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Joined: Sep 2007
Posts: 140
Journeyman_AS_Kicker
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OP
Journeyman_AS_Kicker
Joined: Sep 2007
Posts: 140 |
There's something I need to get over here. I was brought up in a not very compassionate environment. I think this has caused me to second guess people that I hear complain a lot or that talks about having so many issues. My first feelings were that this wasn't just a group of people with a common illness but a bunch of people feeding off each other. It seems like there's a lot of posts where someone asks about a symptom and the same people all the time are able to relate to everything and have or had suffered from the same thing or say they expect to someday from their family history. I understand auto-immune diseases and its "ugly sisters" but it seems to me like hypochondria and Munchausen runs rampid in these halls. I'm sure the truth is somewhere in the middle but I have a hard time sorting it all out. Don't get me wrong, I need a community of people to help me through this and my cancer treatments. I can't do it alone nor do I want to try. Has anyone else had these thoughts as they first started to open up about what's going on with them?
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Joined: Nov 2003
Posts: 8,190
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Nov 2003
Posts: 8,190 |
Not quite sure what you are trying to say...it seems like you are saying that alot of the people here are hypochondriacs or munchausen, which can't be, mucnchausen is an illness where caregivers, usually Mothers make their children sick on purpose to the point they put their childrens lives at risk and is considered to be a mental illness...I dont think that has anything to do with the people here.
I am guessing you dont have much experience with forums, it is a place for support, friendship and information. If you feel like people here are hypochondriacs, just looking for sympathy or are constant complainers then you have the wrong idea and Im sure would offend ALOT of people here.
I know you are trying to understand but one thing you have to remember if you are not going thru it, then how can you know? How could you pass judgement on what someone is telling you, they are just complaining or it is just in their head?
You said you were fighting cancer, I would think you of all people would understand...I wouldnt ever question the hell you are going thru or have gone thru nor would I dare to say well its not as bad as he is letting on or well maybe if you had been a positive thinker you wouldl have never gotten cancer.
Im not sure if that has answered any questions, you have every right to ask questions but you have to remember putting down or insulting or trying to tell someone they dont feel what they feel or it is in their head is just cruel and it is rude.
I would think since you have been here reading thru the posts the ONE thing you could have seen is the hell alot of us go thru every day and the support when we try to rally around that person or persons to help make them feel better, the site here is sometimes the ONLY support people here get as their families and friends do not suport or believe in them.
I really hope you will do more reading and searching and try to show some support for us and not always try and make your posts make you and outsider or seem like you are insulting us, which you make me feel like, I hope I am wrong..you tell me.
Lisa
Speak kindly, Live simply, Care deeply, Love generously, and BLAH, HA, HA, LOUDLY! every chance you get.
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Joined: Sep 2001
Posts: 6,391 Likes: 1
Addicted_to_AS_Kickin
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Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 6,391 Likes: 1 |
Quote:
same people all the time are able to relate to everything and have or had suffered from the same thing
I used to work with a woman like this years ago...To the point that if someone made up something, she would say she had it.
I think you may find that any place in life that you go.
I am not saying some here are not in a lot of pain, they are.
I have seen first hand what AS can do to you, when I would have to carry my child to a warm tub every day just to get him moving.
Sometimes we say something in our mind sounding one way, and when others read it, it is a totally different tone in their head. You cant put emotions on a typed page, and it can be misunderstood at times, no matter how innocent you meant it to sound when you typed it. Others may read it exactly the way you meant.
I wish you much success with your cancer. I have lost too many very dear people in my life to that horrid disease.
I also hope that your AS can be kept under control. You have enough to deal with.
The best of luck to you.
Lori
"You will find as you look back upon your life that the moments when you have truly lived are the moments when you have done things in the spirit of love........."   
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Joined: Sep 2007
Posts: 2,074
Major_AS_Kicker
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Major_AS_Kicker
Joined: Sep 2007
Posts: 2,074 |
Hi Thomas,
I pondered replying to you, and decided just to ask you a question. I hope you respond. My question - "What possible difference could it make to you if someone has the symptoms they describe or doesn’t have them?"
Keep the Faith!
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Joined: Sep 2007
Posts: 140
Journeyman_AS_Kicker
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OP
Journeyman_AS_Kicker
Joined: Sep 2007
Posts: 140 |
Quote:
Not quite sure what you are trying to say...it seems like you are saying that alot of the people here are hypochondriacs or munchausen, which can't be, mucnchausen is an illness where caregivers, usually Mothers make their children sick on purpose to the point they put their childrens lives at risk and is considered to be a mental illness...I dont think that has anything to do with the people here.
I am guessing you dont have much experience with forums, it is a place for support, friendship and information. If you feel like people here are hypochondriacs, just looking for sympathy or are constant complainers then you have the wrong idea and Im sure would offend ALOT of people here.
I know you are trying to understand but one thing you have to remember if you are not going thru it, then how can you know? How could you pass judgement on what someone is telling you, they are just complaining or it is just in their head?
You said you were fighting cancer, I would think you of all people would understand...I wouldnt ever question the hell you are going thru or have gone thru nor would I dare to say well its not as bad as he is letting on or well maybe if you had been a positive thinker you wouldl have never gotten cancer.
Im not sure if that has answered any questions, you have every right to ask questions but you have to remember putting down or insulting or trying to tell someone they dont feel what they feel or it is in their head is just cruel and it is rude.
I would think since you have been here reading thru the posts the ONE thing you could have seen is the hell alot of us go thru every day and the support when we try to rally around that person or persons to help make them feel better, the site here is sometimes the ONLY support people here get as their families and friends do not suport or believe in them.
I really hope you will do more reading and searching and try to show some support for us and not always try and make your posts make you and outsider or seem like you are insulting us, which you make me feel like, I hope I am wrong..you tell me.
Lisa
Just to make a few "for the record" statements.
What you are referring to is MSbP, Munchausen Syndrome by Proxy. By proxy meaning a caregiver feigns or induces an illness in a person under their care rather than themselves which would be just Munchausen Syndrome.
As to my experience with forums I happen to own two highly populated forums completely unrelated to these illnesses so I'm very familiar how they operate and how people can easily take what is written out of context. As Sassy pointed out:
Quote:
Sometimes we say something in our mind sounding one way, and when others read it, it is a totally different tone in their head. You cant put emotions on a typed page, and it can be misunderstood at times, no matter how innocent you meant it to sound when you typed it. Others may read it exactly the way you meant.
I think I may be taking what others have written out of context and am not able to completely read the intent of their words. My whole point here is not to insult people but to be honest so that I may better understand. I already pointed out that I have issues with compassion and hope to tackle that as a secondary benefit to being part of a community such as this.
I think you suggested I do many of the things which I already pointed out about myself and what I need to work on. I'm sorry if I touched on a sensitive issue.
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Joined: Sep 2007
Posts: 140
Journeyman_AS_Kicker
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OP
Journeyman_AS_Kicker
Joined: Sep 2007
Posts: 140 |
Quote:
Hi Thomas,
I pondered replying to you, and decided just to ask you a question. I hope you respond. My question - "What possible difference could it make to you if someone has the symptoms they describe or doesn’t have them?"
It would make a big difference actually. It would affect how I might deal with a symptom I could have by trusting that persons experience. If they haven't truly had it than the information they give could be unhelpful or even harmful.
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Joined: Nov 2001
Posts: 18,187 Likes: 7
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Nov 2001
Posts: 18,187 Likes: 7 |
Hey there, I'll try to put some perspective on this. You came here because you needed support in learning to cope with and live with a disease. It's entirely possible that many of your symptoms were such that no-one in your life understands in the least how you feel. So, one day, you come to KA and say, "This disease is causing this, this, this, this and this. I never know when I go to bed at night if I'm going to be able to move in the morning. I never know when I eat something if it's going to affect my mobility. And what hurts like hell one day, feels fine the next." Everyone here has experienced this, daddio. In our own ways and to our own levels of degree. My visible physical presentation isn't anywhere near as bad as that of some here, but my invisible symptoms have been experienced by pretty much everyone here at some point or other. In a support group, part of the dynamic is that when someone expresses pain or anger or anguish, or reports a symptom that is new, someone else has probably experienced it. In this case, we have over 4,000 members worldwide, with a few hundred who post every day. The odds are that a fair few are going to have had similar experiences. And this being a support group, the odds are even greater that they are going to post their sympathy, support and understanding of those experiences. The other part of the support group dynamic is doing what you just did. We'd all like to think that support is always positive, but it isn't. In fact, I'd be scared if it were. Why? Because, for this to be a true support group, we must feel free to express our feelings and thoughts in an honest way ... bearing in mind that due to the written/online nature of this support group we cannot hear vocal inflections/tone of voice, see facial expressions or read body language. Misunderstandings of intent are frequent, but overcome with understanding. You have been honest with your concerns, and as someone new to KA, not understanding fully the nature of this forum, your concerns are valid and understandable. However, one thing that you will come to learn is that we are more than our symptoms. We are a family that truly cares about one another. Some have horrible symptoms from a multitude of autoimmune based disease (such is the nature of autoimmune disease). Others, don't. Welcome to KA.  Hugs,
Kat
A life lived in fear is a life half lived.
"Strictly Ballroom"
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Joined: Sep 2007
Posts: 140
Journeyman_AS_Kicker
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OP
Journeyman_AS_Kicker
Joined: Sep 2007
Posts: 140 |
Quote:
Hey there, I'll try to put some perspective on this. You came here because you needed support in learning to cope with and live with a disease. It's entirely possible that many of your symptoms were such that no-one in your life understands in the least how you feel.
So, one day, you come to KA and say, "This disease is causing this, this, this, this and this. I never know when I go to bed at night if I'm going to be able to move in the morning. I never know when I eat something if it's going to affect my mobility. And what hurts like hell one day, feels fine the next."
Everyone here has experienced this, daddio. In our own ways and to our own levels of degree. My visible physical presentation isn't anywhere near as bad as that of some here, but my invisible symptoms have been experienced by pretty much everyone here at some point or other. In a support group, part of the dynamic is that when someone expresses pain or anger or anguish, or reports a symptom that is new, someone else has probably experienced it. In this case, we have over 4,000 members worldwide, with a few hundred who post every day. The odds are that a fair few are going to have had similar experiences. And this being a support group, the odds are even greater that they are going to post their sympathy, support and understanding of those experiences.
The other part of the support group dynamic is doing what you just did. We'd all like to think that support is always positive, but it isn't. In fact, I'd be scared if it were. Why? Because, for this to be a true support group, we must feel free to express our feelings and thoughts in an honest way ... bearing in mind that due to the written/online nature of this support group we cannot hear vocal inflections/tone of voice, see facial expressions or read body language. Misunderstandings of intent are frequent, but overcome with understanding. You have been honest with your concerns, and as someone new to KA, not understanding fully the nature of this forum, your concerns are valid and understandable.
However, one thing that you will come to learn is that we are more than our symptoms. We are a family that truly cares about one another. Some have horrible symptoms from a multitude of autoimmune based disease (such is the nature of autoimmune disease). Others, don't.
Welcome to KA.
Hugs,
Kat [Inanna ],
I got a lot out of that. What you said is very helpful. Thank you...
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Joined: Sep 2001
Posts: 6,248 Likes: 5
Addicted_to_AS_Kickin
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Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 6,248 Likes: 5 |
Thomas
You are probably gonna take a bit of heat for this post. I don't think that's your intention and I don't think you were looking to slight anyone here or the degree that they are suffering with AS.
I understand hestiancy in joining any support group because before I ever posted here I thought the notion foolish and in all honesty I didn't have a legitimate reason for feeling that way except that ... well it wasn't for me and it wasn't how I grew up. I grew up in pain since I was 10 years old and I grew up in the wise tradition of "suck-it up and get to work." That didn't work so great.
Well since I've been here I probably posted about 4000 or so times. NOt so much lately but I found folks who could sometimes identify with what I had and at other times they hadn't the foggiest notion what I was talking about.
I found people willing to playfully insult me and congratulate me on un-AS related life events. I'm not sure what it is you expect from this place but give it a chance.
Most of my early posts here had little to do with AS and little to do with me telling about my symptoms. Folks who wanted to respond to those posts did. Folks who didn't care passed on the opportunity to reply. Its realy a terrific little exercise of one's right to express themself in a simple way.
Appreciate folks who respond to you in a way you can identify with. MAybe there will be a lot of people who do that. Maybe there won't. Give it a try. THe people here when I first showed up amazed me. The folks who have come and gone since then similarly showed me how genuinely compassionate and wise they could be.
There is a great tool here because no matter what else this place offers it offers a lot of people with different opinions on the best way to treat this thing. That means ideas abound. Pick the one's that you like.
you ended your post with this question
"Has anyone else had these thoughts as they first started to open up about what's going on with them?"
Well, implicit in that question is the statement that you are going to open up about what's going on with you. Maybe you do that first and see how people respond. My bet is they surprise you.
To be truly honest after all these years here. There's still only so much I relate about my AS. Probably because I do my best fighting AS by denying what its done to me and because I was raised in that wise tradition of sit donw shut up and tough it out. I'm pretty sure it wasn't a wise tradition.
Best wishes on your fight and I hope you stick around.
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Joined: Sep 2007
Posts: 140
Journeyman_AS_Kicker
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OP
Journeyman_AS_Kicker
Joined: Sep 2007
Posts: 140 |
stevec,
you touched on many times that i can relate to. it seems that we have a lot in common. thank you for your reply.
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