Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I think this needs to be said

I posted this in reply to another string, but I am reposting under a new subject, because I think it deserves to be read by everyone.

I am new to this forum, however I post many more replies trying to help others or give sympathy (we all need it, I don't care what anyone says) than I post of my own problems. Something I have noticed since joining this forum, is that you are correct Ineptwill, that people do not want to hear of others' complaints...this is extremely sad and disappointing, in that the very NAME of this organization stands for Kindness, Information, Compassion and Knowledge. I understand that many have been here for months and even years, and that they know each other and they now have other things to talk about other than their illnesses and complaints...BUT (and it's a BIG one) the very reason that people come here as a new member is usually because they need the SUPPORT, information and a caring ear or shoulder to cry on from others who can relate to their position. It is too bad that it seems more than a few people here have "forgotten where they came from", in that once upon a time they themselves probably started out on this forum with complaints of some sort, and hoping for a bit of sympathy for what is major life stuff. There is nothing wrong with someone wanting sympathy; I even looked up the definition.

sym·pa·thy (smp-th)
n. pl. sym·pa·thies
1.
a. A relationship or an affinity between people or things in which whatever affects one correspondingly affects the other.
b. Mutual understanding or affection arising from this relationship or affinity.
2.
a. The act or power of sharing the feelings of another.
b. A feeling or an expression of pity or sorrow for the distress of another; compassion or commiseration.

We all know that AS is very difficult to live and deal with. I think we need to remember what it was like for us when we were first diagnosed, how we felt when we had our first really bad flare up, and how alone we may have felt before we learned just how impossible it is for others who have not experienced AS, to understand or even help us out.

Another thing I think is important to remember is that before we really "know" each other, it isn't easy to distinguish other people's humor from sarcasm, impatience or even all out cold-heartedness. If we don't know each other, it's hard to tell whether someone is kidding around, or what is their sense of humor.
I have seen others' postings that consist of long, detailed descriptions of their pain and/or bad days...and have been so discouraged to see that there have been (for example) 36 viewing of the post but only 3 replies. Do any of us DESERVE to be ignored, passed over, or judged as "just another one who complains"??? I think not! Every single person here deserves a chance, our attention, and the same treatment that we would hope to get for ourselves.
I will go as far as to say that anyone who discards another's attempt to reach out and be heard or understood, as "just" a cry for attention or sympathy, needs to rethink themselves and put themselves in the other person's shoes even if they have already been there and gotten through it.
Let's try to uphold the very definition of this organization's name!
If all this doesn't apply to you, then please disregard and accept my gratitude for your good and generous heart. If it DOES apply, then please take it how it was intended; to remind us of why we joined in the first place.

We are already heroes; we need not be martyrs too.

Hi,
Nice to meet you AZ. I am sending you a private message, also. There is a lot of love and wise counsel here, and we look forward to sharing the love & counsel you have to give. We wish there was a way to take care of all our family here at Kickas., because each person is important. I have never been a leader here, but I have been deeply loved and forgiven by this family. I love this place!
I regret not helping anyone within my power. But sometimes three posts from people I respect, are all I need to get back in the saddle.
We are glad that you are here.

Right on!!
You really hit the nail on the head. So may posts get lots of replies but some are more or less ignored. When I found out 6 months ago that I had AS, I was scared and not really certain of what to expect. I hope everyone reads your post and is as moved as I am
Thanks

Hi again Jenn,... I've already replied within your other thread so will keep this one short.

I've seen how you have been busy, kindly replying to others so frequently in just the short time you've been here and I bet everyone you've reached out to has appreciated your thoughtful contributions. This is exactly what makes KA hum!!

A little reminder to folks that our newest kickers may naturally have a great need for a warm welcome and extra support is a call out that we can all rise to and get behind! Anyone who is feeling well enough and has the time to spare a few words can mentally make note to add themselves onto the welcoming committee. And scanning the forums to find posts that may have gotten missed is a good way to be sure that we don't leave any kicker without support.

Jenn, please let me know if there is anything more I can help you with.
hugs,
mig

Hello Bill... and Welcome to KA!! I hope you are finding your way around okay and will come to enjoy this place as much as I do.

Hugs!
mig

An emphatic Welcome to you both! I see that yall have met Mig, our Goodwill Ambassador, she's great! There are tons of people just like her here and I'm really shocked that you weren't answered to, that's highly unusual here and I am really sorry that you felt slighted or ignored, I know that we would never want someone to feel that way, especially at our own hand. I can attest that this is not "the norm" here but I'm glad that you brought it up so that it can be put in check before it becomes "the norm". I can only answer for my own negligence in this matter....a couple of weeks ago I decided that I needed a break from worrying about my health problems so I have been steering clear of the main forum and have been hanging around the Asylum, I've only been back the last couple of days and have just gotten caught up on reading the posts that I missed due to my absence. Sometimes I don't post because I may be out of town, or too ill to get out of bed or maybe just spending time with my family or my business, next week I might be out of pocket due to this hurricane. If you stick around you'll see that people drop off and pick back up all the time here but please don't think that it's ever to hurt anyone's feelings. Again....Welcome, I'm sure that you will be a wonderful addition to our community!

hi jenn,

i think these things are good reminders for everyone.

i know when i first got here 8 months ago, i felt a little hurt if i didn't get much response, but i gave it some time. now, some of my posts get lots of responses and some get none....and since its all from me, i'm realizing its the topics.....when i asked about a pain in the butt, i was amazed how many people chimed in and how funny the stories were, i wasn't expecting that. but when i report things that others can't relate to as much, sometimes i get no response, and i've learned that that's ok. i want to report them so that 1) i can get it off my chest and 2) if there is even one other person that it can help, then i've done a service.

i know when i'm here answering everything i can, i'm here about 2-3 hours and it really cuts into the time i should be doing other things. so i think sometimes if people don't reply its because they don't have a lot of time, don't feel they have anything helpful to say, are not feeling well themselves, lots of different things. i used to take it personally, but now i understand better.

but i still think reminders like this now and then are helpful.
and i think you said it well.
reminding others what it feels like to be the new kid on the block.

and when lon said 1 or 2 good responses are all he needs sometimes.
i definitely feel the same way.
but if no one responds, i'm starting to learn that sometimes, people just don't always know what to say....i know sometimes for me, that is true.

sue

Hey Girl,

You sound alot like me feisty and doesnt put up with crap...lol

I posted a similar post maybe 2 years ago basically stating the same thing.

Mig and Sue have said it well they are so genteal (I know thats not right..lol)

We have so many different personalities here and I have clashed with some.

I know for me I am down alot, in the hospital and now homeschooling 1 child so at times I pop in and look thinking that I will come back later and respond and may get to or may not.

You are right now one should ever make fun of anothers pain or circumstances and if you ever feel someone is then just pm Mig or one of the other Admin and they will take care of it.

As you are here longer you will connect with certain people and gain bonds with them.

I have MANY people here that I adore and call my friends and even a few I dont care for and just hit the ignore button if I like.

Im glad that you brought this to attention again, everyone needs a check now and then.

Welcome to Kick AS

Hugs,

Lisa

Hi AZjenn,

Thanks for posting this reminder for all of us to see.

I've always felt bad for the new people who don't get many (or any) responses, so I have been trying to look for those posts first. I try to say something to them to make them feel welcome, if I can't say anything helpful. My time online is limited by both my panic disorder and my wife... She gets a little angry with me being here because she knows I take too long because of cognitive difficulties. Since my time is limited I can't reach out to everyone as much as I would like to. I've often felt bad because of it.

As for myself, once in a while I'll post something that I thought was important and get little to no responses... but I realize that I've always been a different type of sufferer more or less (different treatments, symptoms, secondary conditions etc), and not too many people can relate to my questions. It's not just at kickas.org though in my case. I usually get probably 4 responses per post I make... which isn't a whole lot compared to others. Sometimes I will take it personally, if someone makes light of my serious inquiry or if I don't get any responses, but not enough for me to say anything about it, or actually leave the forum. And yes, I have seen people leave the forum for good.

me personally, I would rather hear about people's AS complaints, because I have a number of AS related problems myself that puzzle me too. even if I'm reading a long list of complaints, it doesn't bother me. However, sometimes I get that strange feeling that not many people want to hear all of my complaints, or successes once in a while.

I keep forgetting to use smilie faces in my posts, because in some of my posts I get a little goofy (that's rare actually), but I try not to do that in newer people's posts because certain words can easily be taken the wrong way.

So with all that said, I agree with what you're saying.
thanks,
James.

Hello Jen,

This is my first time responding and yes, you drew me out of the wood work... I have been reading the daily threads since I was first diagnosed in late spring. My Doctor told me about this site. I was amazed by what I found here - I felt like I fit!
Now I have been going to many medical appointments, working full time, dealing with pain and trying to deal with a very busy family life. Whenever I get two minutes, and can find a computer available, I take a peek and find comfort in what people wright and how most people respond.
This is my first response because it moved me and I felt it needed to be said that I am sorry that a few people do not find the comfort they need. I do believe that the information that is shared here is informative, moving and comforting. I would like to thank all those who have shared and continue to share, but please remember not everyone is as capable of expressing themselves in type, let alone in person, and some of us have just given up talking about our issues because we are sometimes upset with how we might sound to others, even our own families
I must admit that I found the whole process of joining KickAS rather frustraiting, and I finally got my 15 year old daughter to figure it out for me last week. Last night someone wrote something and I did not send the response I had typed because I felt my response might be considered inadequate. Today I asked my daughter to help me find out how to start a thread and we couldn't. She told me she would try again tomorrow.
Jen, I am sorry you felt unsupported but people sometimes need and give support at different times and in different ways.... I am glad you had the courage to speak up and I am honored to hear your story.

Thank You!
Best wishes.
Beth