HOW DO YOU GET FRIENDS/FAMILY TO UNDERSTAND??

Discussion in 'Fibromyalgia Main Forum' started by mrsjethro, Jun 15, 2006.

  1. mrsjethro

    mrsjethro New Member

    This has really been a tough week. I've been down in bed on the heating pad with my back killing me. I've been working trigger points in back and shoulders. Not much sleep at all in 2 weeks, feel flu-ish and a little hoarse, my entire body is aching, and I have no energy at all.

    My diagnosis was only 3 months ago. My hubby and closest friends are actually acting like they are angry with me because I am sick. I have information that I have offered to loan them to read, but they don't seem to want to know anything about this. They just want me to get up and live a normal life. I would love nothing more than to do that and make them all happy!!

    I just don't get it. Why is it that the people that I am closest to and the very ones that I have made myself available to in the past, and have been supportive of, no matter what the situation, are now all suddenly mad at me and offering no support when I need them the most? They act almost as if they think that I chose to be sick.

    I've been hurt, I've gone through being angry and now I think I am just confused. Can any of you shed any light on this for me? I feel almost like I'm being abandoned by everyone just when I need them the most.

    I suppose that I should mention that one of them is my husband, and another my best friend.
    [This Message was Edited on 06/15/2006]
  2. ldbgcoleman

    ldbgcoleman New Member

    This may not be what you want to hear but they will never understand. I have a friend that lost her husband to ALS and she has 4 young daughters. I can sympathize with her and be loving and compasionate but there is no way I can ever understand. I have not walked in her shoes.

    I think the goal will be to ask your friends for love and compassion. Try to educate them. I think it is common for friends and family to be frustrated and even angry at you for not being you. (sometimes this happens when a person loses weight and changes, or when a person dies na dyou are angry at them for leaving you) They may need an adjustment period. You may find out who your real friends are and who you can count on and I promise you will make new friends along the way.

    The most important thing to remember is stress makes this all worse. Try not to feel guilty and learn to ask for what you need don't make them guess. If you are stressed out you will feel worse and it really adds to the depression of this whole thing. It is really hard but try not to let others get you down. I lost a very close friend over my illness. It was so hard but you know what I have also gained friends and I know who my real friends are. I think some of your friends will come around when they get used to the fact that you are ill.

    Good Luck and remember you have friends here on this board 24/7! lynn
  3. dleaning

    dleaning New Member

    to get friends and family to understand what we go thru everyday, and being that Fibro is pretty much new to the public, and they don't know a whole lot about this damn disease. I hear the same thing, just get up early, exercise, go to bed early and everything will be better!!!

    Yeah right!!! Easier said than done! I tried exercising and found that it set me back further. As far as getting up early, well, I could, but I usually go back to bed for a few hours because I just don't feel rested. Going to bed early, isn't easy either. The night time is the best for me and I try to do things then that I couldn't do during the day.

    It took my husband years to come to terms that there was something wrong. I was dx a few months ago. He never thought there was anything wrong, I was just looking for attention. He came with me to the dr visit and he was even impressed that they "hit the nail on the head" with the dx. NOW, he believes me!!! Still isn't easy!!

    Hang in there kiddo!!! We are here for you!!

    Dawn
  4. cathugs

    cathugs New Member

    Some times I think my family gets more dense
    instead of more understanding.

    I have had FMS for years along with Osteoarthritis,
    Degenerative Disk Disease, Acid Reflux, RLS,IBS,
    Migraines,Neuropathy in feet and legs.Bipolor etc.

    You'd think after so many years of watching me
    practially crawl up my steps etc. some one would
    have a light bulb flicker in their head.

    My husband and I went out to eat tonight and I get
    very stiff when I sit awhile. I have a hard time getting
    up and then my legs don't want to move.

    I have to take a step or two to see if I can walk.
    It is really embarrassing and also very painful.
    My husband just goes on ahead and doesn't wait to see
    if I'm going to make it.

    I think he is embarrassed also.
    I told him tonight that I got so mad sometimes at my body
    that I felt like blowing my brains out.

    Instead of being concerned he just let out a few curse
    words.

    So, I know how you feel when they think we do this
    on purpose.

    I don't know what would make them understand. I am sorry that you have to endure this also.

    (((gentle thoughts))) Ruth. (cathugs)
  5. painandagony

    painandagony New Member

    i think sometimes loved ones do need to go thru their own anger/grief period of not having you in their life like you used to be. They should come around. Your husband should definitely come around, as he sees you everyday struggling. He saw you before you got sick, he should understand you would do more now if you could. I don't know what I would do if my husband or boyfriend didn't get it. My opinion is, don't let him get away too long without getting it, that is not acceptable.

    As for friends, they will come around. If they don't, they don't deserve you as a friend. Educate them; if you feel up to it, talk to them about it. Giving them material to read may be too much. I have had success in my past when at my breaking point i freak out to whoever I'm talking to and then they finally get what I am trying to say. We try to be positive and not be 'debbie downer' everyday, but by doing that we give them false impressions. It's such a fine line, I don't want to complain all the time, but if I only complain once in a while how tired I am they think i'm good on the other days. I'm never good so I just say fine when someone asks. However, I like being around positive people so when they ask me how I am, I respond I'm great!! They still know I'm sick, but having a good emotional day. However, this takes a lot of teaching on my part. Sometimes I can deal with teaching, other days I can't. There are no easy answers to this.....it sucks!!!

    Hugs.
  6. baanders

    baanders New Member

    and even she doesn't believe me when I have said that I hurt. She just says, "I know." She said it's impossible to be in pain and watch a funny movie at the same time. I'm so sorry to tell you this. I believe that you will have at least one physical person to go to who will believe you. We all believe you. I'm so sorry to say, but you may or may not go through a process of grieving. It's like having your friends and family reject you. It's like a death of some sort. But I'm coming out of it with the help of this message board. And I know that God cares.
  7. Empower

    Empower New Member

    I truly don't think they will ever understand.

    Its like if you never suffered a migraine, and someone complained to you that they had a migraine, and you think to yourself, "oh just take an aspirin", never realizing how debilitating a migraine can be.

    I think it is hard too, because we have some decent days mixed in with the awful days. On the decent days, we do things, so they think we are okay.

    I have had FMS for 14 years and CFS for 5 and my husband "kind of gets it", my one sister does get it, my 2nd sister is STARTING to understand, and my third sister and mom, don't have a CLUE!
  8. Marta608

    Marta608 Member

    I love lynn's comparison to her friend who lost her husband to ALS; she can be empathetic but there is no way she can understand.

    When we get sick, especially when there is so little support in the medical community, people around us become anxious. Could this happen to me?? Am I friends/married to/gave birth to someone who's mentally unstable?? What will happen to our friendship/relationship/marriage??? See, unfortunately it's all about them.

    They don't mean any harm, it's just human nature for most.

    My advice is to forgive them and use the energy for healing that you're using up in hurt feelings. They may never understand and that's one of THE most painful parts of this illness. Learn to say "It really hurts my feelings when you say that", then move on. We don't have to take it lying down - so to speak lol - but we have to take it.

    Gentle hugs to you,
    Marta
  9. marilynb

    marilynb New Member

    Well, my husband told me this morning he wants us to go for counseling. I said,"Why?" He said, "For us, for you, for me. She has a biofeed back that is suppose to work for pain & I think she can help us." He has been having trouble with one of his feet.

    I guess maybe we do need counseling to find out how to handle the distance this DD has put between us. I have a sneaky suspicsion (SP) that they are going to GANG UP on me. I will try to keep an open mind about everthing & go along with what is suggested.

    He is also in the medical field so, I'm not sure he really believes this exists. Even though he does try to come up with new things to make me feel better. He believes it is a hormonal imbalance, which I am currently waiting for the results from.

    Anyway, I certainly know what everyone else goes through. I wish I could help, but I don't know what to do either.

    After we have gone for counseling, I will let ya'll know how it came out.

    Marilyn
  10. butterfly83

    butterfly83 New Member

    Yeah i know how that is. Even with the most understanding friends and family, i think it gets frustrating for them the longer our flares go on and don't get better.

    I've had fairly good luck with 'the spoon theory'. If you do a search on the boards you should be able to find it. It's short enough that people can read it easily and i think it does a really good job illustrating what its like to be us.
  11. marilynb

    marilynb New Member

    I read the spoon theory & really liked the story. I printed it out, but never gave it to my hubby to read. I bought him the support book & gave that to him. I delivered it to him at work, so I haven't seen it since. I would bet he probably never even opened it up.

    I will not be giving it to my daughter because she just tells me to exercise, no matter what I say.

    Such is life...
  12. Jordane

    Jordane New Member

    Unless they are here or been here they will not understand!!!

    My husband is just getting a piece of it.He has a loooong
    way to go.

    But as long as we know that it is not in our heads,we do have this DD.We do hurt,we are sick,we are deathly tired.
    And so much more.

    I find it wont make an ounce of how I feel any better just because they believe I am sick.Because....I AM SICK!!!

    Hugzz to you ALL!!!
    Pamper yourselves,you desrve it!!!
    Jordane
  13. NyroFan

    NyroFan New Member

    MrsJethro:

    They get like that. Anger, anger, anger and all the stuff that comes after that.

    The one who love you will stay with you and support you.

    It might be good to bring hubby to doc with you and let the cold hard facts out.

    I have found that friends can be fairweather ones.

    Do not sweat the small stuff. I would look at the bigger picture.

    nyrofan