Tuesday, October 24, 2006

***A letter to "Fibromities"***

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.


hugsdoodlewacky said...


pharmolo said...

In a situation like that the "for better for worse" surfaces, Lisa, but it sends you wondering what the "worse" is in your scenario. You share things that many other couples will never touch upon. Go well

merry1621 said...

I think this is a very brave statement!  It's TRUE, too. But in our marriage, I have been the one with most of the surgeries and problems, and I forget sometimes how hard it is for the other spouse.  About 2 yr. ago Dave had to have stints in his arteries, thank God it wasn't a bypass, It really freaked me out to see him be the "sick" one.  Good entry Lisa, even though we aren't Fibromites.  Merry

queenb8261 said...

Words for anyone with a spouse, loved one, child with a debilitating illness. My family never will understand what I am going throught and I will never know what I am putting them through . When I was diagnosed with Ulcerative Colitis my DR made us all come in for a family conference.  My kids & husband got a full education on what I have  & how it woud effect our lives.  Never before or a since have I had such a caring physician. Hope all is going well for you this evening.
Hugs, Barb  In a message dated 10/24/2006 11:52:22 AM Central Standard Time, cc.kastens@verizon.net writes:

heathermarie3073 said...

Wow, what a touching letter!!  Through your journal I read what you are dealing with, but I never thought of what it must be like for your family, having to see you in pain all the time etc.  I got chills from that!!
xoxo, Heather

queenb8261 said...


dca721 said...

Hi Lisa,
I know it's hard for everyone.  When I was first diagnosed with rheumatoid arthritis I was so sore at night that my husband had to sleep in the other room.  I was just in agony.  Sometimes I would be so pissed that he didn't understand and wish that he could feel it for at least 10 minutes.  It felt like my arms had wires inside that twisted without me twisting.  Just agony...luckily I got on some meds that did help.  After years of it, it has taken it's toll on my feet, they are all deformed...I hope I wasn't offensive when I said at least I could walk.  What I meant when I said that was as bad as they look, I am happy that I am still able to walk.  I do worry about the future though.  Sometimes best to just think one day at a time, for me to keep my sanity.
What you are going thru sounds like pure hell, I read about it in your last entry and didn't know alot about it.  You wonder why these darn things have to happen.  I hope you have more good days then bad...
Have a good night.