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worst thing someone has said to you on your pain journey?



  • Rheumatologist diagnosis: "Patient has the equivalent of a third-degree burn on her soul". Asked me if I'd accepted Jesus. YES I have this on an actual record!

    Sure did suffer childhood abuse, but I also have Ehlers-Danlos Hypermobility Syndrome, an inherited collagen defect.

    Which one do you think came first?
  • I'm new, just had to respond to this one. my sister said my pain from RA was cause by keeping my feelings inside,"What?" people are so clueless when it come to chronic pain.
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  • Comment: "So the pain's all in your head then?"
    Reply: "Yes, because that is where my brain is"

    Comment: "Come on, you've got to get yourself sorted, back to normal"
    Reply: "This is normal now"

    Comment: "Sticky mattress syndrome again?"
    Reply : not publishable

    Comment: "You've got to find out what it is"
    Reply: "IT'S CHRONIC PAIN SYNDROME!!!!!" Ok got a little frustrated at the 70th repetition!

    Comment: "So you're back up and about now then"
    Reply: "I've been up and about all along on my good days"

    I can only keep hoping that the really silly ones are said on a good day so that I have a chance of coming up with the best response - and console myself with thinking later on a bad day and saving the response for next time.
  • William GarzaWilliam Garza TexasPosts: 3,870
    edited 08/13/2014 - 10:48 PM
    slow getting up from moms bedside, after niece had told me to get out of her way..and after helping paramedic ,move her to get comfy at a bad angle
    her precious highness comes waltzing in and promptly tells me to move
    she had a accident that broke her neck years ago, almost paralized
    all the insurance and the best of care have her pain pill and doc free
    i got screwed.
    sha askes
    whats wrong with you!!!
    as if she hasnt seen me in years at times on a cane, or otherwise in pain
    told her that my back hurts
    she said what happened
    told her a drunk dri..
    eye rolls and exasperated , exaggerated, inflated importance

    queeney almost got an earful right then and there

    she said "nothing wrong with you...

    reeaaaallly now

    cumutavely myback has more total damage than she will ever face
    i have face pain longer, in quality and quantity
    and ime still degenerating


    some people are as educated as Hawking
    and stupid as a box of lint

    sad ,
    William Garza
    Spine-Health Mod

    Welcome to Spine-Health

  • Who are making these types of comments. How could they possibly understand how we feel if they haven't felt it themselves?

    I used to get accused of "faking it" to get out of doing things by my ex husband.

    I had to see a different doctor once because my normal one I see was booked up for the week. This person was VERY, very dismissive of me and my pain. It wasn't any one thing she said it was her general attitude towards me and I was treated like a drug seeker (although I did NOT come in there asking for anything by name or anything) I just came into the office in a lot of pain.
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  • EmeraldEEmerald Posts: 23
    edited 10/03/2014 - 4:34 AM
    I think the worst was my own brother and sister telling me that I am a burden on everyone and a piece of EDITED the day after my dad died because they had to take me to pick up my prescriptions. Mind you- they have never done one thing for me other than that so I don't know how I could be a burden on them. Maybe they were grieving and it came out in anger toward me but I was grieving too and it sure has put me back in my recovery. Now, I won't even eat a family dinner with them and they don't care. Never apologized. Nothing.
    Also had a bad reaction to Soma where it would knock out my speech and was having a hypoglycemia attack on top of that.
    Got pulled over by police trying to hurray to the gas station to get a candy bar to raise blood sugar and got ripped out of my car, treated like a drug addict who was overdosed and taken to the hospital. Luckily my speech came back right when they were holding me down to stick a tube down my throat. I told them what was going on. The doctor checked it out and came in with a candy bar and apologized. Made me eat the candy bar before he released me.

    Post edited for language- use of foul language is not permitted on Spine-Health
    God Bless all of us who are suffering with chronic pain and chronic health conditions.
    With Love and compassion,
  • I didn't even think I was complaining.... Oh well! Good job they got me wrong and I have a good positive outlook and a whole lot to live for. Sometimes family says the most hurting things.
  • When I was in my early 20's I started having severe pain in my back and my legs. I even lost feeling in them from time to time. Went to see a back specialist and after the poking and prodding and several scans and xrays I was informed that there is no magic bullet to fix this. Never even told me what "this" was. Found out later it is spondylolsis and scoliosis. Not sure why this hurt so much but it has stuck with me over the years.
  • My mother growled at me, "It can't be that bad!" I was merely sharing some frustrations about the protracted nature of nerve healing post-ACDF. And I thought mothers were supposed to be nurturing. Silly me!
  • I guess I have had chronic pain for about 17 years now dunno exactly how you would define chronic, it used to come and go. for about the last 2.5 years it just came for a visit and never left. to make a long story short, a small issue became several large issues and its been down hill since then. ive been reading this particular thread and in a strange way it made me feel better. ive heard most, thankfully not all, of these things from friends and family. everything from, "This will never heal" to "You'll be alright, its not that bad." That used to make me really depressed, and it was so hurtful to hear from the people who are supposed to love you. Then it made me angry to think that the only light at the end of my tunnel was the hope that one day, not today probably not tomorrow either but one day I might get some relief and actually have a good day again before i die. That was the only hope i had and they just walked up, knocked it down and stomped it in the mud. And just who are they to do that? The unmitigated gall! It took all the strength I had not to wish my pain on them and then just take a stick and beat them for good measure. Then I remembered that they dont understand, and I dont want them to. I have to remind myself of that almost daily, sometimes its a struggle, sometimes its just annoying. I found that rather than having one hope upon another, a goal helps me deal with it best. Now when they start in yet again, my eyes glaze over and my mind at least wonders to that happy place at the park where i can just plug in my ear buds, turn up the volume on my favorite songs and walk miles while i watch the sun come up. I made up my mind that eventually my body would follow where my mind leads, I will walk miles again. I may be in tears the whole time, I may have to crawl parts of it but i will do it and they will either help or i will stomp a path through them. At least thats my goal.
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