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How do you handle the guilt?

happyHBmomhhappyHBmom Posts: 2,070
edited 06/11/2012 - 8:39 AM in Chronic Pain

Hi there, I'm new. Anyway, I am settled in for the long haul- after an accident which fractured L2, I did not receive proper follow up and now have a collapsed burst fracture.

I understand that I'm quite lucky because I do not have any paralysis or weakness, just pain and movement problems due to the mechanical issue (also have degenerative disk disease and herniations in L4/L5/S1).

But really I'm only able to do less than half of what I did before. No twisting, bending, lifting. Can't pick up things from the floor or unload the dishwasher, do laundry, or even sit in a chair for very long.

I realize that pain management will only go so far and I'm likely permanently disabled. My family has been wonderful about it, but the guilt is awful- I am supposed to be more useful than this! I am supposed to be able to do things!

Does anyone have any words of wisdom?


  • hi and welcome to the forum! :H we are here to offer you support and answer what questions we can. i am sure if you stick around the forum you will hear lots of good advice and make lots of close friends.. :D guilt seems to go along with chronic pain and is something most all of us deal with.. i say just be patient with yourself. :D accept what you can do as ok and don't beat yourself up over all the other stuff.. all the best to you!! Jenny :)
  • Guilt stinks, there's no easy way around that. I think most of us go through that phase of chronic pain, where we feel guilty. I used to wonder why in the heck my husband stayed with me and put up with the extra burden that was placed on him. He just smiled and said "for better or worse". What I found that worked for me, was to focus all of my emotions (negative and positive) into finding ways to do even the most simplest task. I found I could do dishes by hand, a few at a time if I pulled them towards the front of the sink and just did a little at a time. It was a great victory for me and one victory soon became two and then three and so on. I found I could use a golf club (I didn't have a grabber or anything like it) and I could hook a few pieces of laundry at a time and walk them to the washer. So after a few trips back and forth from the laundry hamper to the washer, I would eventually get a load in and washed. I could get the clothes out of the washer using my BBQ tongs and into the dryer. So when my husband came home from work, I had one load of laundry washed and dried and ready to fold.

    He appreciated the small things, knowing how much effort it took for me to do them. I saw each one as liberating and the accomplishments just kept growing over time. So then the guilt was gone or incredibly diminished and the sense of self worth started coming back.

    I don't know if this helps, but it's what worked for me and still does to this day.

  • i have never had an ounce or second of guilt about my chronic pain. this is one of those things that some deal with while others don't. please explain why you feel guilty. if you can't do some things then so be it. i can't do a lot of things and my family and work seem to be supportive about my limits. if you are limited, then so be it. it is not your fault or others. it just is. if you cant deal with the gulit, then get professional help, thearpy or talk with your pain dr or ortho dr. i guess i am blessed that i never had felt this way. in my opinion, it is just the part of life that is bad and nothiing I can do will change things. please see someone if you have guilt. at least you are trying to do something about it
    good luck
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • dilaurodilauro ConnecticutPosts: 9,875

    For a Spine-Health Site introduction, Click on :

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    Check the various tabs at the top of the Spine-Health page and you will find so much that is offered here.

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    formal medical advise. You should always consult with your doctors.

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    Please feel free to contact me at rdilauro@gmail.com or send me a message

    Once any person crosses the line into becoming a spinal patient, there are so many roads you can take from there.
    I have been a strong believer in that courage, positive attitude and faith can move mountains. Disabled then becomes only a word and not a situation. I have known many people over the years whom I considered disabled only because they allowed their spinal condition to get the best of them, while I have also know others that I never look at being disabled, even though they may always require a cane, a walked, or a wheelchair. What you make of these situations is something that only the individual can determine. Its never easy, but in the long run its worth the effort.
    In terms of guilt, that is pretty normal. I think all of us at one time or another felt guilty because we felt we
    robbed our loved ones, our family of a whole person. That I can tell you is how we look at the situation. Almost any situation I have come across here on Spine-Health, I have seen that the patients family was so supportive and understanding of the medical condition. It was the patient who had the most guilt. And that is pretty normal, its hard to get rid of and just forget about. A strong family that is together figures the ways to deal with all of this.
    You are not alone.. Always remember that on Spine-Health you have so many other members that share a common bond with you and and are willing to help.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • only those to whom a sense of duty is greater toward others than what they feel toward themselves, does this station fit. open up lines of communications with the loved ones in your life to prevent misunderstandings between you and yours.
    please dont feel bad that you feel your letting others down, you are loved and love in return, and with that and other tools such as determination, a certain fearless-ness, and acceptance of where you are...right now, and of how you are may defeat the guilt.
    Believe in yourself, on the inside your still the same wonderful person others look to.
    all the drives, dreams and ideologys are still there, just now, getting to them is like trying to run through the tides, up and down and tossed to and fro, but you find your new balance, and, then is when the magic begins!
    be strong when you can
    lean on us when ya can
    and go forth and conquer!
    William Garza
    Spine-Health Mod

    Welcome to Spine-Health

  • Ranch,

    Said like a true poet! Thanks.

  • :)
    William Garza
    Spine-Health Mod

    Welcome to Spine-Health

  • Sweetie...There is no reason to feel guilty. You had an accident!! You can't do SOME of the things you use to do. But your ramily loves you for who you are...not what you can or can't do.
    You can still be there for them.......that means more to them than anything else.

    Cheers :H
    Patsy W
  • I still go through moments of feeling this way. Let's say my hubbie comes home after a long day of work and I didn't feel up to getting up to fix dinner. What I learn to do is A) Enlist my teens to cook up something easy or B) Order pizza or chinese food.

    In other words, we have to learn to do things differently than how we used to, depending on what it is of course. And we also have to accept our limitations which is very difficult to do. We will have better days and bad pain days. Our families understand this and they know we try to do things when we're able to. Little things mean a lot and they rather see that than you hurt yourself badly because of overdoing something, and then you wind up stuck in bed.

    Be kind to yourself. You didn't ask to have these problems, none of us have but we must keep on living the best way we can. Take care
  • It is true for the most part we have nothing to be guilty for, we live a changed life in which we have limited impact, who would not what to be able to be that person of old.

    We do not look ill, those pangs of guilt are the unrealistic expectation we ourselves design at times and perhaps others make us feel guilty, when they should not. As said, this is all a learning process and it never stops. We must fight that inner voice that tells us the things we should still be able to do, we have our own inner expectation that exceeds our capacity some days and we need to stop prior to doing more that we reasonably should and initiating pain as a consequence, pain in the bank I call that, do it now and pay later. Pain changes us into driven individuals always seeking self improvement and that is a good thing, if we had no guilt that may allow us to mark-time more than we should.

    My wife encourages me when I need it and tells me to rest at times, it is a partnership, together we live this limited existence, sit stand, lay down, me that is. I am not supported to hide behind my pain, I know I am doing the best that I can in my circumstance, every day together we climb that mountain, and in the morning we awake at base camp once more, we help and support each other.

    Despite the continual pain I achieve more, have learned to accept myself and acknowledge the things I can and do every day, they may only be simple achievements that I cherish, they are mine.

    Guilt is in not trying and for the most part historic, living in our now is not easy.

    Take care.


  • I too am a walking non visable disabled person, And I been at it for a very long time.
    When you said that “you were in it for the long haul I was hoping we both interrupted that as you know, and Accept your situation, if not the haul will be really long..

    To me, guilt is part of the bigger pitcher, and perfectly natural, and believe it or not extremely necessary. Think about Isn’t “permanent” chronic pain like a “death”
    It is a death, there is no way to sugar coat it , because of chronic pain your old life can no longer be, as you knew it. You simple can not do it any more. I know it’s easy for some one to tell you to accept your situation and go forward. Not so easy, and there is no way of telling how long it takes. Like, in a death, the four stages must be experienced, in order to move forward.
    1) denial –just give me a pill and let me go on with my life
    2) Anger-what the hell did I do to deserve this?
    3) Guilt –sadness-despair- why Me? I’m a burden to every body, I cant see a future with me in it
    4) Acceptance- I am what I am, I can do what I can do., and I feel proud that I did it.

    Try to smile even it hurts

    JJ from beautiful Montreal
  • disabled american, i could not agree with you more. you hit the nail on the head. you are only disabled if you want to be. i too am permanetly disabled, but i work, teach special ed high school with the worse behaved kids in the universe, travel. go to disneyland, lake tahoe, swim, etc. it is a state of mind. i am in tremendous pain all day every day but i don't let it control my life. yes it is there and there is nothing i can do about it except take my meds and see my doctors on a regular basis. i have nothing to feel guilty about. this pain is not due to a fault of mine or anyone elses'. it just is. make the best of it and be happy you are alive. i have a great family and my son is the joy of my life. i guess i am a glass half filled type of guy. try to look on the positives of life. yes most people do not deal with pain but a lot of people have other problems which i do not have
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • You have all given great advice and I agree with all of you 100%. I'm not sure what else to add.

    I feel most guilty for the added responsibility I have placed on my children for picking up my slack. I feel extremely guilty on the days that we had made plans and I'm not able to follow through. I feel like I let my kids down and sometimes they understand and other times they don't.

    I'm not fortunate enough to have a supportive family and I know there are others on here who don't either. Some of the guilt I feel has been placed on me by others close to me who just don't understand my condition. I do as much as I can when I can and yes, there are days I push myself and regret it for days later. I go in with the attitude that I'm going to hurt whether I sit here on the couch and rest or go sit on the bleachers and watch my children's games.

    Only I know my body and it's limitations so I leave it up to me to decide when and how much I'm going to do from day to day. I do my best to stay positive each day and be thankful for what I am able to do and not focus on what I'm not able to do.

    In my opinion, being a mother and wife in this condition brings about even more guilt as we are expected to be able to do some much more.

    I'm very glad there are others out there that have a wonderful and understanding support system.
  • Well said Jon,
    We all have pain and not letting it control your life is a skill to be learned, it is not easy, the close proximity to special ed give you constant order of the hierarchy of your condition in the wider perspective and that recognition helps you cope, we all need to be positive.

    My own son is disabled and that too gives me some perspective of the role that I have in encouraging him to do his best every day, he is my shining light and it is unusual for our children to be leading the way in how to endure difficult circumstance.

    The more successful here have that half full persona you mention and have developed an aura of acceptability with a small a, and taking responsibility for that element they do have any control from this imposed condition. Like ducks in water we are paddling furiously while sedately moving forward in a calm manner. We still have to acknowledge our limitations and live with what is left, compacting our historic healthy lives into our new restriction.

    We are living our own “wonderful life” existence and learning from each other with support and guidance.

    Take care John
  • Well, to the level that I can continue activities, I certainly do. I still ride the horse that injured me (that was an exercise in fear management!), and am still a full-time mom.

    But I can't bend or twist, so there are many things around the house that I can't do. That's where the guilt comes from- my husband really has to take up a lot of slack. And of course there are those times when I'm just not capable of anything- luckily with PT and PM those times are few and far between.

    I guess some day I'll have to just stop feeling like I am half a mom and half a wife. It's hard, though- I know this isn't what he signed up for when we got married (15 years ago!). I just find myself apologizing a lot!

    I am ramping up on Lyrica and it really seems to be helping, so I have a bit more hope now than I did a couple of weeks ago.
  • You'd think, but I've tried it both ways (riding and not riding) and the riding actually helps. I asked my physical therapist about it, and he said that it probably has to do with keeping the joints mobilized without stressing the muscles. Sometimes things I do while riding aggravate it, and I treat it the same way I do other activities- I just back off of that specific thing.
  • just on here reading had a really bad lower back spasm this morning..I was reading where you wrote about laundry lol I use my cane to get them out of the hamper and push a few at a time to the washer and I ordered one of the sock pullers online really a great big help!I get so depressed sometimes thinking I am only 44 what in the world is going to happen as we get older..My husband bought me a laundry basket that has wheels and a pull handle on it, never thought that those simple task would be taken for granted..
  • Keeping the spine moving isn't a bad thing, is it? Isn't that why they say walking is good for you as well? Riding is actually one of the few activities I can do without pain, because of the way my pelvis is supported in the saddle.

    The poop scooping, on the other hand, I'll agree is counterproductive ;)
  • Great thread...

    I'm relatively new to horseback riding - and it is my final frontier for activity. Where I once golfed, ran or played tennis daily, I am now reduced to extremely limited activity. I started riding a few months ago and there is no way I'm going to give it up. I have to do something active - and I don't think my heart could take it if I had to stop riding. Even just grooming and leading her around cheers me up.

    That said, are you all riding English or Western - and which is better for riders with chronic pain?

    I ride English - mostly in an arena - and sometimes find that posting trot relieves some of the pressure and pain. Obviously, this isn't always the case - every day is different. Long trail rides just hurt - so I have avoided trying to ride Western - though some of those saddles look much more comfortable.

    What works/doesn't work best for my fellow spiney-riders?
  • I think my "get out of jail" fee is starting to wear out as my family did not do the usual traveling this year. It seems I have till Spring Break in March as I can tell they want to go back to CA for some fun. I just hope I am ready and honestly it is bothering me a bit that I do not want to let them down.

    As for horse back riding I have to agree with disabled as it is has to be terrible on your back and hips. I mean just getting up on the horse is no easy task. At this point I will not ride my bike and that was my love as it just moves my hips too much. I can not imagine what horse back riding could do.

    Also the number of people who post here that there injury was due to a horse riding injury makes me want to stay 20 yards away from them at all times. I have read the worst of stories from horse back riding.

  • Yes, horseback riding is a fairly dangerous activity. It's kind of something that you have to REALLY want to do :)

    Kilo, I ride dressage, mostly in the arena. I have experimented quite a bit, and find that just finding a well fitting saddle is so key to comfort. Rising trot is definitely less stressful on the back, and walking is like getting a massage (I also have been hanging out with the therapeutic riding center a bit lately- people who don't believe what horses can do for people should check out the research on TR)! Because the rhythm of the walk mimics the body's internal rhythms, it relaxes muscles that are in involuntary spasm. It is wonderful for kids with Cerebral Palsy!

    I find that the wrong saddle, too much cantering, or too much sitting trot aggravates my back (however, my more severe injury is up at L2, so you might have a different experience). Walking and rising trot are very relaxing and help me develop the muscles in my hips and core.

    My pain management doctor also rides, and he has had the same experience that I have (that riding really helps). On the other hand, his PA had to quit riding due to back issues, so clearly it depends a lot on the individual.

    I will just say that I just spent 30 minutes searching through files for something I need, and it caused a lot more pain than a 1 hour, pretty rigorous riding lesson.
  • We should have no guilt for the things we can no longer do they are transposed into things that we have designed and developed for the restrictive capacity that we do have, responsibility would be in not trying to adapt. Time erodes the capacity that we did have and the very basic tasks come under scrutiny. In reality we are all working harder to do less and that is difficult to accept for anyone. I have days when I cannot stand up or walk as a consequence, on the days I can do more, I pace back into what I can do.

    Acclimatising to the new us, takes time and understanding of ourselves, acknowledgement of the things we do in spite of the constant pain and look towards opportunity rather than historic goals no longer attainable, it is not easy. I have not given in, for the most part I am working harder than in my healthy persona and I need to develop an appreciation of the continuing effort that is required.

  • I really like your last sentence. I never looked at it this way:

    "I have not given in, for the most part I am working harder than in my healthy persona and I need to develop an appreciation of the continuing effort that is required."
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