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    how many try to hide pain?

    ok, am 24 yrs post, bad neuropathic pain 24/7 for all these yrs, returned to work 13 months post and basically, after 2 yrs post, quit crying all the time, quit saying anything to anybody and just hid or stayed in bed or took valium to get thru it.

    yes, tried all the usual drugs.

    my ? is this: how many feel, like i do, that i have to hide it? i don't mean i want to talk bout it or anything all the time cause i sure don't. but i'm tired of acting fine and hiding when it's so bad i can't move.

    ppl's eyes glaze if it's even mentioned. i had to take dis ret from work. and i still get the "can't be that bad" feeling from ppl. GEESH. so, have been mentioning it more and more last 5 yrs as it gets worse.

    i'm tired of hiding.

    #2
    Cass,

    I have read many of your posts over the years, and always the deep suffering has come out quite clearly. Until medicine sorts us out and hands us the words to communicate, there is simply no way to talk. Even if we did, we are so far away from others, our bodies having turned against us, that it is very unlikely our family, let alone the general public can relate.

    You do a beautful job talking to me. i think I get it. Although no person can ever really get another's suffering. I think you are incredibly brave, determined to get through this, and you are no slacker, as having to stop work is a very big blow to you.

    It does not matter whether you try to hide the central pain or not. No one is going to see it, except those who already have it clearly in view.

    You have to let it go Cass. Whatever you wanted to prove to others, and in particular the courageous way in which you hope others will perceive your handling of central pain, you have to let it go. In this particular world, there is no feedback beyond doubt, puzzlement, confusion, and some measure of rejection.

    No one knows your history, and no one ever will. Even if Dr. Hargreaves successfully develops his antibody to 9 HODE, and your pain is cured, your story will fade away and be forgotten.
    __________________________________________________ _____________

    "Every conversation is false, and we are exophytic to the human experience. We are all like shades, able to observe, but never observed as we are. We exist in a trackless desert of physical suffering, and we shall not be heard of again. Our existence will only be detectable in the holes our condition has left in the lives and experiences we should have shared with others, and in their personalities. They will sense that something is missing, but they will not know what it is, because they will not know who or what we were.

    Being misunderstood is our gift to our loved ones, who should not be subjected to matters of such ugliness. Were our spectre to suddenly appear with wretched clarity in its grimness, it would only paint a picture of horror for them. They would remember us like a trip to a leper colony. That knowledge would answer no philosophical question, but forever interrupt the song of nature itself with discordant tones, and add decay to its beauty.

    We are beautiful to God alone, who is endeared to His children who suffer."

    --Kevin McHenry at painonline. from "Thinking Without Words".
    Last edited by dejerine; 30 Jul 2010, 5:16 AM.

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      #3
      hey dej, figured you'd get it as we have been in touch for yrs. but, the thing is, i don't want to be seen as courageous or any of that. which is why i hid (except here). and, it has always been obvious to me there was only one person i really needed to prove anything to. me. i wanted to be treated like everybody else at work. well...was it worth it? no. no, it wasn't. i suffered at the time, and it cut my worklife (more to the point: my lifespan, most likely) short. it took too much from me and my son.

      would i do it again knowing what i do now? therein, the paradox. i would. not for praise or any of that. for me. BUT. i would definitely handle it differently w/management and HR at work. i would not hide it. i would draw a line. no 70 hr weeks, for one.

      how do we, in pain, realistically get by w/friends? how do we? they go away if it's brought up much. a lot like grief, only the latter is supposed to subside w/time (in my experience, this is another denial).

      reread your post about 5 times. you are clearly correct, i just don't know where to go from here. i want to talk about it. i feel like a monk who has been sequestered for yrs in silence. i need to talk about it.
      Last edited by cass; 30 Jul 2010, 5:30 AM.

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        #4
        I have only had CP for 3 1/2 years so dealing with it for 25 is something difficult to imagine. In my 3 1/2 years, I haven't tried to hide it but don't talk about it much either. People can't understand CP anymore than they can understand how bad the flu can make you feel if they've never had the flu....and yes you will run off your social contacts if all you do is whine constantly.

        The only helpful thing (as far as having an outlet and besides CC) I have found is a very good psychologist with rehab hospital experience. Every once in a while I go whine to him for 50 minutes, pay my $150, and walk out feeling that I was at least able to talk about it.

        Good luck in finding your way. I have just completed my first year of SCI forced retirement and it has been hard. But things are improving and we will both get through it eventually.

        And maybe we will get that antibody cure dej mentioned!
        2012 SCINetUSA Clinical Trial Support Squad Member
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          #5
          I hate CP but like SWH stated if you talk about it to much you will lose friends.

          I used to hide from people or not do activities but then I found out that the pain was controlling and I was regretting not going out and living life. There are times when I feel good and times when I dont. I made a deal with my wife and that if its really bad I will tell her and if I can manage it I will try to move on and keep busy. So far so good but everyday is a work in progress. Hang in there and know your loved

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            #6
            6 years in this month. CP has polluted my life and relationships, family, personal, social. Ultimately no one can cope with it so I shut up. Off all pain meds so it is worse, but since I don't look drugged people assume I'm "healed" or something. HAHAHAHA

            CP is a loose loose situation.

            Dark angels follow me, always, and often their call is so inviting.
            Kindly,

            The Ketamine Kitty

            All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

            Next time I die make sure I'm gone,
            don't leave 'em nothing to work on JT

            And I ain't nothin but a dream JM

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              #7
              Cass,
              My honest answer is that there is not a day that goes by that I do not work to hide my pain levels. Years ago, when I was still working, I remember feeling something literally shred in my shoulder as I was attempting a ramp. Instead of asking for help I pretended I was studying the building, the cloud formation, anything other than admitting I was in agony and pretty scared about what had just happened too. While I do not have to employ such extreme hiding these days thanks to my finally accepting a powerchair and stopping work, I still have some sort of self-censure about talking about pain. The ironic part of that I that I do feel resentful of friends who blather on and on about their supposed pain levels, popping Aleve or some other over the counter med with theatrical flourish that secretly annoys me. I have one friend, in particular, who is always making grunting noises or similar sounds to signify she has an ache. I keep silent, but have often thought to myself that if I was to do something similar it would have to be one long scream resounding across time. A therapist has told me I do too good a job of hiding who I am and what I deal with, and she is probably correct, but my training and my instincts make me feel safer when I am perceived as upbeat, even if that exacts a hell of a cost emotionally at times.

              Comment


                #8
                Originally posted by dejerine View Post
                It does not matter whether you try to hide the central pain or not. No one is going to see it, except those who already have it clearly in view.
                This is a beautiful statement. Absolutely beautiful. I imagine we should be extremely grateful that we don't look as bad as we feel!

                From the beginning, I haven't really hidden it, I just don't talk about it much because it brings it to the forefront and I can't handle it there. I will listen to other's complaints without comment (unless they try the "you're lucky you can't feel" thing on me).

                Sometimes, while listen to others' 'trival' gripes, I must keep reminding myself that 'all pain is relative'. Just because someone hasn't experienced the horror of central pain, doesn't mean they aren't experiencing the worst pain they've ever felt. I can say in all honesty that the pains of childbirth were the worst I've ever experienced, but they are gone the instant your baby is born. This central pain is insidious, vicious & relentless. It is incredibly exhausting. Luckily for me, percoset knocks the edge off it most of the time.

                I wish I had words of wisdom, Cass. Stress sure as hell never helps either. I think you need a tropical vacation with a couple of strong young men to make you comfortable in your lounge chair & bring you drinks.
                ____________________

                "We are the ones we've been waiting for. We are the change that we seek."
                - Barack Obama

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                  #9
                  Yes ... I hide it most of the time. Even w/ family, I don;t want to talk about it all the time.

                  Mine is under control a lot of the time (about half) so that makes it easier. Interestingly, at first I was hiding it from my kids (teenagers at the time) b/c I did n't want to upset them. But my daughters are the ones I can;t hide it from. My youngest can usually tell by the way I am breathing that I am in a lot of pain. Other than them, my mom and my sister, oh and my husband, I don;t think anyone outside of here and my doctors office knows about my pain issues. I am sure ..... paralyzed = no feeling = no pain ...... is he opinion. If it is too bad to hide, I don;t go out.
                  T7-8 since Feb 2005

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                    #10
                    why, exactly, do we hide it? do we hide diseases, like cancer? i mean, i've been on many support pages via hospital sites where friends in cancer post daily updates. that's all ok. friends support, post, etc.

                    but not pain. no. a forbidden subject. where's the pink ribbon and walks for us? even here, we shy away from it.

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                      #11
                      I hide it because whats the point? Telling people you have it doesn't make it go away. If I feel I need to bring it up then I will.

                      Even if you tell someone about it they still don't understand it or know what "pain" your talking about, they simply can compare it to what pain they've been in.
                      Injured:10-16-04
                      C7/C8, T1 incomplete;


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                        #12
                        Originally posted by mr_coffee View Post
                        I hide it because whats the point? Telling people you have it doesn't make it go away. If I feel I need to bring it up then I will.

                        Even if you tell someone about it they still don't understand it or know what "pain" your talking about, they simply can compare it to what pain they've been in.
                        all true. you're young like i was when i returned to work with this pain. take a word of caution: do not hide it from your boss and/or med at work. you will do everyone a disservice, most of all, you. that was my biggest work mistake for 23 yrs.

                        and yeah, what is the point w/friends, co-workers? well, do they tell you they have a headache? or they broke their toe? yes, they do. but we hide our pain. why?? i'm not saying whine. i'm saying why isn't it acceptable to acknowledge, like a headache?

                        silence is the enemy....green day.

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                          #13
                          show your pain and you wear others out, boss/associates tire of it and you. show it at an interview and or mention it and forget the job.

                          It would be nice if we could show it, it would be nice if others could understand,

                          woulda coulda shoulda it sucks but no one can cope

                          I weary of this existence, live my life the best and enjoy what I can and pray to die and be released.
                          Kindly,

                          The Ketamine Kitty

                          All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

                          Next time I die make sure I'm gone,
                          don't leave 'em nothing to work on JT

                          And I ain't nothin but a dream JM

                          Comment


                            #14
                            Originally posted by cass View Post
                            all true. you're young like i was when i returned to work with this pain. take a word of caution: do not hide it from your boss and/or med at work. you will do everyone a disservice, most of all, you. that was my biggest work mistake for 23 yrs.

                            and yeah, what is the point w/friends, co-workers? well, do they tell you they have a headache? or they broke their toe? yes, they do. but we hide our pain. why?? i'm not saying whine. i'm saying why isn't it acceptable to acknowledge, like a headache?

                            silence is the enemy....green day.

                            I used the word "whine" when I shouldn't have. It just never goes away so eventually it sounds like you are "whining" to even the most understanding friends. I tell my really good friends and close family the details one time and after that it usually only comes up if I am having a bad day. That's usually going to mean I can't participate in life at all that day, so I will tell those close to me so they at least know why.

                            I guess I don't hide it on the really bad days because I can't.
                            2012 SCINetUSA Clinical Trial Support Squad Member
                            Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

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                              #15
                              I never had a problem with bosses or co-workers. I didn't try to hide the pain but I didn't complain all the time either. They could see it and quite frankly they were all great about it i.e., having to go to the doctor, time off, surgery, etc., etc. Some even had the same things going on or knew someone who did. The one thing I will say is that I did tire of hearing myself talk about it even when asked. After awhile you just accept it, at least I did. And honestly I would rather talk about something else. Or, in other words...talk about things that interest everyone not just myself say, if in a group. So, nowdays, I just answer them WHEN ASKED and I keep it short. If I can't do something I will speak up. Or, if having a good day, I will tell people I am okay for the day. Family members and friends definitely understand.

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