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 Fibrohugs.com

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 http://www.fibrohugs.com

From my expreience, it is really hard on guys. They are so whimpy when they are sick but they expect women to be so tough...therefore, we enable them by trying to be tough. I had a good friend that used to be really hard on me and I thought they were being uncaring, it turned out that they actually were afraid to show caring because they didn't want me to think they were pittying me. The only advise I can offer is to do your best to get the communication open. I am sure that he is probably pissed off that this demon has taken a big part of you away.

what i do when i cant get through to my hubby, which isn't very often but, i write him a letter and make him read it,

it helps it re-opens the line of communication.

Karen

I have a tendency to send my BF an email if I am frustrated about something because it is easier to put your thoughts in writing and put them all out there. Then you can discuss it.

I had never thought about using it on the "How I am feeling healthwise" side.

As a man with FM I feel I am fortunate in that I tend to receive more support than I think women receive with FM. I don't know why, except something that noelie said about how men tend to want to "Fix" things rather than listen and allow women to be heard.

I use to be like that whenever my Wife was feeling down or was having a crisis. I would always try to fix the problem and all she wanted from me was to just listen to her rant and rave and be there for her.

So after time, I now am broken and am fortunate to have a Wife that does know how to listen and is my personal HERO. My children are my life-source.

Men who have no idea what this is like are probably stumped by the notion that there will never be anything they can do to fix it. I think it takes a certain wisdom and patience to be able to stand back and see it from a woman's point of view and simply be supportive by listening and being there.

If I'm wrong then I apologize, but it's something that I think about and realize why my own doctor is hard pressed to understand my situation and wonder if I went to a doctor who was a woman, would I receive better treatment? I don't know, but I do ponder it.

Can you give a link to both the letter to "normals" and "The Spoons". I tried searching and can't find either one. It just sent me back to this thread. I would love to let my husband, who won't talk about my issues, read a letter directed to him. I want him to know that he is not alone. There are other men out there as well, experiencing whatever anguish he is. I KNOW he is struggling, I can see it in his eyes and on his face and in his voice when I do get him talking about it. But generally,he just changes the subject.

Thanks in advance....A