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This Is Wonderful For Spouses

Mtndog

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Mtndog Collaborator
Mtndog
Posted

This is a letter about fibromyalgia, but I think it applies to any life long condition. Thought I'd share:

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 Open Original Shared Link

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Viola 1 Rookie
Viola 1
Posted

Wow, thanks for sharing that! It's awesome and too true!

happygirl Collaborator
happygirl
Posted

Thanks for sharing that, Bev.

blueeyedmanda Community Regular
blueeyedmanda
Posted

Thanks for sharing that letter, a coworker has fibromyalgia and I know she has a rough time somedays.

Mtndog Collaborator
Mtndog
Posted
  • Author

I'm glad everyone likes it! I'm going to share it in Coping With too as sometimes I forget that it's not just hard on us, but those around us too. :)

nikki-uk Enthusiast
nikki-uk
Posted

Thanks Bev - that was pretty spot on.

Although hubby doesn't have a dx of fibro (chronic fatigue syndrome would be a better description) and a whole other plethora of ailments.

I totally relate to that letter.

tarnalberry Community Regular
tarnalberry
Posted

Good letter, and I only wish it could also be generalized. I think that it would help if most people realize that this sort of thinking applies to *all* couples - regardless of health state. The assumptions that are the underlayment of our daily activities (and are usually based on how each of us feels, not thinking about the other person's perspective, because we're only in our own head) is what leads to a lot of problems as is.

(That is *not* to discount the cases with chronic pain conditions, which, I think, are a unique case in themselves.)

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angelbender Newbie
angelbender
Posted

Hi! As long as we're on the subject of CFS (Chronic Fatigue Syndrome) and Fibromyalgia and trying to explain our conditions to other people, there's another cool website www.butyoudontlooksick.com where there is something called "The Spoon Theory" that explains to others what it's like to have a chronic painful etc illness. Having been dx with CFS 20 years ago and finally Fibro 7 years ago (officially), when I read that I sat and balled my eyes out.....not typical of me at all. And I sent a few friends a link to the site so that they could read it too. The woman who wrote it has Lupus but personally I feel that it's just as applicable to CFS and Fibro for me. And I know that some Celiacs also suffer symptoms similar to that of CFS and Fibro so who knows whom it might help on this forum. For me the fatigue has been the worst of all and then the pain of the Fibro and then the Celiac was the straw that broke the camel's back, so to speak. Sorry but I don't know how to link that here but if you even just go into Google and put in "Spoon Theory" it's the first thing on the list. And the 2nd. Hope this helps someone out. Oh yeah....I'd print it here but I think it's not allowed since she has it copyrighted.

  • 2 weeks later...
calicokitty6 Newbie
calicokitty6
Posted

Thanks for this letter. My husband has tested negative for celiac. but has symptoms if he eats gluten items. He also has lactose intolerance. I try very hard to make foods he can eat.

I have diabetes and when I was diagnosed 7 years ago, he didn't know how to handle it. He just told me it was my thing and he had no idea what to do for me. Over time, he has learned alot about the disease and understands it better. When he first started having problems, I was right there to learn about celiac and help him any way I could. A side effect of our 2 different problems is that he is more aware of each other's dietary needs now.

This letter could apply to many different diseases including fibro, celiac, diabetes, and several other life altering diseases. Thanks again for sharing. I plan to copy it so my friend with MS can have a copy to show her husband.

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