Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Where Is The Love???

Dear Lisa,

I always felt i should have contributed more to this great group of people with whom i share something common. I am not the kind who always has good company at all times. I am loner of sorts. If having to deal with stiffness means i can relate to such good people like you, then i think its not such a bad bargain afterall, personally.

Please feel it, when i say i really love you and wish i could have been there near you and given you the biggest hug!!

Keep looking up your favourie website as you will be poured with love. And please don't cease to post us with your loving thoughts.

I LOVE YOU.....

Wow have you got problems, I have been on this site since 1999 and I am still shown as a new member, I have been dropped off twice when they have their annual need a larger computer time and have had to change my name from Rat to Penguin because know one would reply to my emails about not being able to get on, after my first time as Penguin replying to a post i get a pm from one of the post police saying that I should introduce myself before getting into too many posts.
I do not post much now but come to this site to see if any of the oldies post. But there is definitely a clicky group who seem bent on replying to only certain members, and not much practical advice for those who are crying out for information, especially those who are new to this bloody horrible disease or new to this site. I do not ever want sympathy, this only brings on the why me depression, I only want grass roots information from fellow suffers and also share the information I have collected over the years to help others move forward.
Penguin (Phil)

Hi
I have to admit i have noticed the exact thing u r talking about myself. I dont wish to offend or upset anyone by sayin it. At first i thought i was bein paranoid. I have noticed there are certian posts get very many replies and others hardly any. There are many veiwing the posts but not replying. I know its impossible to reply all of the time, especially with the pains and stresses of AS and family life. I try and reply as much as i can.
I too agree there seems to be a clicky group, but i usually try and ignore all this as i can be quite thick skinned, but cant help gettin a little disappointed when so many have viewed and so few have replied, there may b some that like i do have no knowledge on that particular subject and dont know what to post sometimes dont post
i understand that.
to u, hope u feel better soon
best wishes
heather

hi angelmom, every day is anew day and i hope when you read this you feel ten thousand times better [cant get exclamatioin marks on this dam computer ...so there is one back there] I,D Like to hope and think that when my daughter and son grow up they have the balls to face situations and confront people with honesty and integrity and let ther feelings be known.In aussie ,when you fart everYone says BETTER OUT THAN IN. so go girl[exclamation].I LIKE YOUR HONESTY .. ,JUDE2

I think I can understand why some folks might feel that certain cliques exist here at KA, but I guess I feel like I disagree that this site is particularly cliquish. I have belonged to many, many online forums and support sites through the year for any number of subjects, and I have always felt that KA has been one of the least "cliquish" of those many sites.

I think that's because what some see as cliques I see more as friendships that have formed through the years, either between members who joined KA around the same time, or between members who have shown a common interest in certain subjects--both KA and non-KA related. Once these friendships come into being, they tend to remain in place, and what tends to happen is that when a person comes to KA, they tend to first look for post made by his/her group of friends. When they find those posts, they are the ones that are answered first, and there are likely PMs waiting in addition to forum posts. Once people answer the posts and mail from the folks they've known for a while, there is a good chance that they've run out of time and can't answer other posts, or perhaps their pain levels have shot up and they've reached their endurance limit.

I know some folks are probably saying, "OK, Brad, I get that, but how in the heck does what you just described differ from a clique? Sounds like a textbook definition to me?" Yep, it could sound that way. The reason I feel this is very different is because to me (and I think the definition of the word might back this up, although not positive on that), "clique" is a pejorative term that has a lot of negative weight behind it. To me, a clique deliberately tries to exclude others and intentionally ignores anyone who is not in the clique. It is the fact that I assign that meaning to the c word that I differentiate between cliques and long-standing friendships. Unfortunately, no matter what meaning is used, the end-result can, and has been, the exact same--some folks getting no responses to their posts, and when that happens, it is very easy to feel left out, and no one likes that.

So, with this tomato/tahmato situation going on here, how does someone overcome that? I'm afraid I don't have any profound answers for that. I am very, very sorry Angelmom (and others), that you sometimes feel left out here at KA or that you are being ignored. I think you've taken the first step in trying to feel more included by expressing your feelings here, and that's great. I hope no members view this as some klnd of attack on them or anything like that, because you're just expressing your very strongly held opinion about a situation that has been hurtful to you. Whenever that happens, our response as a group should be to take a look at the issue or criticism that has been raised and then think of ways to make the situation better. At the same time, I would hope that anyone who raises an issue that has been troublesome would also actively contribute to any dialog that arose to try to fix the issue. Luckily, I know that is almost always the case, including this time!

Angelmom and others, I don't know that I personally have a ton of solutions here, but I'll throw out what I can. One thing is to please try not to take the situation personally, as hard as that is. I know that it REALLY becomes hard not to take things to heart when you are feeling depressed or in intense pain, but I do believe that no one is acting with malice when they don't answer a post. If you make a post and no one answers and you really need some answers, try to bite the bullet and put up a new post on the exact same topic, creating a new subject line, something like "Repost--really, really need help here gang" or "Really need answers this time--not doing well." Something that makes it clear that you've already posted on this topic and that, like Glenn Close, you "WILL NOT BE IGNORED!!!!" (Please, please take that route instead of boiling anyone's rabbit in a pot, ok? LOL) In other words, basically take the high road say you know everyone is busy but that you really need some advice or support; don't let folks off too easy, however--be sure to add a line that makes it clear you wish you had received answers the first time and you're bummed about having to repost.

I think the result of taking this approach is that folks will recognize that they ignored a member's cry for help and that they better not do that again, which means you will finally get the support you were seeking. Sure it can be an ego blow to have to put that second post up, but only if you let it be--just try to focus on the idea that folks were busy and/or missed your post the first time, and try to remain positive because the outcome should be that you do get the all-important help you were seeking. Once that happens and you get those answers, hopefully the next time you post seeking support you won't have to make a second post because, ideally, people will remember that you were ignored once before and will rush to help the next time. Also, all the folks who responded to your repost might file you under that "friend" category now that they've talked to you and found out how gosh darn nice you are. And hey, if my premise here holds any water at all, once you're in that friend category, more posts will naturally flow your way, you'll then keep making more friends, and so on, and so on, in a great big circle of life.

Quickly now, since this one tops even MY usual novels, other things I think of off the top of my head include trying to form your own naturally formed group of friends by PMing other members who you saw join about the same time you did. Introduce yourself and mention how intimidating this place can seem sometimes when you're new or an infrequent poster and then just let the person know that you were just saying high because you know they joined about the same time you did and you were curious if anyone else felt that way. There are many other things you can say, of course, but don't be afraid to PM someone out of the blue--most folks love finding that little letter blinking when they log in. And if you don't want to single anyone out just because they joined when you did, then pick out a few people whose posts you have enjoyed reading and send THOSE people a PM out of the blue to introduce yourself. You can say that you've admired/learned from their posts, or break the ice in any way you see fit. The key is just to be proactive about opening as many lines of communication as you can. Another approach to to post early and often yourself. This can be a ton of work, however, and why should we assume that you have any more time or energy to make a bunch of posts than do the people who ignored your first post? Just a thought is all it is, even though it might be flawed.

Is it fair that all of my suggestions above put the burden on you to put yourself out there more initially in order to try to ensure most helping hand posts when it's your turn to ask for help? Nope, it sure isn't, but this might just be a case where. if you have found one or two of your posts going unanswered, you simply might have no choice than to take the bull by the horns and go on the offensive. If you are simply too depressed to do that, or in too huge of a flare, then maybe just try PMing an admin and explain to him/her that you really need help and that your groupwide plea for help was ignored. I am quite certain that any admin would be glad to help you out by either providing their own answer/opinion about your situation or maybe even by putting up a post of their own that explains your problem and asks the group to come to your rescue because they didn't the first time.

Bottom line here, I hate to hear that any member of KA ever feels like they are being ignored or that they can't jump in as much as they would like to because there appear to be intimidating cliques here. No one should have to feel that way, and all of in KA need to do a better job of preventing anyone from feeling that way again. We should all say to ourselves that if we see a post that has received no responses after a few hours or a day (depending on the seriousness, or time-sensitivity, of the post), then we should each take it upon ourselved to take the time to provide an answer, to get the ball rolling. If we do this, than the power intrinsic to a group like this really comes into play, and no one has to feel left out again. As you say Angelmom, we've got more than 4000 dang people in here now, so there is NO reason for anyone's post to ever go totally unanswered! Let's see some of you lurkers come out of the woodwork this way, and at the same time, let's see all our prolific posters jump on to the bandwagon too. To paraphrase George W. (and many of you know how much that pains me!), let's all work together to make sure that "THERE IS NO POSTER LEFT BEHIND!"

That's all folks! Angelmom, I hope you feel better. Heather, I hope there are some ideas in here you like. I promist that I will do my part to answer any unanswered posts and will be more cognizant of people's feelings. I hope that out of this topic, we come up with some new ways of doing things here that will benefit any KA member.

Oh, and I also welcome any responses telling me I'm nuts that that I really wasted my time by going into such depth on this one! Either way, I said my piece. And finally, in closing, I apologize in advance for any typos in this post, as it is just about 6 am eastern time as I come to a finish here, and I was barely staying awake as I tried to finish this! Good night all!

Brad

Hi
I am afraid i am having a blonde moment regarding the clique definition, i' not very clear on it!
Like i stay i am quite thick skinned and have tried not to take it personally. This is y i havent mentioned anything before now, just put it down to "one of those things" And i very much understand there are lots of reasons why everyone cant post all the time, i mean we r all only human at the end of the day! I beleive one of the main points here is that, something is posted (i have noticed it happen to others too) the post gets a lot of viewers, (not disputing the fact that its not gettin viewed cus they very much are) there is just a lack of replies at times.
I have even taken to replying to my own posts as much as possible for the following reasons:- a) i very much appreciate and very thankful to anyone who replies and b) it also keeps the post from getting further lost and slipping onto the next pages, which in all fairness, once u get past page one, u've probably had enough of sitting at the computer and have other things to do!
I was under the impression that when someone new joins we are welcoming a new friends to our existing database of friends. I count everyone on here as a friend.
Another thing i have done in the past is replied to a post even tho i can b of no help whatsoever, soley because there has been many views and no replies.
My attitude towards this has been if people want to reply they will, if they dont they wont.
Oh i will tell u something that happened to me recently proves proves we will post when we can. I saw the sciatica post didnt get chance to reply cus a friend came round, when i went back to my computer later on (i blame it on the meds and not bein able see straight lol) i could not see for looking the post on sciatica. It took me 3 days to find it! I was at the point of making a post myself saying "having blonde moment lost sciatica post, can anyone help!"
I really dont think this issue has arisen deliberately at all, i think its somethat til now many had no idea it was happening.
take care
heather

Personally, I have found more love, support and INFORMATION than I could ever hope for merely by reading OTHER peoples posts and also by SEARCHING past posts for supportive information presented in a loving way. I know that this is not the same as receiving timely personal feedback, something I may not need as much as others, just want to offer my perspective...

--zdog

Hi Heather,

You pointed out a definite flaw in my 4-billion word post, and I'm very glad you noticed. You were exactly right when you said that "when someone new joins we are welcoming a new friends to our existing database of friends. I count everyone on here as a friend." Reading your words made me realize that I made it sound like the folks who have been here for a long time consider only other "old-timers" to be their friends and that they only take the time to post to those friends, which was one explanation for why those seemingly prolific posters only seemed to post to a few people, thus forming a clique that didn't seem to want new members.

That is definitely NOT what what I meant, and I agree with you completely that I count every member of KA--new or old--as a friend and a brother- or sister-in-arms in this battle against AS. However, while everyone here is thought of as a friend, I still have some long-time members with whom I have been friends for up to five years. I have gotten to know some of these folks very well through this online forum, even meeting some in real life, so it is only natural for me to search those folks out first when I login. If I find a post or posts from that group of friends, I will usually answer each one, and quite often that will be all the time I have to spend here. I certainly read the subject line of every post to see if there are any emergency posts, but if there isn't one, and I am out of time, all those posts from people I don't know as well (or at all) will go unanswered. I hate that it plays out like that so often because I know new folks need information and want to feel validated (or loved, as Angelmom said) by having people answer their posts. However, with my time here often limited--either by work or home schedules or by severe flares that hurt my concentration and ability to key a lot--I just don't always have the time or gumption to answer those posts from folks I don't know.

So, that's what I was trying to make clear, and I definitely did not. I hope that helps cut through the fog a little bit. If not, feel free to post in this thread again or simply drop me a PM and I'd be happy to chat with you further.

There's a line from an old song by Big Audio Dynamite (and yes, I know calling a BAD song 'old' is definitely an oxymoron!) that applies perfectly here: "A stranger's a friend you just haven't met." An idea we should all try to remember here at KA.

Brad

Great point zdog, as it's easy to forget just how much amazing information has passed across the screen through the years here at KA. I think some new folks don't even know that we have a search capability that works quite well, as I think it's a beneficial tool that every new KAer should consider playing around with when they join. You never know what you might find!

Don't get me wrong folks--I'm definitely not saying that new members shouldn't just dive right in and post immediately, but just echoing zdog's point about how much a person can gain just by reading past threads.

Brad

Okay you....

I am very guilty of what you are saying, and I am very sorry.

I honestly dont feel that I can give to KA as much as I used to.

I do pop in just about daily, and the ones that I think I can help, I do respond to them, but they are few and far between.

I apologize for not being here for you. You are a sweetheart in every sense of the word, and I think a lot of us needed the kick in the pants you just gave us.

Life threw some crappy stuff at me not too long ago, and I didnt really think I could do much for anyone. I am back, and better than ever.....I will put more effort into things.

Lisa, you are one of the special ones, an angel sent straight from heaven. You have been there for me in the past, and I am so very sorry that I was not there for you.

I will PM you my numbers, so that you can contact me when ever you need to.

Thanks for the kick, and I will try to do better.....dont be afraid to give me another boot if needed.

Love ya
Lori