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What NOT to say to people who are crhonically ill / disabled
- Thread starter Colleen1
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Tnmusicman
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Thank you and I'm sorry I didn't see this comment sooner. I appreciate your comment.
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For someone in chronic pain, there is no immediate remedy.
Within the Wisdom God has given me, it behooves me to say that long term perspective helps everything.
So if you were to finish your cross, many decades from now, what Angel would you most leave behind, for your works to follow you by?
I'm not sure if I qualify to answer that, since I don't really suffer chronically with pain, but for the necessity of an answer I say "the Angel of Trial".
Within the Wisdom God has given me, it behooves me to say that long term perspective helps everything.
So if you were to finish your cross, many decades from now, what Angel would you most leave behind, for your works to follow you by?
I'm not sure if I qualify to answer that, since I don't really suffer chronically with pain, but for the necessity of an answer I say "the Angel of Trial".
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The topic I was going to bring up in this post is how unpleasant it can be when someone responds to you and ignores you in their repsonse. So a benefits company can go on and on and on as if they've not heard a single word you've written / that's been submitted and completely ignore the real issue at hand. I can't begin to express how utterly frustrating this can be. It's like 
mixed in with 
and utter 
What does one even say except repeat themselves and get others to repeat the same as well. No wonder the real issues escapes them.
mixed in with and utter What does one even say except repeat themselves and get others to repeat the same as well. No wonder the real issues escapes them.
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I'm sorry you're having such a tough go with that right now, Colleen.
Thanks
I appreciate your kindness.
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renewed21
what are you waiting for?
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The topic I was going to bring up in this post is more about not being listened to. So a benefits company can go on and on and on as if they've not heard a single word you've written / that's been submitted and completely ignore the real issue at hand. I can't begin to express how utterly frustrating this can be. It's like
I so feel you Colleen. The last thing one needs while ill is to hastle with insurance benefits. But it always happens tha way.
:o:o:o
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Ugh I seem to have heard it all. "you're young you'll grow out of it"..."take these vitamins"..."you need to get up and move around". Or the best yet from my aunt who says she is a christian tells me to see a "healer who touches you and gives you herbs in vergas", WOW. No, I am sorry I will not grow out of this it's a condition for life and their is no cure and barely any treatments for my constant pain. All I can truly do is put my trust in Jesus and ask for his comfort and healing.
But to be honest as frustrating as it is I think that is hard for anyone who is not sick with a chronic illness to understand another persons feelings. So I try not to get too annoyed and just "yah yah sure" it off.
But to be honest as frustrating as it is I think that is hard for anyone who is not sick with a chronic illness to understand another persons feelings. So I try not to get too annoyed and just "yah yah sure" it off.
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Yeah, I hear you. It is hard and it must be difficult for people who aren't ill or in constant pain to understand just how much of a burden it is but I still hope I can be around people and escape inappropriate, insensitive, patronizing comments. If I can be around people and get back home without having experienced this and still have a smile on my face, it's a good day. I shouldn't let what other people say bother me but when one is in constant pain, it's harder to cope.
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desmalia
sounds like somebody's got a case of the mondays
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I'm still finding it frustrating dealing with some of the seniors at work sometimes. They don't all know my diagnosis and I don't like broadcasting it to everyone I see. It makes for very awkward conversation because there isn't really anything positive or hopeful you can say about it like, "I'm sorry to hear that. But isn't it wonderful they have this great new treatment now"?, etc.. Sometimes I think it would actually be easier if I was in a wheelchair because then they'd know something wasn't right. Not that I EVER want to need a wheelchair, but at least it's a visible cue for people. When I tell them I had a quiet restful Christmas they are puzzled because I'm "young" and should have a crazy busy time like many of them. The ones who know I'm not well are very glad I had a quiet Christmas. I was getting pretty burned out at work. It's a part time job, but stress levels are very high and that sucks every precious little bit of energy out of me!
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Do I ever understand where you are coming from. 'Invisible' disabilities can be difficult in that way. People see you and you look 'normal' and really we don't typically go out if symptoms have flared up badly. I've gotten some pretty patronizing statements and such tossed my way. It makes dealing with pain and illness all the more difficult. I'm so glad that more and more accurate information is out there and people are acknowledging things better ....at least in my little world but it did take some doing and assertiveness.
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motherprayer
Elisha
I have aspergers and fibromyalgia. Posting blind here. One thing that bothers me is when people try to analyse the accuracy of my diagnosis. Like "Are you sure? Did you get a second opinion?" I usually answer with, "Yes, the doctor WAS my second opinion. All he did was confirm that the symptoms I deal with daily are real and that they have a cause."
Arg.
Arg.
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Oh, I so know what you mean or they try to prescribe stuff for you.
Ugh! I usually say "yes, I've seen 'specialists' and have discussed my treatment plan with people who work with these illnesses". I emphasize this and they usually get the point....'Yes, they are specialized in this and 'you' are not.'
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desmalia
sounds like somebody's got a case of the mondays
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Welcome!
Yes, I've been through that too. It's a kind of instant denial because bad news is always uncomfortable. Plus sometimes people don't really believe some of these illnesses are real.
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motherprayer
Elisha
Welcome!
Yes, I've been through that too. It's a kind of instant denial because bad news is always uncomfortable. Plus sometimes people don't really believe some of these illnesses are real.
Exactly! It took me THREE YEARS to convince my own husband I was sick, that I wasn't claiming to be in pain just for attention! Thank God he recognizes it now!
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