Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I was a bit upset earlyer

Bravo, Kevin! Just to echo all of the other moderators and admins who've already replied, you absolutely were not out of line with this post. In fact, you were about as "in line" as you could possibly be.

Well said, and thanks for speaking out.

Brad

Thanks Dow

Wow didn't see that coming

Why is it the smaller the picture the better looking I become?

I'm the same way! The further somebody stands away from me, the better I look!

But in your case, not true. Even if I didn't photoshop any horns on you as requested, you are already a handsome devil

Thank you for proving that KAers are nothing if not silly!

I do feel the need to say that I feel very badly for the person who came here for support, only to find the opposite. While KA may have begun as a place to discuss treatment options not offerred in the mainstream, it has evolved over the years into something much more. We are a true support group, in every way.

When one of our members thinks he or she has the right to belittle someone for how they choose to treat his or her AS; when one of our members thinks it's OK to use insulting language against people who don't choose to follow the same treatment path; that is not support. We have lost longtime members directly due to this, and now, we have lost a new member, too.

By all means, debate, discuss, rehash old arguments, but remember that we are here to support. If the person/people you are debating with doesn't agree, insults won't change their minds. Proselytizing (for that is what it is) and demeaning language won't change their minds. Nobody's asking for La-La or Po here (frankly, I'd run as fast as I could in the opposite direction), but for the respect due to one another as human beings. Respect for our right to disagree and make our own choices in determining how best to treat our individual case of AS. State your case, give your reasons for believing that, but don't resort to abusive language just because someone doesn't agree. That's for schoolyard bullies, not for thinking, reasoning adults who understand the need for compassion and support as people grapple with their options.

Warm hugs,

Hello Kevin

I too was very moved by the post where a new member had walked in the door only to feel it was slammed in their face.

You have said something really important on this post, Kevin and it certainly made me think about my own personal conduct.
I like to be a bit silly and joke around - but on more than one occassion, although unintentionally , I have made comments which could have upset or offended certain members. I am deeply sorry about this as I am a very supportive and loyal person usually, and would be mortified to think I had hurt someone in any way.

I will certainly be thinking more in future about Support being of paramount importance on this site above all else.
People can be in serious pain, on powerful medication, hanging on by a thread, overwhelmed with depression and countless other things.

It's great to laugh and joke, it's great to debate. But it should always be with support in mind. You can't go wrong if you speak from your heart - it's your head that sometimes gets things wrong.

If we all look out for someone, we will all have someone looking out for us too and hopefully no-one should feel they are alone.

Take care, Kevin, I think what you have said needed saying big time.

John

With respect, I couldn't agree less with most of what you said.

My heart sank when I saw you had commented on this post of Kevin's because I thought you might say something negative and you have. It's a shame because it kind of illustrates the point.

I think if one person in need gets scared away from the "#1 AS Web Support Group" it is a traversty. Members are people not numbers and each and every person is important. It is not good enough to tell them to look elsewhere - we should constantly be reviewing our behaviour and conduct to ensure that they are good at heart.

I don't think that most people get upset about a heated debate, as such, I think people get upset when other members directly insult, patronize and undermine other members - but I may be wrong.

If one wants to spar with someone, or take a very strong view (which in your heart you know might be provocative and aggressive) one should save that for outside the main forum - in my opinion.

For example if you take strong issue with what someone says, perhaps a private message could deal with the matter without everyone having to witness it - or it having a poisioning effect on a post - perhaps killing it stone dead.

There is only too much "ever-so-cute and agreeable" ness if it is not genuine. If you are speaking from the heart it is the difference between caring and patronising.

As far as the doctors thing goes - I think that if you are speaking from personal experience about a doctor letting you down, then fine. But when the majority (I believe) of the KickAS population rely on doctors and medication to get out of bed in the morning it should be rememembered that it is as inflammatory and insutling to dis the medical profession as it is for someone to dis the NSD or LSD or anything else that is your treatment choice.

It is one thing to inadvertantly upset someone, but quite another to go hell for leather about something and in doing so alienate and insult people. One can get a point across and at the same time remain civil and courteous to others.

There is no right and wrong - it's all about respecting other peoples views and ideas, but also about respecting the fact that we all are (or have a relative or friend) suffering from a chronic, painful, degenerative disease. Love and support come before anything else, in my view.

Please feel free to PM me about this, John. I would have preferred to PM what I have just said to you. I feel uncomfortable about saying my piece publicly and do not want to damage Kevin's kind and supportive post, but I don't know how else I can talk to you.

I am not always great at expressing myself and if you would like me to clarify anything I have said, or if indeed, I have offended you in any way - please PM me and I will talk to you about it.

Respectfully (I hope),
Tink

Hey, Tink:

You have just illustrated my point; I'm happy You don't agree with me and Your attitude is what makes KickAS the best place on Earth for support.

Some people will not get one kind of support from me, because they are expecting something that I am not, but they might get that support from You, instead, and I appreciate You for it.

I absolutely never try to resolve actual issues via PM; it is not fair to others who learn from the discourse. Our ideas are out in the open, and we not only post replies to one person, but to people who are not even members, but are sometimes looking on. I have received many emails from people who contacted me after various debates and these often do not even want to become members, but just want more information, or eventually join to keep themselves updated but might never post. They are shy or they just don't want to start anything as often said.

KickAS can benefit members as well as non-members just doing some research. The sometimes polite exchanges or sometimes actually supportive posts are a luxury, thanks to the awesome members--individuals--who care enough to respond.

We each know what having AS is like and what being alone with this disease means. There was no internet when I had active disease, it was just me, alone with my AS and perhaps there is something useful there: Once we are alone, and the din of others dies down, we realize it is just ourselves against this monster and we fight the best way we can. Perhaps something good will come of this, too. AS can teach important lessons, and I am certain there is a reason I had AS.

I don't know whether You read of my experiences with doctors, but it is not just my own orientation that they should--and shall eventually--do better for those of us with AS. I fully expect that those who now so ardently support their physicians might in that future time not like so much of what a doctor with a successful treatment for AS might say to them.

Thank You, for being YOU,
John

Hey John

Sorry it's taken me a long time to reply, I do not know anything about your experience with doctors and really wanted to look into this beforehand. I had a little look through your previous posts, but there are so many and I could not find anything. Maybe you could point me in the right direction. I conceed that I do not know much about you at all, I would be very interested to know anything you would like to tell me.

I understand the sentiment behind what you have said in your reply and you make a good point, John. Diversity is one of the key elements of the success of this site.

I also appreciate your view about resolving issues.

I know there is a lot of point illustrating going on here - LOL - but I think that just proves that we can agree to disagree - and I love that we have had a chat like this in such an amicable way. I respect the way you have not pulled apart my comments but just added your own - that was part of my point I suppose.

I admire your dedication to this site, your knowledge about AS and your conviction to stand up for what you think is right.

I stand by my previous comments, as I am sure you would expect me too. Agreeing to disagree on some points is a good way to end our discussion.

I am sure we will agree and disagree much more in the future!

Take care,
Tink

if you are going to dish it out, be prepared to eat it also.

Darryn, he wasn't dishing out anything but merely asked us if we'd be a bit more mindful of our words and consider their impact on new members.