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Nobody gets our pain!

LisaRachelLLisaRachel Posts: 286
edited 06/11/2012 - 8:48 AM in Chronic Pain
Hi everyone,

Thank god for SP or I would be so furstrated trying to explain my pain. It's so funny when you tell someone they auto madically say, Yeah, I have that too!! I want to say, really, DID YOU BREAK YOUR FRIGGEN BACK! but, no I sit there and nod my head. I guess my question is why are people so thick? And pain seems like a competation who has the worst pain! Then people get jealous of you for the attention you receive, I just don't get it! It seems people think it's fun to be like me! I cry when I wake up, I crawl to my kitchen to get my meds and I'm alone ! does that seem fun to you guys?? :/ :-/



  • It's not easy...it really isn't. But people do want to 'relate' to each other so often they do try to draw on their own experience to try to sympathize.

    When people ask "how is your back doing?" I hesitate with my response. If I said, better...they will assume 100% better like nothing happened. If I say "eh, ok, I guess", I fear they will think I'm fishing for sympathy.

    It's a double edge sword. It's interesting though because I have found people that genuinely have a 'taste' of the pain. They even say...wow, I feel for you because I am only numb in the foot and it's painful at times.

    I think they just genuinely cannot comprehend the pain.
  • My X was guilty of Munchhausen-by proxy.

    Trust me - no one gets it. I have had people walk up - tell me that they can get by on Advil, and when I tell them what I am on - and how much, they look at me and say - "why aren't you high". My answer - "because this just hits the pain enough - so I can walk. When you have no pain and take the drugs I do - your an addict- NOW PFO -".

    Take care - be good to yourself [swiping a sentiment from someone else today]

  • people without chronic pain , do not get it.

    unfortunate for us

    i think its the "you need to walk a mile in my shoes " thing

    unless someone has experience with it , well they cant truly get it

    i think most on here , can relate to the "How are you". i just say , "the same"

    now re the attention thing, i never get that! :''(
    be nice once in awhile , hey.
    hugs lisa
  • Thought I'd share a post I made a while ago:


    Best wishes to you,

  • Sometimes I feel that way, too. Even though people don't understand and sometimes are unsympathetic, I personally try to remember that everyone has their own problems and even though they may not be as bad as ours (or they may be worse), it's still hard for others too. Did that make sense? People only have their own experiences to judge ours by.

    Centurian, I just want to let you know that I have been told that it's not a good idea to tell people what medications we are taking because: they may judge you, they may have an addiction problem (that you don't know about) and rob you, they may have someone in their family with an addiction problem, etc...and the list goes on. People tend to not be educated on the use of pain medications in chronic pain patients. So even though I want to say "look, I'm on these medications...that's why it's so DIFFICULT for me to work." I don't.
  • MetalneckMetalneck Island of Misfit toysPosts: 1,364
    "still alive despite all odds"

    "still walking talking and breathing"

    or my favorite ... a smile and "thank you for asking and you"?

    Only another Zebra knows what its like to be a zebra ... when surrounded by gazelles.

    Spine-health Moderator
    Welcome to Spine-Health  Please read the linked guidelines!!

  • letter, from unknown auther

    good job there, posting the link

    flower (flower sees another flower on the boards :H wonders what kind of flower she is lol)
  • Lisa,

    ...adding this...
    Your OP asked why people act this way. I think it is because people do have a hard time understanding how you can truly have pain ALL of the time. When someone is rude/insensitive to me, I do my best to let it go because often times when people are insensitive, it's not about you at all, it's because they have problems with themselves.

    I teach children who live in shelters, are abused, are in foster care, don't have enough food to eat, who have parents that are in jail/dead, etc. It helps remind me to be thankful for the things that I do have. There is so much pain in our world and it breaks my heart. Sometimes, by looking at some of my students, you would have no idea what they are going through--but their anger comes out in their words and in their actions. My point again is that so many people have problems and although it doesn't justify treating others badly, it kind of helps me understand why people act the way they do.
  • Every day we meet dozens of people. In our society the standard greeting is "HI How are you?". What we need to remember is that this is a greeting not a true request for information. This is not your mom or sister who really wants to know how you feel today. And I know I find even close family doesn't really want to know about me, they just want an opportunity to tell me what I should do.

    So the response is "Fine thank you, how are you?" or Metal suggests just smile and say "How are you today?".

    I used to have a coworker who would only ask me how I was feeling when she wanted to tell me her problems. I knew if she walked into my office it was to talk about her not me. Once I understood this it was so much easier to have these conversations.
  • To tell the truth I was one of the people that thought they can't hurt all that bad. That was until I hurt my back. what come around goes around.

  • Kris,

    Great point. I've come to notice that people mostly want to talk about themselves. It really is rare to find someone who wants to listen. It's hard to be a good listener, but it's easy to talk!

  • Thanks for the comments..

    Marirpin - I love that post you attached, I think that really sums it up! It's sad but true people only want to talk about themselves, and have a lot of their own problems to deal with. I guess when I'm put in a sisuation where the person just does not get it, I feel hurt! But, I also know that life does not revolve around me too. I know I will get there...
  • I am blessed that I have family and friends, that who may not completely understand (except for my sister, she has MS and knows EXACTLY what neuropathy/radicular pain/musculo-skeletal chronic pain is really like) but they are sympathetic. My best friend (who you could meet, too, if you'd like!!) has had shoulder surgery, and has always gone to a chiro to get back adjustments as long as I've known her. Whenever her back hurts, she always says she knows I understand, but knows that her problems aren't as bad as mine.
    Whenever someone who knows about my pain, asks me how I'm doing, I just say "Not too bad". Because it's true, if it was too bad, I wouldn't be there for them to ask! Unfortunately though, I'm one of those people whose faces give their exact thoughts away, lol, apparently I can't hide when my pain is bad, even though I try. I generally am always smiling and laughing, have always been that way, but I guess I still wear it on my face. At my last job, my boss, who was also a friend of mine, would walk in, take one look at me, and say "you're in worse pain than normal, go home". I wish we all had bosses/friends like that!
    In general, I've found that people are more curious once they find out I've had spine surgery, and then ask if I've experienced what they have with their "minor" temporary injuries. And to the few people I have run across, who just don't get it, who say things like I know exactly how you feel, I have had this "crick" in my neck since I woke up this morning (or something to that effect) I just say, "Yeah, it does hurt, you are so lucky that you don't live with that every day of your life!" and then either ignore them or answer their questions about it. Maybe you could say something like that to those people at your work "Oh, you've broken your back? Me, too!" It usually tends to either wake them up or shut them up. Either way, they stop being annoying!
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • I shouldn't have written that it's rare to find someone who wants to listen. That wasn't a fair statement! There are many helpful, kind people out there, but I think when you meet a person who doubts your pain, it stings. Smiley, I am also blessed with a wonderful support system, and it does help a lot.
  • It does sting, and I think worse, when it comes from somebody who has been lucky enough to have a full recovery. You know the type, "well I got over it, so what's your problem?" Way to kick us when we're down... Just goes to show how different people are, and even though we may all have "back" and "neck" injuries, and may have the same diagnosis, our injuries and pain are personal to each of us, and we all heal (or not) differently. Lisa, I think it was you that said that to me, how our pain is personal!
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • Lisa,

    First off, *HUGZ* to ya. I can hear and feel your frustration through your posts. Sorry.

    I have found and you can see others echo pretty much the same, "everybody" seems to think they understand back pain, or "a bad back", so they either try to side with us about "their" backs, or pooh pooh us as whiners because we still hurt.

    My favorite is: "Oh I hear ya about back pain, my aunt has a bad back." Oh, um, okay! I no longer call it a bad neck/back because Joe blow becomes the expert. I say I have spine issues, and have had surgeries that haven't fixed it. Or due to spine issues, I have permanent nerve damage. It seems to take the urge off of them to say how much *they* understand or know of what we go through.

    I don't mention disks, spurs none of it, just nerve or spine injury/damage. If you mention disks, they have all had the pinched nerve that healed, right? Spurs, gee bunches in my office "had" a spur - it theirs went away?!?! Yeah, okay. What I am getting at is by the time that hernia, tear, spur has gotten to where they want/need to operate, you now have nerve or cord issues. These normals, great if theirs healed, but it still doesn't give them a clue.

    I know it's hard not to let it get to you. I'm like Dave in my replies. Here are mine:

    Still kicking, but not high!
    Same-o-same-o Thanks.
    I'm here, how are you?

    If they can see I am obviously hurting:

    Yeah, here's proof that nerves should be seen and not heard or better yet - felt!
    Life's a bit** and then ya die right?
    Oh yeah, wadda day!

    Or if it is Joe blow (the girl at the check out counter), "Fine thanks, and you?"

    We are here for ya Lisa, and for each other. Cuz in here, "we" are the normals!! *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • My response to "How are you" is often "Hangin' in there!"

    I really can't bring myself to say "fine" when I'm not fine, I'm a month away from major surgery.

    I used to be really annoyed by people who would start talking about their bad backs when they heard about mine. I agree- people simply don't understand how chronic pain and injury differs from intermittent- those years where you feel fine allow you a recovery emotionally and physically that the chronic pain patient never gets.

    And Lisa, I get the same thing- or people start to tell me that they also have vertebrae problems. I politely correct them- "are you sure you don't mean the disks in between? The vertebrae are the bones." Oh, yes of course. They had a herniated disk.

    Or of course there are the people who just don't believe me. I showed you the pictures, what other proof did you want, a note from my doctor? LOL. I wouldn't believe I'm walking around like this either if I hadn't seen the pictures, but sometimes truth is stranger than fiction.
  • happyHBmom said:
    I really can't bring myself to say "fine" when I'm not fine,
    I can't get away with saying "fine" anymore at home. My hubby just looks at me and says "okay, what's really wrong, because when you say "fine" things are just the opposite no matter WHAT we're talking about!!" LOL

    But that's the answer I usually give when talking to people I'm not close with, or when I just don't want to talk about it. It has created confusion though, especially with my mom, she always clings to that hope that things will be truly "fine".
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • I find it very frustrating that people make the assumption that I must be feeling so much better because I am outside for once or that I am at a store buying groceries or something like that. They assume that I am better because I am not layed up in my house like normal. No I am not any better but maybe just having what I call a "Good" day. They are far and few. When I have those days I try and take advantage of them because I am tired of being layed up. But I hate people making it sound like I am all healed up because I am having a slight decrease in pain for an hour or two. They don't see me later when the pain kicks in even worse because I was outside walking or at the store shopping. But for those few minutes I feel kind of normal and that time keeps me going. I wish people would just say hi and good to see you. Treat me normal. We don't need to talk about my back issues. I would like to talk about anything but my back, really I would. I realize people are just trying to care but I have heard it all and I don't want to hear any more. Quit trying to send me to a new Dr, or a new procedure you heard about, or that maybe I should try doing something physically I am unable to. I already am under a physician's care and have tried pretty much everything. I just hurt and apparently I am going to hurt for a long time to come. I accept it, I hope that others will too.
  • a pain specialist .he was not interested .many people aren't its because they can't see our pain .i am sure that if we wore a tee shirt with i am in pain honest! maybe someone would believe us ..just a thought!.mind you as long as its not happening to them ..why should that care
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • Well Lisa this is a wonderful topic!!!

    I made a decision about myself and pain last night....I will be telling everyone, that asks, that I am wonderful!! I decided that this is MY hell to live with.....NOT my friends or my awesome Hubby or my wonderful daughters...just mine!!

    So from now on I am concentrating on being back to my happy happy self and P^&S on the pain!! No matter how bad I hurt!! LOL

    So thank you again Lisa!!
  • that most people, at work for example, when they ask "how are you", they are not really interested in knowing what's really going on, it's just an everyday social question, so I usually just answer "I'm getting there, slowly".

    I did used to say "I'm fine", but like someone else said, this gave the wrong impression and I didn't want to continue giving a false view about how I was feeling at that time.

    I tend to get embarrassed sometimes as well. What I mean is, supposing there's a meeting we have to attend. My work colleagues will rush to sit together and call me to join them, but I'll say I'm fine and make a beeline for the back seat at the end of a row - not because I want to be unsociable, but because if I need to stand up to relieve back/leg pain, then I can do this without disturbing anyone sitting in front of me or blocking their view.
    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
  • I'm so glad to read all your views and how you each manage to deal with it on a day to day basis. I guess the frustrating this is that WE are in pain and yes no body can see we can just feel it. I remember once my sister was buging me about not being postitve and to just snap my fingers and POOF I'm happy! I pinched her arm really hard and I said just think thats what my back feels like 24hrs a day! What her answer was... take more meds! and if we are taking more meds then we should be fine.. LOL..

    I'm so happy that most of you have support it is really important. I don't feel so alone since joining SP and I'm not as nervous for after my surgery that I can come on here when I'm feeling lonly and in pain I know you guys will be here..

    You spiney's are very special people and I thank you from the bottom of my heart...

  • It all comes down at times (I think) is people can't relate. If they see a broken leg, or you were in a wheelchair, or you had burns or cancer, there is so much on TV, or in our daily lives that these people can relate too. Spine issues, Joe whoever breaks his neck, they fix him on TV, and you see him walking out of the hospital. That's the image most see...fixed...all better...back to your life!

    On here, we know that stuff happens even with a small injury. We know that each person reacts differently to pain. We know what constant nerve pains are... see? You're good here! :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • People see me with a cane, and ask what happened. I tell them "nothing." "the cane makes it easier to walk" that is all I have said, for 4 years.

    I stopped using the cane and I have had people coming out of the woodwork going "so your cured now - thats really nice"

    After the first 10 years - I never bothered saying much of anything.

    Now - you gotta be a friend - before I say much - and then I only talk, when there is no witnesses. I Always have plausible deniabity working on my behalf.

    Truth is - keep positive - no matter what is going on, it drives some people nuts! I love watching that myself!

    Have a great day!
  • like your signature Centurian
  • Nice topic, sorry I am getting in on the tail end. So much of what I wanted to add, has already been posted (that means, there's a whole lot of smart people on this forum, LOL) ;)

    Lisa, I am happy you found your way here, you are Sooo RIGHT, YOU have US, and there will always be someone here for you. Look at how many replies you have gotten.... WE GET YOU, because WE ARE YOU! We eat, live and deal with chronic pain daily.

    I pray your surgery is 100% successful and your recovery is speedy!

    Hang in there spine sister! We got your back....well sort of, I think HB Happy has your back (vertabres...) just trying to get a smile at of you! :)))

    Ps when we ask how are you doing/feeling, we want the true long detailed answer!

  • virginiap said:

    Ps when we ask how are you doing/feeling, we want the true long detailed answer!

    Your "ps" struck me. You know what Lisa, that is such a TRUE statement on the forums, and in chat! Humm.. very, very true! Thanks for posting that Virginia, it gave me a smile. 8>

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Hi Lisa,

    We understand exactly how you feel......we all "look so normal"....so how can we possibly be in so much pain. This is such a hot topic...

    Glad you found your way here...and as some one stated earlier...we do really care "how you are feeling"....and if it's a good day...we will celebrate with you..and if it's a not so good day....we all understand..

    Hang in there..you aren't on an island by yourself...we are all here with ya.
  • I was trying to give an example to my husband today about my pain. I found one of the pain charts that also gives the descriptions of the pain and it's effects on a person. Example: Level 7 Pain=Constant pain,only partially contained by opiods at the doses prescribed, with continuous limitations of activities of daily living. Level 8 Pain=Constant pain, frequently disabling making most activities of daily living difficult if at possible. With that info he then was able to compare himself in a category of pain during a flare-up of his diverticulitis. The only difference is that this pain of 7-8 is constant with me 24/7 with very few breaks. But now he can grasp on to a little of my reality. I just had a change in my meds that has helped a little with the burning I was experiencing in my calf and foot, which is a blessing. But other than that my hip, leg, buttock, and lower back are still killing me. He thought that since the meds were increased that it would really help the pain calm down some. So did I. He figures that since the burning is gone than my pain level must be down to like a 3-4 level now. I had to explain to him that if he was in a car accident and broke both femur in his legs, his hips, his right arm, and 3 ribs, He would be hurting pretty bad. A little time goes by and his ribs have now healed up pretty good and no longer hurt him like before. Is he now down to a level 3/4 pain? No, because his femurs, and hips, and arms are still killing him with pain. That is how my pain works. Yes I am thankful the burning issue has calmed down and I don't have to ice my leg and foot. But I am not healed. I know he just wants to help and wants the best for me. But I get frustrated. He lives with me and sees what I live with and how I try and make the best of it. I try not to give in and I don't want sympathy, but I get tired of explaining my pain. I don't explain to him that because he won't run that sweeper that I have to, and it really hurts me, but I do it anyway with no complaints. Just my body does. Ok I have to stop now because this is turning into a pity party and I was not counting on having one tonight. LOL Have a good weekend all....
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