trying to understand

Discussion in 'Fibromyalgia Main Forum' started by blueski31717, Aug 17, 2006.

  1. blueski31717

    blueski31717 New Member

    I know alot of times people do not understand our disease. I have come across a letter and it goes along with the letter to normals. Please read it and also understand too some people really do want to understand and maybe we as suffers do not understand what our loved ones go through also.........

    A Letter To "Fibromites"
    Monday, January 26 2004 @ 06:08 PM CST
    Contributed by: suds A lot of times we as family members, friends, and loved ones are supposed to understand, accept and be sympathetic to someone who has an illness.....

    A Letter To "Fibromites"

    I am a spouse of someone with fibro.........
    by the (late) Donna Euteneier from

    A lot of times we as family members, friends, and loved ones are supposed to understand, accept and be sympathetic to someone who has an illness..... and I agree with this statement, but only when we are given information, understanding and support ourselves.

    Fibro does not just affect the person who has it.... fibro affects the whole family..... it steals away all of our lives. I have watched, broken hearted, as Ken has packed away his dreams and hopes for the future.... but along with those dreams and hopes were mine also. Just as you have come to realize that your life has changed forever so must we....... and we have to be allowed to morn that loss also.

    We become angry and depressed just as you do...... we struggle with KNOWING that you are sick, to being angry that you are sick....... not at you but at the illness. Then we become angry at ourselves for feeling selfish and thinking of ourselves.... thinking of the added stress on our lives... the added responsibility.... the added guilt.

    We have gone from a 50% partnership in this marriage, this family, this life, to sometimes feeling like I'm carrying the whole weight of it alone. I have to remember that my spouse is sick..... that the illness has taken that away and sometimes I'm lonely, scared, and extremely sad at the loss of what was....... but I also know in my heart that I love my husband more than life itself and TOGETHER we will find our way.

    You have to talk to us.... you have to let us know how you're feeling, what you're feeling, and how it's affecting your day........ your life. If you don't talk to us we will never understand how you are feeling and we will assume that everything is as it should be.... thus expect from you what we have always expected.

    I need to be able to say it's "okay" when your angry and hurting........ but it has to be "okay" when I am also. We both have to stop and look at what's going on in our lives at the time....... just as you get angry and lash out sometimes...... so do we.

    So will we really ever understand what you're going through? ......No! Will you ever really understand what we are going through? ......No! But if each of us gives each other the time, love, and patience to find our own way in dealing with and accepting what fibro has taken from us, I think our relationships may be a lot better.

    I hope with your challenge that you wanted to hear the truth...... and that is what I offer in this.... how we feel as Spouses.

    Donna Euteneier
    Copyright 2003

  2. blueski31717

    blueski31717 New Member

    Your night sounds great. My daughter is my rock she is 16 and has her own medical problems but always finds time to do for me. I always at least once a week try to do something special for her.