Page 1 of 3 123 LastLast
Results 1 to 10 of 29

Thread: How much of my chronic pain can my spouse handle - compassion fatigue

  1. #1

    How much of my chronic pain can my spouse handle - compassion fatigue

    , Night after night, year after year - the same groans and complaints of burning pain, the same battle. As fatiguing as this is for me , one's spouse's compassion is finite and can only last for a limited time. Maybe 3 -5 years. I hear a clinical response like, " is there anything I can get you?" but the answer is really no except to take my hand, hold me, and tell me you care and am sorry I am suffering. I can't really put myself in her shoes. I found that it is best to suffer stoically and silently if this is a chronic problem. I try to not bring her down.
    I wondered how others dealt with compassion fatigue of spouses....

  2. #2
    Jon,

    I am very sorry you are encountering this problem. I have the same, of course. I hate to keep quoting Rancho los Amigos, but they warned us it would be like this.

    You are a hundred times more positive than I am, so if you are getting this, what chance do I have?

    You will get no compassion since your pain is not visible, but fortunately your wife seems committed to you. That is more than 85% of those with CP get. She deserves credit for her support, sparse though it may appear. By comparison to those who left their CP husbands in the dust, she is a trooper and she would like you to so regard her.

    As for your pain, you must suffer that silently and alone. This goes not only for your wife, but your children and anyone who does you the courtesy of associating with you. Accepting this up front relieves you of the disapointment when your expectations they might understand are not met. CP is NOT politically, socially, financially or romantically correct to have. When those mind/body books by Sarno start appearing at your door, just say "Thank you" to the stupidos who think they are helping.

    You are LUCKY though because it COULD be worse. I know you agree. If not, I have a number of friends and relatives I can send your way to remind you.

    Formerly affluent wives take it particularly hard, trust me. But you already knew that.

    By the way, have you ever read the book of Job. Just kidding.

    Actually, I do believe God will make it up to us (and our longsuffering spouses, as well). Just try not to kill anybody, especially yourself. A friend said "God has big shoulders. He can put with someone who is always moaning and complaining and dejected" Actually, he said this in a way that possibly meant, "Puhleeze don't say anything to ME about your pain".

    And although you are exhausted from the pain, and mourn your former profession, and are utterly depleted, what you do for compassion fatigue in your spouse is to pretend that you are doing okay and try to find something she wants, and pretend SHE is the sufferer. Since what she really wants is a healthy you, you will not find the mysterious thing, but if you appear to be trying and never say a discouraging word, you will make it.

    I keep saying "One day I will feel the delicious wind on my skin, and wear clothing with delight, after I die" There is this passage in the NT where Paul says, "If we have no hope of the resurrection, we are of all men most miserable" This has become one of my favorite passages. I dont' want to be a spirit floating around in the hereafter. I want my body back. I want to feel, run, and have fun again physically. I want to be myself. I don't just want to be out of pain. I want pleasure. In the summers we have such a nice warm canyon breeze here. I want to feel that again.
    Last edited by dejerine; 05-13-2009 at 01:55 AM.

  3. #3
    i most passionately disagree, dej, with suffering silently.

    imo, this is the worst thing we, in pain, can do. i can't believe i just read that.

    furthermore...the "courtesy" of associating with us? i am speechless. for quoting the bible and all, maybe you ought to go back and see what it and jesus say about those suffering.

  4. #4
    Senior Member skippy13's Avatar
    Join Date
    Mar 2008
    Location
    in a handbasket
    Posts
    2,536
    I dont knowabout the rest of you but my family abandoned me a long time ago. They just didnt get it. No one gets it except us.
    Anything worth doing, is worth doing to excess

  5. #5
    skippy, there are ppl and doctors trying to help. years ago it was all in "our heads." keeping quiet is akin to shutting up about SCI imo. but yes, there needs to be a lot of understanding from family, friends, work, etc. i have no family left (they're dead) but i know one thing: i will listen to someone in pain a lot better than i used to and, more important, i will speak up about mine. it did me more harm to suffer silently at work for the last 12 yrs than it would have done to just discuss it. the previous 11 yrs of my injury, i didn't have to because they saw me before and after.

    btw, i have some feedback from a dis listserv re your post on assisted living vs. living at home. should i e you? or pm? thx.

    cass

  6. #6
    Quote Originally Posted by arndog View Post
    , Night after night, year after year - the same groans and complaints of burning pain, the same battle. As fatiguing as this is for me , one's spouse's compassion is finite and can only last for a limited time. Maybe 3 -5 years. I hear a clinical response like, " is there anything I can get you?" but the answer is really no except to take my hand, hold me, and tell me you care and am sorry I am suffering. I can't really put myself in her shoes. I found that it is best to suffer stoically and silently if this is a chronic problem. I try to not bring her down.
    I wondered how others dealt with compassion fatigue of spouses....
    I think I just keep quiet most of the time...except when it gets so bad that the tears start pouring down my cheeks and I can't hide it anymore. Other times, I come here and post about it, knowing that understanding people will be able to relate to me without freaking out.
    "The truth will set you free. But first, it will piss you off." -Gloria Steinem

  7. #7
    Dear Cass,


    My post was all about how EXPECTATIONS are often behind our disappointments and discouragements. I do believe that our expectations must be in line with human nature. Not OUR nature, but the nature of mankind generally, who do NOT have CP , and could not understand it on any terms short of acquriing it. How else do we account for what Skippy13 said. Is Skippy surrounded by monsters? No, Skippy is surrounded by the same kind of people who are around all of us.

    I have read with compassion your posts of what you are going through. I certainly do not desire nor advise you to hold back, here, in the context of those who can relate. I love to read the posts of those who have enjoyed support by family. There are people here posting in behalf of their loved ones. I so admire them.
    Last edited by dejerine; 05-18-2009 at 12:58 AM.

  8. #8
    Dejerine -
    I can only speak for myself. I wasn't offended by your post in the slightest and I agree with many of your conclusions, namely , that there is a sense of relief once your expectations of being understood become aligned with the reality that no one, not even one's loving spouse , can fully understand chronic neuropathic pain. It took me many years to reach that conclusion and I am okay with it. Why? Because that is the way it is. I can live with that.
    I also agree with your thought of changing the focus of attention from me, the pain sufferer, to her, the spouse as the way to deal with this situation. You had mentioned this to someone else in a different thread and I really appreciated it and agree. Many of her dreams and goals got shattered along with the shattering of my spine. I think I wrote you a PM with my compliment. In fact, a good way to deal with personal suffering is to help some one else. Somehow that helps. Maybe that is partially why I like Care Cure Forum. I also volunteer (with my wife) at the Crisis Call Center (Suicide Hotline) for this area answering the phones - one 4 hour shift per week.
    Book of Job? Could you give me a description? A Job Description (bad attempt at a pun). I remember suggesting you read Buddhist philosophy which has helped me. Now we are even !
    I really am interested in what other people have experienced on this point of compassion fatigue - now that I understand it and my expectations have changed, I can find the strength in myself to deal with the reality of this. I am okay ! I do have a few weak moments - usually at the end of the day and that is when I started this thread.
    So, I liked both your posts and agree with many of your assessments.

  9. #9
    Senior Member
    Join Date
    Jun 2005
    Location
    Norway
    Posts
    17,427
    Arn’ Maybe exercise less and buy a drink for you’re wife . If not, no biggie with a divorce just split up evenly and be good friends, life is to short for still stand situations over time.

  10. #10
    No one will stick around with someone who can only talk about themselves, chronic pain or no chronic pain. IMO, suffering in silence and making your wife the sole focus of the relationship will be just as harmful as if you talked about nothing but your pain. (And based on what little I know of you, I don't think it's in your nature to be a guy who only talks about your own troubles.)

    I work to make sure my AB husband (who is also my FT care giver) doesn't burn out by making sure he knows I care about his health and well being as much as he does about mine. I go out of my way to ask every day about how he is doing and feeling -- everything from 'did he get any rest last night' to 'how is that scratch he got from the cat healing up' to 'how is his back pain (a direct result of helping me transfer) doing.' To the extent I am able, I take care of him when he is hurting by offering to get him some Motrin, suggesting that he take a hot shower to relax his back, etc. All little things, but it reminds him that I know I'm not the only one who hurts.

    I never hesitate to tell him when I am doing bad, and at times it does become all about me. But I make also make sure that I inquire about him/express that I care for his well being every day, even when I am at rock bottom.

    I am also very upfront about what he can do to help me. Like your wife, he used to ask if there was anything he could get me when the pain became unbearable. Even though he knew the answer was no, it was the only thing he could think of to do. Once I told him (during one of those time when we were both doing pretty good) that bugged the shit out of me and that the best way he could help was to take my hand (after asking if I could tolerate being touched) and say, "I'm so sorry you have to hurt so bad all the time", that's what he does.

    Talk to your wife about what you need to help you, and ask her what you can do to help her. It's all about communication with each other. If either one of you stops communicating about your real feelings and needs to suffer in silence for fear of burning the other out, you're both going to end up isolated, miserable, and resentful of each other. It the same thing that would happen at the other extreme (both of you only talking about your own feelings and needs).

    ...surely most of us feel that we could use a little more awareness on the part of our spouses that we cannot be brave all the time. That we will become weak and afraid, and if they could just be a little more reassuring, it would really help.
    Dejerine, I am at a loss to understand how you can wish for those around us to gain that understanding and offer compassion and reassurance while at the same time, in your earlier post in this thread, espousing that we must "suffer [our pain] silently and alone. This goes not only for your wife, but your children and anyone who does you the courtesy of associating with you." Keeping how we really feel to ourselves and pretending our pain doesn't exist is precisely what feeds the false expectations of others that we *can* hold it together all of the time.

    The only way to get others to understand is to talk about what is going on, remind them that we are human and will therefore have moments of weakness and hopelessness, and educate them that the best way they can help is to do hold our hand/tell us they're sorry we hurt/give us a hug/educate others/etc. Some will get it right away, others won't ever understand, and some will come to understanding over time as personal experiences grow. To suggest that we simply shut up and take it so as to not offend or upet those around us does us, and them, a great disservice. It makes us complicit in our own isolation. And it sends the message that that the feelingsand rights/responsibilities to be heard and understood of people with chronic pain are less important than those around them. That's wrong on so many levels.

    I can't even begin to address the concept that people are 'doing me a courtesy by associating with me.'


    If you look at Kevorkian's records, it shows a chilling picture of how alone those with Central Pain felt, even to desiring death.
    While you are correct in your conclusions about the social isolation among those with chronic pain who sought out Kevorkian playing a role in their decisions to act, to portray it as if it were the sole factor in their decision to die is misleading and inaccurate. There were many more factors behind their actions than that, including a sense of having no control over their suffering and the severe undertreatment of pain that remains prevalent today. I have spent a great deal of time studying those issues, including time spent as a member of the Michigan Commission for Death and Dying, which was appointed by the Governor of MI in response to the Kevorkian deaths to recommend public policy around the issue of assisted suicide. (I co-authored a committee report on procedural safeguards to protect against social isolation, depression, lack of services and supports, etc. from driving the decision to engage in assisted suicide.) Isolation did play a role for some who died and must be addressed, but in no case was it the primary reason people sought out Kevorkian.

    --THC
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


Similar Threads

  1. Replies: 0
    Last Post: 06-20-2008, 03:36 PM
  2. Replies: 0
    Last Post: 10-01-2003, 03:35 PM
  3. Replies: 3
    Last Post: 01-05-2003, 11:57 AM
  4. You have chronic pain: Now what?
    By antiquity in forum Pain
    Replies: 2
    Last Post: 03-20-2002, 01:24 PM
  5. Pain centers and clinics
    By antiquity in forum Pain
    Replies: 0
    Last Post: 03-19-2002, 09:44 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •