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Thread: how to deal with ppl who don't believe the pain

  1. #1

    how to deal with ppl who don't believe the pain

    i am struggling with a couple of ppl who really don't get the whole pain thing. they wear me out.

    i know. ignore them.

    are there good pain resources i can point out? i look and look but really, there doesn't seem to be a lot out there that really describes it.

    this is all pretty useless anyway. they won't listen and probably don't care. i'm tired of fighting all fronts.

    this is the only place i feel safe enough to say these things. cause i know so many here not only get it, but are likely living a bigger pain than i am, god forbid.

    i am very afraid of the future, which to me, is tomorrow or even tonight. i can't take the extreme pain i've been getting.

    just another rant from frustration.
    Last edited by cass; 03-25-2012 at 07:58 AM.

  2. #2
    Cass, I'm really sorry to hear what you're going through. As for resources that describe it, there is some of that on my website, www.painonline.org and the sister site (not mine) www.painonline.com
    In particular, check out http://painonline.org/description.htm

    BTW, do you know about the CPS Alliance on Yahoo? It's run by Mary Simpson who owns www.centralpain.org She has central pain from a stroke. Many of the other people on the Yahoo group are also stroke patients, but there are others as well, including people with SCI. It's at http://groups.yahoo.com/group/CPS_ALLIANCE/
    Just thought I'd mention it, it's a decent resource to find other people who can relate. I've been involved in her group pretty much since it started about 15 years ago as an email group. I'd encourage you to check it out.

  3. #3
    Senior Member NikkiMaya's Avatar
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    Cass,

    I really hear you! This can be one of the most difficult aspects of living with chronic pain. I have struggled with it for a long time. I don't have a spinal cord injury. I have an undiagnosed disease that started at age nine, causing serve chronic pain and other symptoms like spasticity, contractures, and muscle spasms. Now nineteen years later it has progressed so much that I use a wheelchair full time. When you are undiagnosed, it is so frustrating because there is no source to point to as the cause of the pain, leaving some to doubt.

    Just this week I went for a diagnostic evaluation at Massachusetts General Hospital in the Department of Neurology. The doctor I saw was very unsympathetic and didn't want to do any testing to look for the origin of the problem. I was left with a general feeling that he thought it was psychological.

    The conclusion that I have come to, is that I will never be able to satisfy some people, they will always doubt the pain I have. I just have to know that their assessment of me and my pain is unimportant at the end of the day, as long as they are not involved in making medical decisions that affect my life. As long as my immediate family and my friends support and believe in me, that is all that matters. I don't owe anyone explanations, and if someone tries to put me down or make me feel like this is somehow not real or is my fault, I don't need to waste my time on them.

    I do really commiserate with you as you have unsupportive relatives and it sounds like you have to be in contact with them. I truly feel that some people can never be convinced, and it might be a waste of time trying to prove your truly legitimate case to them. You know in your heart that you are suffering, and although their validation and support would be wonderful, if it never comes, hopefully you can find it in other places. We all need support after all!

    As for resources to explain chronic pain and awareness you could look to the American Chronic Pain Association: http://theacpa.org/default.aspx. I'm not super impressed with what they have up on their website but they do have some resources online that might be helpful to offer family members. You could also look on Amazon.com or another book seller and try a search like "chronic pain, family." You will get some results mixed in with many books on chronic pain, for dealing with chronic pain and family issues, something there might be helpful. I hope you find a resource somewhere in there that you can use!
    In our world constituted of differences of all kinds, it is not the disabled, but society at large that needs special education...to become a genuine society for all. -Frederic Major, Former UNESCO Director General

  4. #4
    Holding you tight girl. I know it is hard for any of us to open up about the pain and fears of what tomorrow will bring. If I mention to family I'm in pain, the comment is either ignored or am told it will get better. I know it won't so I rarely speak about it not wanting my family thinking that I am a complainer.

    So together we'll get thru it somehow. In the meantime, rest your head on my shoulder and let me wrap my arms around you tightly. You are loved deeply by many of us here.

  5. #5
    Cass.
    They will never understand till they spend a minute in your shoes. Thank god they dont have to as I would wish this on nobody. You are much stronger than they,and I wish you the best in dealing with them.As Jesus said as he hung on the cross"Forgive them father for they know not what they do" I am truly sorry for your pain. Take Care Craig

  6. #6
    Sorry for what u r going thru. I think showing other ppl's experience regarding pain helps. For years ppl have heard me say that I cannot do something because the AD is bad, but I never believed they understood. So I sent them a link from this site on AD and the side effects. Now they get that AD is not something I made up as an excuse, it is very real and intolerable.
    I think there are some ppl who try to understand and those who make it a choice.
    I wish you the best.

  7. #7
    Senior Member
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    Cass, I understand your frustration, but I will tell you honestly that I gave up several years ago thinking that anyone (other than here) would understand what I deal with daily on pain levels. It wasn't worth it to me to try to elucidate what my shoulders/hands/arms feel like to be met with "have you tried Motrin? It works well for me when I overdue." People simply do not get it, and the frustration of having my pain compared to a temporary flare by someone who spent the weekend hiking or gardening just made me silent on the whole issue.

  8. #8
    Senior Member reedyd's Avatar
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    I used to get irritated at people complaining about " oh my back " " oh my back " now its me and everyday I feel like I have a coal of fire in my spine. Nobody cares to hear excessive complaining so mostly I just suffer in silence. I don't worry too much about what people think. Its not their pain.

  9. #9
    Cass, my advice comes from a t-shirt I saw years ago. I laughed myself to tears over it at the time. It took me a few years to realize its wisdom and that is the most effective coping strategy I've ever found. I firmly believe it's the answer best suited to dealing with your son's relatives.

    Never try to teach a pig to sing.
    It will only frustrate you and annoy the pig.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  10. #10
    Love you, Bette!!!

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