Support Forum Is It?

[Ksee]

I first logged on here about a week ago. I was then, and still am looking for a supportive place where people share their experiences and tips for living without gluten. Some people here are supportive but there are also people who attack without provocation. At first, I thought I was misstating or misunderstanding so I apologized for my statements and spent a lot of time clarifying. Then I found I was spending all my time trying to correct misconception and misinformation of even basic knowledge. 

Don't be offended if you are not one of the people I'm speaking of, you know it. I'm referring to the judgmental, easily offended, myopic of opinion, conspiracy theorists, and those who bully others on these boards. I'm referring to presentation of opinion or hearsay as fact. Shouldn't a support forum discourage unsupportive posts, personal attacks. uninformed and uneducated information?

There are reasonable people here who understand what I'm saying and my skin is thick enough not to be concerned by bullies. I started to simply find another forum but there are people here who are being affected, who are new to this disease, new to this forum and people who think what they are reading is correct and appropriate. 

To them I want to say, meanness never has an excuse. There is always a way to say anything nicely. There is never a reason to attack. "Facts" should always be able to be supported by reputable sources and you should ask for those sources. Supportive helps you feel better, not worse.

To those members and moderators with supportive and reasonable outlooks, I would encourage your consideration of my experience as a new member, even though atypical in my willingness to speak up. I have made the assumption this is not an impression the forum wishes to present?

To those who wish to rant, I hope you reconsider. I would prefer my point not be proved.

[IrishHeart]

I've been a member of the forum over 2 years and IMHO, the majority of the regulars are generous, compassionate, and funny people.

 

Like all microcosms of society, the forum has a mixed bag of personalities and often, they may clash.

 

It is unfortunate that in the short time you have been with us, you have a negative opinion of us. Sorry this has happened.

 

BTW, If you feel a member has violated the forum rules in any way, you can report the post.

 

The thing about a forum is...everyone has the right to express an opinion and unless someone is in direct violation of a rule, there is not much that can be done. (you can't "make someone be nice" or send them to bed without dinner. Although that might be fun!   )

 

You asked:

 Shouldn't a support forum discourage unsupportive posts, personal attacks. uninformed and uneducated information?

 

In a word, yes. And we try very hard to do this for the members.

 

Personally, I had to learn to develop a thicker skin, although on occasion, I have my feelings hurt. ah, so be it. I always get over it.

 

The coping section often has discussions and threads that are very helpful. And the dinner chat thread is fun.

 

As for "conspiracy theories"...well, I am not sure what to say except, common sense goes a long way in figuring out what's total malarkey

(and having read some of your posts, I can tell you are not easily duped by such nonsense).

 

I hope you'll stick around!

[Ksee]

I've been a member of the forum over 2 years and IMHO, the majority of the regulars are generous, compassionate, and funny people.

 

I have no doubt you are correct

 

you can't "make someone be nice" or send them to bed without dinner

 

Of course not, but I think we can all encourage positive supportive communication. People entering into that environment, who's negativity is discouraged or ignored, quickly conform or find another outlet for their anger.

 

I hope you'll stick around!

 

Thank you so much

[Brandiwine]

I haven't been a member long, this forum has been a God send to me! Everyone I've encountered so far has been great, I'm sorry your experience has been more negative than positive, hope you do stick around the more perspectives the better

[Ksee]

I'm glad to hear that Brandi Thank you

My experience has not been overwhelmingly negative and my feelings are not hurt. I don't usually care much when that sort of thing is directed at me.

I do care when it's directed at others and my response had more to do with that sort of post. I know I was not specific but I haven't found singling out individuals to be helpful. 

Sorry for the confusion and thank you for the support

[bartfull]

I must have missed the posts you are talking about, but if I said something to offend you, I apologize.

 

I like to keep in mind that when I have been glutened (or corned), I get incredibly grumpy. If someone here is having a grumpy day, I just figure it must be something they ate.

[IrishHeart]

 

 

you can't "make someone be nice" or send them to bed without dinner

 

Of course not, but I think we can all encourage positive supportive communication. People entering into that environment, who's negativity is discouraged or ignored, quickly conform or find another outlet for their anger.

 

 

 

Not being flip here, but good luck with that concept.   It would seem like it would work, but that is not the case.

 

There will always be people who are negative and angry,(on here and in life)  and trust me on this one, no amount of cajoling, or the blowing of eternal sunshine up their skirts will change someone's personality. 

 

People are, well, human ....and they sometimes get mad or angry or frustrated and that's okay as long as the anger is not directed AT someone.

That is not acceptable, IMO.

[IrishHeart]

 If someone here is having a grumpy day, I just figure it must be something they ate.

 or it's Karen 

 

 

 

Ksee, soon, you will see that we like to laugh on here ....a lot .Best form of support there is, in my mind.

[Gemini]

Then I found I was spending all my time trying to correct misconception and misinformation of even basic knowledge.

 

 

I am curious, ksee......what misconceptions and misinformation of basic knowledge were you spending all your time trying to correct?  The only thread I remember where you became very involved was the thyroid thread.  You had some input on that, which was welcome input, but seemed upset that many here do not make use of endocrinologists for their thyroid conditions.  We have some very savvy thyroid people on here, who give excellent information on thyroid disease, so maybe I am incorrect in assuming that was the thread you mean?

 

I'm referring to the judgmental, easily offended, myopic of opinion, conspiracy theorists, and those who bully others on these boards.

 

 

Ummmm......you've been here 1 week and accuse board members of this behavior?  I've been here a long time and there are damn few people on here that one could attach this behavior to.  Really...they are few and very far between.  I think you need to read more posts and get to know people better before making such assumptions.  This is the best forum out there for accurate and knowledgeable informaton on Celiac Disease and all the related conditions that go with it.  I'd even go so far as to say you'll get better and more in depth answers here than you would at any doctors office.  That's why this is such a busy place.  It's the place where you get the real help you'll need to manage and stay gluten-free...happily.

 

[kareng]

 or it's Karen 

 

 

 

 

 

Mom!  Irish is calling me grumpy! 

 

I'm not grumpy...I'm just not eloquent!

[IrishHeart]

Mom!  Irish is calling me grumpy! 

 

I'm not grumpy...I'm just not eloquent!

 

hey, you're the self-proclaimed grumpy-pants, kiddo.

I find you endearing and warm.

[kareng]

hey, you're the self-proclaimed grumpy-pants, kiddo.

I find you endearing and warm.

 

Yeah...but you can't call me that! 

[IrishHeart]

Yeah...but you can't call me that! 

what..."endearing and warm"? oops, too late  I wuvs you

[GFinDC]

hey, you're the self-proclaimed grumpy-pants, kiddo.

I find you endearing and warm.

 

Well, grumpy-pants is better than farty -pants anyway.

 

Ksee, I hope you stick around too.  We need people who are willing to help keep us less than totally corkscewed sometimes.  None of us are perfect, and we all have our bad days and our not-so bad days.  And sometimes it's not easy to avoid spreading that around.  But generally people seem willing to hear advice about their screw-ups and admit mistakes here.

 

And conspiracy theories make great books for a reason.  People really like them!  Sometimes they even have a grain of truth buried in them.  Get it, "grain" of truth?    Oops, bad one, sorry.

[Ksee]

oh gluten-free, you punny person. Thanks

[dilettantesteph]

I have noticed that too.  As someone mentioned, glutening can make you awfully grumpy.  In forums, as in life, there are different folks.  Bullies don't bully when people surround the victim and help out.  It is the responsibility of all of us to try to keep the forum positive.  We all need to step in and and be supportive if we think that someone is being treated poorly.  If 10 people respond with positive replies, that will dilute out that one grumpy reply and make the sting much less.  People who post and believe pseudo science generally don't know any better.  We can help to educate.  You read like you will be a positive addition to the forum and I hope that you will stay around and help make it a good one.   

[julissa]

all I can say is that I have always felt support and welcomed, and this forum saved my life.

[GF Lover]

IMHO, one persons statement of their opinions is another's "snarky" comment.   Our personal perspectives can sometimes skew the intended meaning of comments.  

 

 I am also of the opinion that "self proclaimed" snarckies are a great thing!

 

Let's all remember that we are talking to boxes of text and really have no idea who is at the other keyboard.

 

I'll now slip my soap box back under the chair;)

 

Love You Guys, 

 

Colleen 

[GFinDC]

You are welcome Ksee.  It all too true that writing on the internet can be taken totally the opposite of what's intended sometimes.  Not seeing body language means some things are not interpreted the way we intend.  If you ever want to suggest I change anything I've said and don't want to call it out in the thread, feel free to PM me.  I think that is a fine way to deal with  misunderstandings.  I can always flip a coin and decide if I want to accept your critique after all.  Not!

 

Hi Colleen (GFLover), great to see you around!  I was wondering how things were going for you.  Keeping the doctors on their toes are ya?

 

 

[GF Lover]

GfinDC,  so funny you mentioned Doctors.  We went to the golf coarse this morning.  Hubs and his golfing buddy were golfing while I drove around enjoying the beautiful scenery.  We have new baby goslings on the coarse and they are just fuzzy little things.  I took some pics when the parents weren't hissing at me lol.  Oh, back to my point.  Hubs golfing buddy is also my Cardiologist !!!

 

He and his wife are great to be around.  All the Professionals in our town all belong to the same country club so you get to know everyone on a personal level.  Just remembered I do have a Doctor Appt. Tomorrow.  Thyroid nodules are sticking out my neck now and also putting pressure on my throat.  I say cut the whole damn thing out and be done.  

 

Hope all is well with you too,

 

Colleen 

[GFinDC]

GfinDC,  so funny you mentioned Doctors.  We went to the golf coarse this morning.  Hubs and his golfing buddy were golfing while I drove around enjoying the beautiful scenery.  We have new baby goslings on the coarse and they are just fuzzy little things.  I took some pics when the parents weren't hissing at me lol.  Oh, back to my point.  Hubs golfing buddy is also my Cardiologist !!!

 

He and his wife are great to be around.  All the Professionals in our town all belong to the same country club so you get to know everyone on a personal level.  Just remembered I do have a Doctor Appt. Tomorrow.  Thyroid nodules are sticking out my neck now and also putting pressure on my throat.  I say cut the whole damn thing out and be done.  

 

Hope all is well with you too,

 

Colleen 

 

Oh boy, geese can get quite a hissy-fit going!  Good thing you were carting, cause them birds like to run up and peck people sometimes.  At least the ones we had on the farm as a kid did.  I think they like the taste of people!

 

Ah yes, thyroids can be fun eh?  I have a cyst on the front of my throat from my thyroid.  Being a man I can cheat a little and grow a long gray/white beard to kind of hide it.  So I did!  Mine isn't quite putting out the juice like it used to tho, so I take Natural Sources raw thyroid pills.  I ran out about a month ago and got to feeling pretty crappy.  Finally got started on some pills again last week and it made a big difference.  No more sore joints, not sleeping 12 hours day, neck not creaking and clicking anymore.  Digestion is moving faster too.  And I actually have some energy.  My cyst is in a location where the doc said he would have to remove the whole thyroid, not just half of it like they can do sometimes.  But so far I am getting along ok with it.  I gotta go back and get checked for my nodules soon tho, in case they have decided to get larger.  Most of the time nodules are not a problem (benign) and most people have them at some point in life.

 

That's great the doctors like to play golf.  Keeps them off their boats I guess.

[Celiac Mindwarp]

I hate it when people are mean and make assumptions.

But the support I have had here and on another site of a man known for the odd rant, have given me back my life. I will always be grateful to the folks who give so much of their time and knowledge here.

When I started here I remember thinking some people were a bit hard on people who hadn't found their way through the diet. I ended up having to make radical changes to my diet, and I now have a very clean diet, and have my life back. So I understand. I am glad I read their posts. Not everyone will need it, but for anyone not getting rid of symptoms, it could be a lifesaver.

I am not excusing some of the awful rudeness of the last few days. At all.

I hope you find ways to benefit you health, or that of your loved ones. It is what the vast majority of us are here for.

[GF Lover]

Oh boy, geese can get quite a hissy-fit going!  Good thing you were carting, cause them birds like to run up and peck people sometimes.  At least the ones we had on the farm as a kid did.  I think they like the taste of people!

 

Ah yes, thyroids can be fun eh?  I have a cyst on the front of my throat from my thyroid.  Being a man I can cheat a little and grow a long gray/white beard to kind of hide it.  So I did!  Mine isn't quite putting out the juice like it used to tho, so I take Natural Sources raw thyroid pills.  I ran out about a month ago and got to feeling pretty crappy.  Finally got started on some pills again last week and it made a big difference.  No more sore joints, not sleeping 12 hours day, neck not creaking and clicking anymore.  Digestion is moving faster too.  And I actually have some energy.  My cyst is in a location where the doc said he would have to remove the whole thyroid, not just half of it like they can do sometimes.  But so far I am getting along ok with it.  I gotta go back and get checked for my nodules soon tho, in case they have decided to get larger.  Most of the time nodules are not a problem (benign) and most people have them at some point in life.

 

That's great the doctors like to play golf.  Keeps them off their boats I guess.

Same thing here.  They found it before cancer diagnosis.  Since I went through the immunotherapy my numbers have been all over and now aside from the original (calcified) nodule, I've developed two new ones, not calcified.  It's been hard trying to get my immune system to stop attacking me.  Hopefully getting the thyroid under control again will do the trick.  Glad your thyroid is doing better.  They really can throw you out of whack.  Our geese here are a bit kinder, they only start hissing at around 10 feet.  They are pretty used to alot of people around, thankfully.

 

Moderators: please forgive me for hijacking the thread.  I meant no harm

[IrishHeart]

.

 

Moderators: please forgive me for hijacking the thread.  I meant no harm

 

No worries,  Colleen---I would not call it a highjack at all! 

 Instead, I think it is a perfect example of how we gab with each other

often about our various health issues, our day- to -day activities and the occasional geese encounters, too.

The golf community I told you about (that we are moving to) has these elegant sand cranes with fuzzy little babes and I am excited to meet them. 

[Loey]

I'm so sorry you had a bad experience. This forum has literally been like life support for me.

When I first joined I was just diagnosed and moved to a new state. I was overwhelmed, overmedicated,scared and wrote some pretty whacky posts. I don't think they offended anyone (at least I hope they didn't). I was always treated with love, support, encouragement, wisdom, and a lot of laughter. I hope you'll stick around long enough to see how very much the people here care.

Please feel free to PM me if you need to vent. And a belated welcome.

Loey