| Chronic Disease A forum for the support of those suffering from chronic illnesses |
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17th January 2012, 03:51 PM
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Reps: 765,675,665,435,335,296 (power: 765,675,665,435,342) | | | I have different medical conditions than you, but I totally get what you mean. People tend to say the wrong thing when they hear you have health issues, regardless of what they are. And are all too happy to share what they "know" about it, even when they clearly know very little about it at all...
By the way, I am in love with your avatar. I adore Chip and Dale!
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Taking each day as a gift, the good and the bad, from God. And thanking Him all along the way. |
17th January 2012, 11:30 PM
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Reps: 9,223,372,036,854,775,808 (power: 9,223,372,036,854,804) | | Originally Posted by Fenny the Fox  I have different medical conditions than you, but I totally get what you mean. People tend to say the wrong thing when they hear you have health issues, regardless of what they are. And are all too happy to share what they "know" about it, even when they clearly know very little about it at all...
By the way, I am in love with your avatar. I adore Chip and Dale!
Hi, thanks for stopping by and posing this message. I enjoyed the reminder that I'm not alone. I so agree with what you've said here....so very true. At times we can get tons of unsolicited advice that is nonsensical that we didn't ask for and don't need. Thanks for posting and the nice comment about my avatar. Take care. 
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We cannot solve our problems with the same thinking we used when we created them.
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23rd March 2012, 09:15 AM
| | Veteran
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Reps: 9,223,372,036,854,775,808 (power: 9,223,372,036,854,812) | | | I could write a book about the stupid things people have said to me. One of the worst came a month after my diagnosis when a friend asked me if I was better now. With fibromyalgia you never look or sound "sick" so people are always thinking you are perfectly healthy. I told him that, yes, I was better - better than Adolph Hitler, but there were some days I wasn't even sure of that. That left him dumfounded.
One other problem comes when people ask me how I am. If I am honest with them, then I really bum them out. My best response is to tell them I am better than I deserve (which is true). |
23rd March 2012, 05:09 PM
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Reps: 9,223,372,036,854,775,808 (power: 9,223,372,036,854,804) | | Originally Posted by bbbbbbb I could write a book about the stupid things people have said to me. One of the worst came a month after my diagnosis when a friend asked me if I was better now. With fibromyalgia you never look or sound "sick" so people are always thinking you are perfectly healthy. I told him that, yes, I was better - better than Adolph Hitler, but there were some days I wasn't even sure of that. That left him dumfounded.
One other problem comes when people ask me how I am. If I am honest with them, then I really bum them out. My best response is to tell them I am better than I deserve (which is true).
I understand what you are saying. I can get pretty bad with all 3 illnesses so some days it is rather obvious I'm fairly ill. But yes, many times it's like an invisible illness and people just don't understand. I like you could right a book about all the insensitive, rude down right arrogant intrusive things that I've been told and that have happened to me. Things have gotten a bit better because I've been fairly assertive in some cases but yeah...
As well, I usually say fine especially with people who aren't genuinely caring or aware. If I say tired it usually means I'm down right exhausted cause I'm always tired and in pain. Hang in there, I know how you feel...and I say this because I truly do know how you feel.
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We cannot solve our problems with the same thinking we used when we created them.
Albert Einstein
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23rd March 2012, 05:42 PM
|  | sounds like somebody's got a case of the mondays
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| | Join Date: 29th September 2006 Location: Canada
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Reps: 180,549,427,303,068,448 (power: 180,549,427,303,080) | | I usually respond with "fine" too, particularly when it's people who don't know my diagnosis. At 37, I still get the "you're far too young to have anything wrong with you" comments, particularly because I work with a lot of seniors. Sometimes it's easier not to "go there". My bosses have gotten pretty good at figuring out when I'm really dragging my butt, though. One look at my face, and they figure it out. They're very supportive and offer me time off whenever I need it. They're such a blessing.
When I do have to discuss my illness with people, I try to keep the conversation as positive as possible. I truly am much better off than many with my disease. I don't need a wheelchair, and I can even workout still. And as new medical science comes available, sometimes the drug companies can't squash it down, and people can really find improvement, or maybe one day even a cure.
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23rd March 2012, 06:19 PM
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Reps: 9,223,372,036,854,775,808 (power: 9,223,372,036,854,804) | | Originally Posted by desmalia I usually respond with "fine" too, particularly when it's people who don't know my diagnosis. At 37, I still get the "you're far too young to have anything wrong with you" comments, particularly because I work with a lot of seniors. Sometimes it's easier not to "go there". My bosses have gotten pretty good at figuring out when I'm really dragging my butt, though. One look at my face, and they figure it out. They're very supportive and offer me time off whenever I need it. They're such a blessing.
When I do have to discuss my illness with people, I try to keep the conversation as positive as possible. I truly am much better off than many with my disease. I don't need a wheelchair, and I can even workout still. And as new medical science comes available, sometimes the drug companies can't squash it down, and people can really find improvement, or maybe one day even a cure.
It's nice to have supportive people in your life. I'm a bit short on that unfortunately but I'm managing ok I guess. Does make it easier though. I'm happy you are able to manage. Yes, there is more and more information coming out and this is good but further studies need to be completed to really get to the bottom of things. I have lots of problems with medications so alternative treatment like massage and food, supplements, physio. etc are like my meds. Well, I do take a few meds but for other of the symptoms like stomach and allergies. Oh well, i guess it comes in God's good time but yes, it can be rather tough all the same. God bless!
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We cannot solve our problems with the same thinking we used when we created them.
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4th April 2012, 03:03 AM
|  | Survivor
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Reps: 201,096,980,154,324,960 (power: 201,096,980,154,328) | | | I hate it when people tell me: "Be positive and push yourself". You learn to draw on your inner strength and believe in yourself, but I guess it still gets me down some days the things people say or expect of me.
God bless you Colleen.
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Last edited by Victorium; 4th April 2012 at 03:13 AM.
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4th April 2012, 11:24 AM
| | sounds like somebody's got a case of the mondays
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Reps: 180,549,427,303,068,448 (power: 180,549,427,303,080) | | Originally Posted by Colleen1 It's nice to have supportive people in your life. I'm a bit short on that unfortunately but I'm managing ok I guess. Does make it easier though. I'm happy you are able to manage. Yes, there is more and more information coming out and this is good but further studies need to be completed to really get to the bottom of things. I have lots of problems with medications so alternative treatment like massage and food, supplements, physio. etc are like my meds. Well, I do take a few meds but for other of the symptoms like stomach and allergies. Oh well, i guess it comes in God's good time but yes, it can be rather tough all the same. God bless!
I have lots of problems with medications as well, so the more natural route is definitely the better option for me too. My specialist is supportive of avoiding the drugs for as long as possible, but not up on any of the other kinds of treatments like diet, vitamins, etc. etc. So I'm on my own to navigate. And our medical benefits don't cover alternate treatments, so it gets pretty expensive. But we do what we can and depend on the Lord to provide according to His will. I have confidence that He will be glorified whether it be in healing or in my weakness.
Originally Posted by Victorium I hate it when people tell me: "Be positive and push yourself". You learn to draw on your inner strength and believe in yourself, but I guess it still gets me down some days the things people say or expect of me.
God bless you Colleen.
Yes, that's a bad one. I think people often say that because they're feeling awkward and don't know what else to say. They probably mean well, but that doesn't help you any.
There is a point where each of us has to say "I'm not going to let this disease define me". But no one else can tell you to do that. And frankly, I don't put much stock in inner strength. I am weak, but the Lord is strong. I'd rather depend on Him than me. And I'd definitely rather believe in Him than in me!
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4th April 2012, 01:36 PM
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Reps: 9,223,372,036,854,775,808 (power: 9,223,372,036,854,804) | | Originally Posted by Victorium I hate it when people tell me: "Be positive and push yourself". You learn to draw on your inner strength and believe in yourself, but I guess it still gets me down some days the things people say or expect of me.
God bless you Colleen.
Thank you; I'm glad to help. Yes, I understand. It is like they are indirectly saying we aren't motivated enough or lazy or not wanting to get better or that we don't have enough faith etc. This can be difficult to hear. I have also been literally told some of these things...directly. This shows a real unawareness of the illnesses we have and a real unawareness of who I am and my personality type. It can be rather discouraging. I think we need to keep in mind the amount of faith, perserverance and awareness it takes for us to live with chronic illness. God knows this; He knows our heart. If some people understood the amount of faith it took to be faithful during these times, times our entire body is in pain all day long for years with very little we can do, attitudes would change. I just wanted you to know you aren't alone. There are people who understand.
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We cannot solve our problems with the same thinking we used when we created them.
Albert Einstein
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4th April 2012, 01:44 PM
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| | Join Date: 11th February 2011 Location: Canada
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Reps: 9,223,372,036,854,775,808 (power: 9,223,372,036,854,804) | | Originally Posted by desmalia I have lots of problems with medications as well, so the more natural route is definitely the better option for me too. My specialist is supportive of avoiding the drugs for as long as possible, but not up on any of the other kinds of treatments like diet, vitamins, etc. etc. So I'm on my own to navigate. And our medical benefits don't cover alternate treatments, so it gets pretty expensive. But we do what we can and depend on the Lord to provide according to His will. I have confidence that He will be glorified whether it be in healing or in my weakness.
Yes, this is very difficult. There are many things we need to learn for ourselves. We need to be 'Jacks of all trades' to care for ourselves. It would be wonderful if opinions / policies and funding would change. This is something I'm trying to shine light on. There are some people in health services who do understand but it takes a long time to change policy and have disability agencies / insurance companies take these treatments seriously. Now with the economy problems etc, unfortunately these issues don't seen to be high on the list of priorities for politicians etc. This is unfortunate for all of us because here we are spending lots of money toward treatments that are much less effective or doing more harm in the long run. I can only speak about this in regards to where I'm from but I do here people from other provinces / countries expressing the same frustrations.
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We cannot solve our problems with the same thinking we used when we created them.
Albert Einstein
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