When the ones you love don't believe

Discussion in 'Fibromyalgia Main Forum' started by Evadyl, Mar 6, 2007.

  1. Evadyl

    Evadyl New Member


    Hi everyone,

    I have been having a hard time of it lately trying to get my palpitations under control. Due to this I have become a lot more limited in what I can do. Before this I had been coping reasonably well with life even though I was still functioning at a pretty dismal level.....it was much better that now though.

    Anyway one of the most hurtful things for me is when people don't seem to believe me when I say how sick I am...which by the way I rarely do...I have to be in dire straits as I don't like to burden others.

    I know my family in part at least don't believe that I am sick. My brother openly told my partner that I EXAGERRATE things. This was so hurtful to me. Then at the weekend my sister asked me to go to a pub with her on Sat nite. I told her that this was out of the question as I would prob pass out. By the way I cannot remember the last time I have been in a pub. I haven't touched a drop of alcohol in almost 10 years. Anyway she kept on at me and then asked me again on Sat morn I said No, I'm just not able. She just snapped at me " your just going to have to start getting up and going places, this is ridiculous the way your carrying on". I said don't you think I would if I could. This is not my choice to be sick, I can't help it. Do you not think that I would love nothing more to be out doing stuff with my kids. This is not my fault.
    She did drop it after this but she never apologised. Why do the people who supposedly love me not believe me????

    I know I am probably partly to blame as for the last number of years I haven't let on to any of my family that anythings up as I didn't want to be a burden. It's only when things get really bad that they know somethings up. I do often think that if my sister could have this illness for just one day then maybe she'd be a bit more compassionate. This is the same girl who used to say to me years ago when I first got sick "Oh there's nothing wrong with you".

    Don't get me wrong in all the other ways she is so lving and soooooo generous and is great with my kids. I love her to pieces. If only she could be a bit more understanding.

    Sorry for this being so longwinded I just had to tell it to somebody.

    Hope everyone is having as good a day as possible today.

    Take care

    Love Evadyl.X

    Hope
  2. benalliesmom

    benalliesmom New Member

    My brother says that I am a hypocondriac (sp?) and that I should just "snap out of it" My dad feels the same way, but doesn't say it. I have one sister that acts like I'm an invalid and one sister that acts concerned! My mom understands very well, she has Lupus, so she knowthe pain.
    It's funny the different reactions we get from the people we love. They don't understand fully what it's like to live with this DD. Don't take everything they say to heart, just keep telling yourself they don't know. If someone doesn't have a chronic condition, they will never understand, so don't worry about them. Here you have a whole lot of people who understand and care for you. We know what it is to live with pain everyday and all the other stuff that comes with it. I just wish someone would invent something like the pregnancy belly that they made for someone to understand how an expectant mom feels. Wouldn't there be a lot more understanding wouldn't there!!LOL

    Peace & Love to you
    Vicki
  3. AvalonMist

    AvalonMist New Member

    Hi Evandyl,

    I sympathize with you. My first marriage ended because my husband didn't believe I was as bad off as I was. He wouldn't even read a pamphlet on CFS and FM or go to the doctor with me. My mother-in-law was upset that I couldn't visit with her in N.J. more often, even though I explained how painful and exhausting it was for me to pack up 4 children, then drive 3 hours in a car, then visit realtives when we got there. (Ironically, she was just diagnosed with FM.)Friends were sceptical when I would have to cancel visits.

    I'm now re-married to a sympathetic man, and it makes all the differnce in the world. Still, though, there are family members and friends who dont't understand my condition, and feel I an using it as an excuse not to do things. I finally decided after nearly 15 years of this, to just not care. I have to take care of myself without worrying what anyone else thinks. Those who don't believe me aren't worthy of being part of my life.

    Liz
    [This Message was Edited on 03/07/2007]
  4. 139864

    139864 New Member

    Hi Evandyl

    This is something that I wrote about after being dx'ed with PBC ,FM and Pulmonary Fibrosis ...And was sick of people telling me ...YOU DON'T LOOK SICK It applies to all chronic illnesses as well as Enviromental /Autoimmune Diseases
    Stay WELL ;)
    Brenda UK


    LIVING WITH PBC

    I wish they could walk in my shoes for a day
    Then they wouldn’t be so quick to say
    “But you don’t look sick .you’re looking okay “
    Then they give me that look as if to say
    “You’re not really ill, it’s all in your head “
    Well I don’t care what they think: I’m going to bed
    Having a chronic disease might make you feel needy
    Having three of them makes you feel downright greedy
    Water infections that make me feel drained
    Have I taken my pills? Can’t recall, fuzzy brained
    My body thinks it’s been hit by a tram
    Am I getting the flu? No; it just feels like I am
    My eyes and my mouth are screaming for fluids
    I’m on more medication than I know what to do with
    To read a good book was a pleasure of mine
    Now the print goes askew by the third or fourth line
    Two inhalers so I am able to breathe
    Two red hands stemming from a liver disease
    The itching starts and I tear at my skin for satisfaction
    The men in white coats will soon have me in traction
    Every muscle and sinew is ever so sore:
    In fact I think I’ll lie down on the floor
    The soles of my feet feel as if they’re on fire
    A bucket of ice is what I desire
    I’ve cleaned half the kitchen: and you know it looks grand
    Now if only someone would give me a hand
    To finish the job because my oomph is all spent
    I don’t know where it’s gone
    It just got up and went
    Don’t give me your pity: that’s the last thing I want
    Understanding and laughter are what I am after
    Because they do me more good than any medicine could
    So the next time someone tells me:” you don’t look sick
    You look rather well”
    I’ll smile very sweetly before I yell
    GO TO ****
    __________________
  5. Shalala

    Shalala New Member

    No one but US understands. That is why we have to support each other in this. Don't apologize for being longwinded. We all need to vent or talk at times. We are here for you.
    ((((((((((((((((( hugs ))))))))))))))))

    ps ... I love the poem that was added.
  6. meditationlotus

    meditationlotus New Member

    a strange blessing to me.

    My family is very dysfuntional and abusive and always used me as a scapegoat. I lost my sense of self.

    When I developed this illness, I had to be real to myself and everyone else. I could no longer be what they wanted. I could only be myself.

    I now take every opportunity to let them know what I am going through, on all levels. (I always use to smile and try to please.) I am saying to them and to myself in essence (I am real, and this illness is real. Love me, support me or move on.) This illness has made me strong. I'm standing up to them and standing up for myself.

    I still get hurt from their lack of understanding, but I also feel that I have been blessed.

    It is as if I have gone through a major transformation, and I can have friends and family that understand, or I can move on, too.

    This may not make sense to some, but this lesson has been a blessing.
  7. survivor13

    survivor13 New Member

    people suck on a daily basis and i find they dont want to know just how bad it can get not besause they dont care but because they cant cope with a loved one going through so much and suffering this way and theres no one thing thay can do to help so they ignore it and it aint happening,a shame but true, i think the lady who wrote the poem above is fab, what a great composition and it explains so mch to 'the normals' i suggest you print it off or copy it and also print off 'letter to normals' from this site which is fab too and have a copy posted to all your friends and relatives of each and see if their attitude alters at all, worth a try and you will have lost nothing but have everything to gain by their education into your dibilitating life and maybe a new bit of understanding which is worth its wieght in gold. good luck with all this and keep your chin up hunni.....xxxxxxxxxxxxxxx
  8. tubbyjrt

    tubbyjrt New Member

    My loved ones have a problem because they just don't understand how I can feel fairly good one day and then can barely drag myself out of bed the next. I am so lucky to have a circle of friends who suffer with the same problems I do. I think I would go nuts if I didn't.

    I just wanted to let you know that a friend of mine gave me a copy of a letter that she found in a book that has helped me so much. I wish I knew what the book was, but the Chapter 15 heading is "Crisis, Conflict, Communication, and Survival Skills". The letter is: Letter to Those Who Do Not Have FMS and/or MPS. I will now include the first two paragraphs. The entire letter is pretty lengthy so if you would like the whole thing you can email me and tell me if you would like the rest.

    In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me before you judge me.

    1. Please understand that being sick doesn't mean I'm not still a human being. I have to spend mnost of my day dealing with lots of pain and considerable exhaustion, and if you visit, I probably won't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school and/or work and my family and friends, and most of the time I'd still like to hear you talk about your concerns, too.

    Now that you have gotten to read a sampling of the letter and you would like to have it in it's entirety you can email me at tubbyjrt@fewpb.net. I will be very happy to send it to you and anyone else out there who might like a copy to adapt to their situation and share it with your misinformed, judgemental and uncompassionate friends and family. I think it will definitely help.

    Keep your chin up...it will get better, I have faith!

    Good Luck & God Bless,

    Tubbyjrt