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Thread: What Those with Chronic Pain or Illness DON’T Want to Hear You Say

  1. #16
    Veteran Member highlander's Avatar
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    Default Re: What Those with Chronic Pain or Illness DON’T Want to Hear You Say

    Don't even get me started on the word lazy. I can really get on a soap box about that one.

  2. #17
    Veteran Member Katee's Avatar
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    Default Re: What Those with Chronic Pain or Illness DON’T Want to Hear You Say

    I've had the pain of well-meaning people tell me i must not be praying "right" or studying the scriptures enough, etc, and that is why i don't improve. Eventually i reached a place where i could not even speak to one lady. I turned my back and would not answer her when she spoke to me. If you know me, you'd know that this is absolutely antithetical to my character (being rude) but i simply had no choice. Engaging her at all in any form wore me out, and was pointless. She knew what she knew and i was not going to change her mind, nor did i have the energy to converse.

    I also had a friend in college with Cerebral Palsy. She walked with crutches and struggled to do the most basic things, but she got good grades. She had some well-meaning boys approach her and tell her she could be healed if she only had enough faith. Several of us sat with her when she shared this later (i wasn't present when it happened). It was stupid and pointless and cruel. I will never forget, either, her saying that if she could be "healed" she wasn't sure she could take it because she knew how to navigate her life as it was and wouldn't be confident other ways. I think she felt some guilt with that, which i very much understand personally, now.

    The balance between positive thinking and living with reality is a challenging one. We have to deal with life as it is. Positive thinking can have a tremendous impact on how we handle reality, but it can't (usually) change what is.

    I'm struggling with that a bit now because i can't do events (the county fair, the car shows, the Renaissance faire, other events) without a wheelchair. I CAN walk it, but 10 to 20 minutes i my limit, and doing so expends all my energy. Not having a wheelchair means i can't go to events. But something about this is a problem for Duane and he is currently adamant against using a wheelchair. He says he won't go with me if i need one. I'm not sure how we're going to resolve this. I think it is the result of a childhood trauma for him - but i don't know how to "fix it."

    And then there was my father. I was 16 when i began struggling with Chronic Fatigue. There was some issue that came up, and i stated i couldn't function on 2 hours of sleep or something similar. He lambasted me for that, said i couldn't live my life being so lazy. I know he didn't realize what i was fighting, but that has followed me thru my life and i fight to not be "lazy." However, there are times when i know i'm being "lazy" - but they have nothing to do with the Chronic Fatigue. I don't call myself lazy for not having the energy to do dishes or something similar. I do think i'm lazy when i choose "the easy way out" - meaning i don't want to bother with something i don't like but could do. Once again, this is a balancing issues, because sometimes i legitimately cannot do something, and sometimes i'm taking the easy way and being lazy.

    But then, we all have our different challenges.

  3. #18
    Veteran Member Aaltrude's Avatar
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    Default Re: What Those with Chronic Pain or Illness DON’T Want to Hear You Say

    I have been very fortunate to escape any of these type of comments and accusations, directly at least. Who knows what some people may have been saying behind my back.

    This topic reminds me that I am seeing reports from an increasing number of people who have cured themselves of a multi system illness using the Gupta Amydala Brain Retraining Techniques. The successes I have been hearing about are making me consider trying to track down a copy of the program to give it try. When I get a chance, I will try and track down more information to post in the Multi System Illness forum but for now, here is a start.
    http://www.guptaprogramme.com/html/explainCFS.asp

  4. #19
    Veteran Member mellowsong's Avatar
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    Default Re: What Those with Chronic Pain or Illness DON’T Want to Hear You Say

    Very nicely said Pattypans. Katee, I too had to walk away from certain people at my church and online for that very reason. I realized after a few years of it, that no matter how Godly they were (or thought they were) that if they were causing me increased sadness and heart pain, then it wasn't God's message to me. Anything that inspires unreasonable guilt and expectations is not a good message no matter what the person giving it thinks...and that goes for any of these comments, not just religious ones.

  5. #20
    Veteran Member bmc65's Avatar
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    Default Re: What Those with Chronic Pain or Illness DON’T Want to Hear You Say

    Mellow, Katee, not always but in many cases, the people who spout God the most seem to understand God the least. Sometimes it's difficult to walk away from someone, but when they are toxic, it's the right thing and frees up your time and energy for nourishing people to inter your life. (I know I'm echoing what's already been said).
    Aalturde, thanks it will be interesting to see more.
    On me, I went to see my chiro last week and yesterday. (Hadn't seen him in 9 yr). Man's a genius. I'm about to suggest he go into teaching when he's ready to retire. Anyway, I told him yesterday about my new dx and of course he got busy muscle testing me. Gluten, lactose, casein, and caffeine all tested as problematic for me. Then he tested me for some herbs I've never heard of. These are produced by a family business that muscle tests all there herbs before bottling them. Anyway, I tested for two that were helpful. One he was out of, the other is Takesumi. We'll see how it goes.
    I adore him though. He used to do deep tissue, but now does acupuncture, He does even more mysterious things but hasn't used these other techniques on me yet. He does little actual adjusting and even less on my spin anyway. He adjusts my hips and shoulders... you name it. Anyway, I don't think I can deal with giving up coffee and dairy right now. Getting rid of the gluten is enough of a challenge for now, and he agreed that the dairy and caffeine piece may go away once the gluten bit is healed. Anyway, I'm off subject, but I just wanted to tell you guys about this guy. I'm glad he is back in my life.

  6. #21
    Veteran Member mellowsong's Avatar
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    Default Re: What Those with Chronic Pain or Illness DON’T Want to Hear You Say

    He sounds really good bmc Glad he is back in your life too! I *inally gave up dairy for good in January after a year of trying to convince myself it wasn't a problem. I have muscle tested coffee a gazillion times and it says it's OK for me. At this point, not sure I would/could give it up if necessary. Actually I would, lol. Right now, it definitely improves my quality of life and multiple experiments have not shown any change in symptoms except increased fatigue and needing to use the inhaler/nebulizer more, not less. So, right now, coffee is medicine

  7. #22
    Veteran Member highlander's Avatar
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    Default Re: What Those with Chronic Pain or Illness DON’T Want to Hear You Say

    Bmc that's really good news and I'm happy for you.

    Katee, Mellow...those people who tell you you're not praying "right" or however they phrase it are just immature souls (regardless of their human age) who haven't a clue as to what they're talking about. I know they're annoying because I grew up around people like that and Colorado Springs has quite a few people like that. On their little pre-school level I think they really believe they are trying to help. I have found it's best to just avoid them. They will eventually learn but it's not something I have the patience to stick around for. On a spiritual level it's like they just learned that 1+1=2 and think they can go explain something to someone who might be a mathematics major at MIT.

  8. #23
    Veteran Member Aaltrude's Avatar
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    Default Re: What Those with Chronic Pain or Illness DON’T Want to Hear You Say

    Quote Originally Posted by highlander View Post
    Katee, Mellow...those people who tell you you're not praying "right" or however they phrase it are just immature souls (regardless of their human age) who haven't a clue as to what they're talking about.... They will eventually learn but it's not something I have the patience to stick around for. On a spiritual level it's like they just learned that 1+1=2 and think they can go explain something to someone who might be a mathematics major at MIT.
    Good point highlander.

    I too had to walk away from certain people at my church and online for that very reason. I realized after a few years of it, that no matter how Godly they were (or thought they were) that if they were causing me increased sadness and heart pain, then it wasn't God's message to me. Anything that inspires unreasonable guilt and expectations is not a good message no matter what the person giving it thinks.
    I'm glad you felt able to walk away mellow. It is much better for your own health and well being to put yourself beyond such negativity.

  9. #24
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    Default Re: What Those with Chronic Pain or Illness DON’T Want to Hear You Say

    Quote Originally Posted by Aaltrude View Post
    I'm glad you felt able to walk away mellow. It is much better for your own health and well being to put yourself beyond such negativity.
    So, so true. Not always easy (often because of our own unrealistic, self-imposed expectations of ourselves), but very important.

  10. #25
    Veteran Member mellowsong's Avatar
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    Default Re: What Those with Chronic Pain or Illness DON’T Want to Hear You Say

    @Aatrude: Yes, I'm glad I was able to walk away but it took a few years. I'm a much stronger person in many ways now.

  11. #26
    Veteran Member Maurya's Avatar
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    Default Re: What Those with Chronic Pain or Illness DON’T Want to Hear You Say

    Quote Originally Posted by highlander View Post
    On a spiritual level it's like they just learned that 1+1=2 and think they can go explain something to someone who might be a mathematics major at MIT.
    As some folks have said, before you go around giving instructions to people about the state of their enlightenment, you must make certain of the quality of your own enlightenment.

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