Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group The problem with an illness support forum

Hi Thomas,
I think what I hear you saying is, having grown up in a "not very compassionate environment", it's hard for you to understand compassion. We can't understand what we haven't gotten ouselves. If you haven't experienced people responding with kindness, sympathy and understanding to your pain, then it's going to be unfamiliar territory for you and seem confusing, or seem like just putting up with whining.

That's okay. I'm impressed with your openness in sharing your initial impression and I'm also impressed with your struggle to perceive things differently when you say "I'm sure the truth is somewhere in the middle". Your mind is passing judgment on what is perceives as complaining at kickas, but another part of your wants to give understanding.

And more than anything else, another part of you wants to receive understanding and help. If I understand you correctly, that's what you were saying when you said, "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".

In the midst of the pain and fear of AS and cancer, you've realized you can't do it on your own, even though that's what you've always been expected to do.

Asking for help is a sign of strength, not weakness. Having the courage to come to kickas and say, "I need help," shows that you are strong enough to care about yourself and strong enough to get what you need to help yourself.

Stick around. You'll find a wonderful family of caring people at kickas, people who are willing to let you cry out in pain when it gets to be too much and people who are able to help you figure out how to help yourself.

We also can't give what we haven't received ourselves. As you let others support and encourage you as you go through these difficulties, your day will come in turn to help others. You'll be passing on what you have gotten.

I appreciate your honesty as you struggle with what is new territory for you, both with your diseases and with your emotions.

Karen

Welcome Thomas

In keeping with my signature block:

I came here and got the most info/help/relief/hope that I have found in decades. I started 3 months ago.

I only hope to help and encourage at least one person facing what I have gone through. That is working.

If I can help you - please let me know.

Brian

The forums that you own...are they like this? or how do they compare with this site?

I don't think you are really trying to be rude or insulting, I just think it kind of comes off that way at times.

I am not trying to hurt your feelings either, just trying to explain how I feel.

I am glad that you are here and you are interested or curious.

Hopefully you will find the answers you are looking for.

Take Care,

Lisa

Thank you for posting this. The answer is simple. KA was created by and for people who have AS. It became a reality because of a tragic event in the life of one person. Our founder had a small website with an email group and an online support group of less than 100 members, who exchanged ideas,tears and laughter with those who understood the pain and isolation of a disease that very few knew about. As part of his group, some of us tried to help him keep it going but it was not to be...he was too sick. At the time I found his site I was planning my death in Mexico. The pain plus the ignorance about what was going on inside my body made me wish for freedom even if it meant an end to my life. When you "hit the wall" little matters except a scrap of hope that will keep you going. ASWeb.com was that to me. It took only one day before the plans of a death became a fight to keep the group together. It didn't matter to me one darned bit why people were posting because I had never met anyone who had AS and I was thrilled just to find someone who could tell me what the hell it was. I want almost as crazy with joy as I had with lost hope.

We now have almost 5,000 members who have found something to keep them going as they suffer this God awful disease. Information, laughter, friendship, a shoulder to cry on, a joke to make you laugh, a story to reenforce your faith, it doesn't matter. You will either find something that makes you want to stay or you won't and will leave to continue your quest. If you stay, you will find friends and a reason to fight the good fight. if you leave, you may find the same things in another place. In any case I know I'm not alone in wishing you well.

Hi,

As for the question you asked. Yes, I was a bit overwhelmed by all of the responses when I first arrived here, except I welcomed it. I was amazed by how many people could relate to me and my health conditions, especially since I wasn't getting support or answers prior to visiting. Though, there are still one or two things people cant relate to. I still never have met another AS'er and I've been dealing with AS since I was 10. I'm 36 now. It really bites to be alone in this world with a rare health problem, not having anyone to talk to that understands, so it's better to have someone relate to us. As a support forum in general, this is one of the best, because we are free to talk about AS-unrelated health problems too, as long at it falls in the forum guidelines.

I think there are very few people here that are hypochondriacs or munchausen. We're all in the same boat here, sharing the same symptoms, same complications, and same treatments. Everybody is different, but at the same time many of us can relate in many ways. For some people everything hurts and this disease has many symptoms. If I were to ask how many people here have AS and colitis, I think I would get more than 100-200 different replies. Take me for example, I come here to find people to relate to, and to help those same people in return. That's basically it, well...besides trying to make some friends. I never made something up in anything I've said about my health conditions. Everything wrong with me does show up in tests. These are not things my mind has created because I see it on the net, or see other people with problems. If a post has nothing to do with me, I either sit out of it or offer them my sympathy or condolences. I am one of the people that has a lot to deal with, because this disease has progressed into other related diseases, and even some normally unrelated problems too. My treatment has not kept my AS under control all these years, so I have alot to offer in in my posts, whether it's me 'complaining' about something new, or sharing my own experiences with the same problems someone else having. I have like around 100 different symptoms of all my health conditions combined, so yeah a lot of people can relate to me, just as easily as I can relate to them. At least they (and I) are comforted in knowing they (we) are not alone. There have been a few occasions where I made posts and nobody was able to relate to them, only because my post was about something too much unrelated. Being here for one another and looking out for one another, and sharing our related problems, is a part of what good caring people do for one another. Many people like myself don't have support elsewhere in our lives, so that's why some of us are here daily to talk about so many things. I make it a point to visit here...and half the reason i do is because i don't want people to end up like me with their AS out of control and spines fused causing other problems, and of course I also need my share of support too. I didn't get any support until I found KA to be honest. Support doesn't always have to be about questions and direct answers either. We're family here and we talk to one another as family. If we didn't support each other the they way we do now, by letting them know that we can relate, then there would be hundreds of posts going unanswered each month, and many more people feeling like they're not getting support. A few of my posts did go unanswered and I felt pretty bad about not having someone to help and to relate to, so I know what that feels like too.

From my perspective, I don't see a problem with this forum though. I have only had a bad encounter with 2 people so far out of 1,000's, who thought my problems were only imagined, more specifically my panic disorder and depression and the amount of pain I suffer (my disability more or less). Other than that things are great and I couldn't ask to be a part of a better family. I visit other forums too, but I got to know alot of people here, so I keep the majority of my conversations here. My health is getting worse now, with different things developing, so I'm prepared to see much less people relating to my posts in the near future. It's the way life is.

Anyways, all I am really trying to say is that I'm a person that would rather have someone to relate to than to have nobody relate to.
Take care,
James.

So.....There's something I need to get over here.

I happen to think it takes alot of gall for you to come on here and accuse a bunch of people you don't even know, that we are somewhere in between "hypochondriacs" or "munchausen".

Growing up with very little compassion in your life is no excuse for you daddio...it's a cop out. Myself, as I am sure, many others here, grew up with ZERO compassion but that certainly didn't make us go around insulting people. I am, as they are now, some of the most compassionate people put on this earth. We are here to support each other and that is what we do because we care....imagine that.

So it seems to you that Hypochondria and Munchausen runs rampid in these halls......
Gee...I wonder if asking what you have been smoking would be as rude and insulting...
I THINK NOT

Sherri

Holy crap, i am reading this and thinking what the hell.???? Most people with AS miss less time from work than able bodied people. In fact, AS people tend to "complain" less than some people with other chronic illnesses. I think I speak for most of us when I say we all have tried to hide it from others....too many questions etc. but make no mistake it is a horrible and painful chronic and degenerative illness, and until I found this site could not find any real medical information about AS.
I too am not interested in sitting in a room with a bunch of pople with the arthritis and just complaining about the pain etc., but this is NOT what this site is!!!!
This site is information and information is power to manage this disease and have a life. If it were not for Ben, Mig and Megan and the information from this site I would not be on Enbrel today, which has greatly improved the quality of my life. This site gave me more information on TNF's etc. then my Rhuematologist could in a few visits.
to even compare this site to those two disorders is not relevant....is comparing apples to oranges. I go on the site bi monthly, or when i have a question, the people on this site are all at different stages of this progressive disease so you will get more accurate information than from a Rhuematologist that is on to the next patient.
So, in closing I suggest you use the site and appreicate it for the world wide information site that it is. I assure you people with AS are not hypochondriacs,(sp) that is a condition of worrying about having an illness of some sort, not actually having one. to cmpare it to manchousions (sp) is also absurd!!!!
Lisa

Thomas,

I used to judge people based on what I knew or suspected, the last 7 years I have learnt about a whole new World, one that for luck I knew nothing about.

I think what you are observing and commenting on, are a number of different behaviours to understand or cope and to help, What for some can be for some a condition which whilst not very pleasant is somewhat uncomplicated and easy to manage for others it is just one of a number of related conditions that can make life very difficult even life threatening.

One great thing about kickas is there are people here with similar experience and often further on in the progression of their disease who can point someone in the right direction. based on experience.

The guys I feel for are those with young families who get hit really hard and then have to cope with kids a mortgage and lots of medical bills. that's when you find out who your real friends are.

Dave