explained to her that even if it was "in my head and was a mental illness, mental illnesses still need to be cared for and looked after!" ... So, unfortunately, I also have no support from the ones I love the most. My support comes from dear friends and other family members, who I am so thankful for. But everyone, keep your chin up - at least we have each other, and we can all suffer together :)