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It Hurts

I don't think I need to tell anyone how difficult it is to live in pain day in and day out.
The physical pain at times can consume everything we do

For those that are just beginning to experience chronic pain it can really turn your life inside and out.
And for those of us who have been living in chronic pain for 5,10,15,20 or more years , it still doesn't get easy.

But its the emotional side of living in pain that is so difficult. I started to write a list of actions that I think most of us can relate to

  • - You don't look sick, come on join us
    - It will be a 3 hour drive and then a lot of standing and jumping, you will love it
    - They have a double feature at the movie theater. Just think 5 straight hours of JAWS!
    - All of us are getting together for a fun volleyball game, lets go
    - Grandpa/Grandma , Mom/Dad, etc. Pick me up as I run into your arms in throw me into the air
    - We are all going dancing tonight, put on your dancing shoes
    - Oh, are you going to complain again
    - I am tired of hearing you whine about your pain
    - Forget the cane, thats only for old people
    - Oh great, I have to do the shopping, cooking, cleaning, you dont do anything
    - This is nice, another weekend and we cant go out because of you
    - So, what are you going to do now, pop another pill
    - I don't really think you have that much pain
    - Get over it
    - etc
I realized that this list could go on for pages and pages. I dont know if people are insenstive or that they just
don't understand. But I can tell you how many hours I know I felt really down and alone by comments made or
by actions others wanted to do.

I think this song by Peter Paul and Mary summarizes some of what we understand Here are just some of the words
Peter Paul and Mary said:

Don't laugh at me, don't call me names
Don't get your pleasure from my pain
In God's eyes we're all the same
Someday we'll all have perfect wings, don't laugh at me
The song : Dont laugh at me
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


  • Betty65BBetty65 FloridaPosts: 83
    edited 09/15/2015 - 12:01 PM
    I just now returned from a two-day car trip from Florida to Missouri. I really wanted to go because it meant spending that time with my oldest daughter, who is newly married and has been away from me for almost a year. (She had flown down to pick up her car.) She left me at the airport in St. Louis and I took a two hour plane ride to Orlando, and another hour drive to my house.

    She was very supportive of my having to stop every hour or so to walk around, and I really made the best of things. But now that I'm home, I'm wondering if my increase in pain is both physical (from the travel) and emotional (from having to leave her).

    I think I will allow myself a day or two of doing "nothing" just to heal a little bit. I suppose I'm looking for permission from my fellow spineys....

    Thanks all.
  • 2dgs4cmpany22dgs4cmpany Posts: 200
    edited 09/15/2015 - 12:11 PM
    I don't know why, but those four words are really getting under my skin. They are making me crazy. They make me feel isolated and alone. They usually come after: sorry you couldn't make it, but we are "glad........

    Or, "we hope...

    While these four words are for the most part said in sincerity, I can't help but feel when I hear them that the person has no idea of what is going on with me. Somehow I have not conveyed that I have chronic, nonstop pain. If I look good or ventured out..it has been meticulously calculated from the safe outfit to keep my tens unit on, to my cane and shoes so I don't trip, to the place I've agreed to go to has up front handicapped parking. I calculate if the tables are too close together to make going to the bathroom without causing a serious traffic hazard with fast paced wait staff inevitable. I've plotted my medication so that I can sit for the time frame we agree on. I've cleared my day for when we complete our time together so I can crawwwwwwl into bed and lay on my heat pad. This is generally the time when they have said they are glad I'm feeling better. Nope, no I'm not. I just was able to be inline with the moon, stars, jupiters orbit and two days of planning.

    More often than not its hope you feel better, we will miss you. Oh, are you sure you can't make it? You can lay on the couch during the party?

    Somehow I have not explained or shared or communicated to them. But the thing is, I have. It is beyond frustrating. Don't they understand that I hope I feel better soon too?!? Grrrrr

    It hurts and makes me feel so alone.
  • itsautonomicitsautonomic LouisianaPosts: 1,813
    Empathy, it is one of the things lacking most in people. Everyone suffering should be viewed with same eyes as a child, when a child suffers people and doctors truly care. When grown ups suffer its often judged negatively and the preconcieved ideas cloud views. Its very tough for spine pain especially or other invisible illnesses, the people looking at you are either healthy or had some type of back pain and are better and both of them can be the worst because healthy people cant understand and people better often think "I got better why cant they". Only those living it truly understand
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • Betty65BBetty65 FloridaPosts: 83
    Your comments are so true. I'm finding myself thinking "they got better, why can't I?" This is especially true of two people I know who also had back problems, gotten one injection, and are now pain free. I'm wondering why this doesn't happen for me.
  • gfishggfish Pittsburgh PAPosts: 160
    Some of those lines have been said to me many times. I get the..Are you still in that much pain. How much longer you going to be like that. Your not back to work yet, Why? The one I have to bite my tongue is, " John" had his back done and he is fine. And didn't "Joe" have some type of back surgery also. I could scream! Im not Joe or John!!  I would rather they say nothing.  Thanks Ron, This is the only place where people understand.  
    Greg fisher
  • dilaurodilauro ConnecticutPosts: 9,865
    I know exactly what you feel.  Normally, I can keep my composure, but when I hear from others, 
    Oh, back surgery is no big deal,  He came back to work in 2 weeks, Gees, what is he complaining about, I had surgery and was fine in two days, etc etc

    One of those come from my neighbor.  She has seen me in pain and suffering after most of my surgeries.  So, I figured she understood.  She had a one day surgery to do some scraping on her back, a minimal invasive surgery, to this day, she has never told me what it was.  But, I do know that she has said to other people,

     I dont know what all the fuse is about back surgery, Ron, probably just cant handle it, I had it and it was a piece of cake, Ron, probably is just looking for sympathy.

    y wife wanted to strangle this neighbor, but I said, forget it, she wont understand and doesnt want to understand.
    There will always be people like that.

    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
  • I think its primal instict on one part..
    The herd separates itself from the weak and wounded as a survival mechanism.
    They only think they know..they may have had one bad hurt in life..and relativistically speaking..that covers it.
    They are glad its us.not them and they revel in it.
    They are far removed from reality..in a make believe world where life wont get them.
    William Garza
    Spine-Health Mod

    Welcome to Spine-Health

  • Faith981Faith981 Posts: 78
    edited 02/14/2016 - 3:02 AM
    I understand Ron. All those lines in your first post ring true to someone who has  had pain at varying levels over many years. Since you are a moderator here and you still feel that way after knowing you are absolutely not alone is a strong statement. That even though we know not to let peoples words and gossip hurt us they do sometimes. I try to remember that saying, "No one can make you feel anything unless you allow it." It sounds so annoying when you are going through it though doesn't it? But when I can get behind that statement, even for a little while it helps me.
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