Chiari Online Support Group

Nobody on here responds maybe im in the wrong group


#1

Why nobody will say anything back is it cause im black i came here for support also maybe i need to find a new place to vent or for help.


#2

Chill with the racist card, not going to get you far.

Holiday seasons and weekends are not so active here. Not such an active site overall, actually. Not tons of Chiari folk around on a per capita basis, with lots of turnover as people move on. Personally, I get a bit tired of responding to newbies first post on their first day here who then never come back. Window shopping. I would recommend reading posts, querying other people’s posts, seeing what you can learn, and get a feel for the vibe. Lurk a bit. Contact someone directly if what they say is resonating with you. What do you want to know about? Run a search on the site. Folks here have gone through everything. They just might not be active on this site anymore. Give and get.

Securing emotional support online is spotty at best. If you are in need of an immediate helping hand, perhaps a local resource would be a better idea.

Chiari is no fun with lots of difficulties in everyday life. Good luck in finding what you need here or elsewhere.


#3

WHOOH, I’m shocked, how and why and from where did the race card show??? White, black, red or yellow or purple for that matter? We, 90% of the time, have no idea what race individuals are nor where people come from so racism is not a factor here. We are a self help platform and playing the race card is not helpful AT ALL for anyone.

I have noticed that with a few of your posts have been follow on’s from other member’s posts and could be seen as comments rather than a direct request for support. We are not being rude in not responding but rather leaving the comment as exactly that, a comment.

You may well find that by starting your own post you may get more response but starting with ‘…is it cause im black…’ is not going to garner much response, that I can assure you. I do notice that one title you have started is in regard to night incontinence and although it is a very valid subject, some people may be embarrassed to broach the subject or it is not something they have had experience with. Personally being male, female incontinence is not something I have any experience with. I have nursed/cared for people who have been incontinent and put things in place to assist for example external male catheters with a condom and adult diapers. I, again personally, would feel less than comfortable making such suggestions to a female, so I may avoid making a comment as to not offend. But again to say it is race related is not appropriate. Sorry.

Merl from the Moderator Support Team


#4

lovebugdavis,

You have apparently missed the fact that bensfriend.org is global in nature. This means there is no consideration given to race, creed, orientation, or really anything past the rare disease issue. Overt hostility and rudeness, including racism, is not tolerated. Nor are attempts sell a cure to community members.

Venting is always allowed. Venting via playing the race card is not.

As gabby mentioned, you’re posting during a two-to-three week holiday period when things tend to be quiet in the community. People are busy with family and friends, something bensfriends encourages greatly. When dealing with chronic issues it always seems to help to focus outward rather than inward.

Also, Chairi is rare condition, there aren’t that many world wide who are symptomatic with it, you may not get immediate response in general as there simply aren’t that many people on the site every day. And, if your issue doesn’t resonate with someone they aren’t going to speak to it.

Playing the race card is never a good idea, particularly in a global and anonymous setting such as this. You have no idea who’s out there reading your posts so you need to not assume the worst of them. Really, playing the race card could easily backfire and make people assume the worst of you. No one wants that. The people here are seeking to help and be helped.

As both Merl and gabby have mentioned, I encourage you to start your own (non-argumentative) topic as well as to search the history of conversations for more information.

azurelle

PS: and if you believe us to be wrong and believe that no one is answering you because of your race I advise you to remove your picture from your profile and post again – make yourself completely anonymous and see what happens


#5

Hi Lovebugdavis

I’m Seenie and I am one of the members of the Moderator Support team. Your groupmate @gabby_jazzypants gave an very good description of the dynamics of the this and other communities, and the effect that the holiday season has on peoples’ participation. (Ben’s Friends has over 40 communities, and all of them “behave” much as she described, especially over the holiday season.) I won’t belabour the points made by my colleagues Merl and Azurelle: what needed to be said, they covered nicely.

Near the top left of your screen, just below the banner, you will see a tab marked “How to Use This Site”. If you click on that you will see several instructional slide shows which might be of interest. One of them is Site Etiquette. Race-related comments are not mentioned, but religion is, and the reason that such comments are inappropriate is, as the page says, because they sow “stress, barriers and division”. Goodness knows the mere suggestion has caused just a bit of stress for some of us who have responded. We are not without a sense of humour though, and it all comes with the territory. (That’s why they pay us the big buck$… oh wait, we are all volunteers here.)

Can we put this question to rest now? If anyone wants to add anything, just email modsupport @ bensfriends.org. Meanwhile, discussion closed.

Seenie from Moderator Support (with TJ, Azurelle, and Merl)


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