Goodbye Thread

[ekrueger]

this whole thing is really sad. this is exactly what is wrong with America. We're so afraid to talk about God but yet we can say expletives and watch junk like reality t.v. and let our kids play video games where they pretend to blow bodies up and kill animated characters. sad. maybe if more people talked about good things such as God, the world would be in a much better state of affairs.

liz

[Davit]

I will second that for sure.

[Cheryl F]

Susan and All:

I am going to make one more attempt to be clear on what the issue was in this situation. 

The concern expressed in the RBFV message to Susan was about the use of the highly directive and prescriptive terms “You must believe that God…” and ?Believe you can heal and you will heal?.  

It had nothing to do with the fact that ?God? was mentioned, but the prescription for healing that Susan?s post conveyed. Susan ? and any Member ? is welcome to mention their faith.  

The RBFV Private Message to Susan was a private message to a valued Member which simply conveyed that prescribing, in any form, is a breach of forum guidelines and that religious directives may offend some members.  

It could have easily been resolved with a self-edit of the post to soften the directive language by personalising it. Something like: It is my belief that?.  

Susan, it is not our intent to “muzzle” you from speaking of your experiences or of your faith.  We are asking simply that you refrain from using directive and prescriptive language. That is the issue.  If you choose to leave the forum, do so because you stand behind your conviction to use directive statements such as “you must” and not because you believe that we are asking you to refrain from speaking about “God”, because that is not the case. Hundreds of posts on this forum speak on the topic of “God” or spiritual healing. We have not and will not seek to limit these discussions.  What we do[/b] limit and will continue to limit are all types of directive and prescriptive statements on any topic, including those of a religious nature.

We have sent similar messages in the past to forum members who have used directive statements related to the use of supplements, specific protocols and other healing measures.  As with this situation, it is not the topic that is of concern, it is the directive nature of the statements which have the potential to upset other members, or to be seen as prescribing, potentially putting the Foundation at risk.    

The Forum is a form of communication that has limitations and we all have to accommodate those limitations in every post that we write or read. Sometimes those limitations are inadvertently not accommodated, which is when the need for moderating arises. Our obligation as moderators is to attempt to moderate this forum consistently.

Finally, I would like to state that this thread is not supportive of the mission of the Road Back Foundation or the purpose of the Road Back Foundation Discussion Forum. I believe it is distracting and may be discouraging to newcomers to the forum who are in need of support.  Therefore, this thread will be closed on Wednesday, February 24, 2010.  This gives those who wish to reply the opportunity to do so, while limiting the time that this topic is allowed to remain prominent.

 
Cheryl Ferguson, President

Road Back Foundation

[Davit]

Yes for sure

Davit

[linda]

I appreciate the extra post to clarify the situation, Cheryl. It was helpful to me to know that it was not the spiritual belief that was the problem but instead it was the directive used, and that anything a member posts using similar language would get the same response from the board.

I do understand why we have to be careful in choosing our words. When I was first diagnosed and in a very severe flare I was sent to a rheumy in the military hospital, my husband was in the Army, so I had no choice on which doctor I could use. The doctor was very well informed and was patient, but he let me know every time I saw him that he was very religious and that he knew that faith played a huge part of healing. He was even doing research into faith and it's effect on healing and his patients were required to fill out a survey with very personal questions on their home life. He made me feel like I was not getting better b/c I didn't have enough faith. I was offended on so many levels.

There are 2 dangers that are inherent in a directive statement. The first is that someone with a different religious background may be offended. The second is that there may be somebody who believes what you say but doesn't get the promised result no matter how hard they try. I was very active in my church for over 20 yrs, and one of the reasons I quit attending was b/c I kept hearing the same things; faith will heal, put your health in God's hands, etc. It all sounds wonderful, and I wore out my carpet praying for help, but I just kept getting worse. The result is that I now struggle with my faith; the fact is that sometimes the most faithful person in the world will not be healed. I want to heal, I've tried everything spiritual and physical and emotional, but I just keep losing ground. The consequence of a directive statement for someone who is not getting well is that their continued illness begins to feel like a personal failure, or their faith isn't strong enough or they don't want it bad enough. Basically, they feel that they don't deserve to get well.

I have nothing but respect for you Susan and as I said before, your faith is inspiring to me. I may be way off in what I think the board is trying to prevent by not allowing directive statements, but I think it has to do with what I mentioned above. I know that neither you or anyone else here would ever want to make anyone feel that way about themselves. Don't worry about me, I have thick skin, but there are many people who come to this site that we don't know b/c they don't take part in the discussions.

If I'm way off base then I would ask the board to delete this b/c I don't want to muddy the waters or create new lines of discussion; I agree we need to put this puppy to bed.

[spacehoppa]

I agree very much with what both Cheryl and Linda just said. Adhering to these guidelines is what makes the RBF such a safe and comforting place to be. I know that I am glad to be bound by the guidelines, having transgressed them once before myself (sorry!).

I think this has been a really interesting discussion and has brought out the heart of the matter, which is that no-one can (or should try to) tell someone else what will make them well, whether that be a belief or a course of action. After so many false dawns, treatment wise, I am coming to realise the sincere truth of this. We all have to find our own way there. But with eachother's support, the journey is easier.

I'm still sincerely hoping that Susan will stay!

[Susan LymeRA]

Cheryl,

Thank you so much for your clarification that it was not my faith but the way I stated it that was offensive.  I truly did not understand the intent properly and now I do.

I am so guilty of making emphatic statements. 

I never ever meant to say the person had to believe in God and I really must be more careful how I word it.  My intent was to counteract the horrible impact rheumatologists have when they rob you of all hope by stating your illness is incurable and your only hope is to possibly slow it down.  Truthfully, I was trying to say the body can heal and will heal if only you will believe it can heal.  Not that sitting around saying “I believe, I believe” will heal you, but that you will not seek healing if you do not believe healing is possible.  I meant it to be a voice of hope.

Again, I love this community and the loss was truly going to be mine if I had to leave it.  I just felt it was a sacrifice I had to bear for my faith. 

How happy I am to realize that is not the case.

My apologies for the misstatement and the misunderstanding.  I am jumping with joy to still be a part of this wonderful group!

:roll-laugh:

I love you all!!!!!

Susan

 

[Kim]

Well, Susan, you just managed to impress me even more! :blush:

I'm so happy you've decided to stick around and look forward to many more of your informative posts.

Hugs…..kim

[Lynne G.SD]

Hey Suzie Q. I am so glad you are staying.I have been reading this thread with great sadness as I remember when something got blown out of all proportion back aroung 1999 or 2000.Some wonderful people left and I never heard from them again.Maybe someday you will hear about that kerfuffle and I never want to see anything like that happen again.
                  Love you kid.   XXXX,Lynne

[bonnielou]

Well this is a very nice start to a Monday morning — and a reminder of why this organization is such a wonderful source of information and inspiration. Hope does matter. Appreciation to everyone who worked to improve communications and heal feelings on this very sensitive topic — the volunteers, Susan, and other concerned commentators.

Bonnie

Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

[mkbeeliever]

[user=86]Susan Lyme/RA[/user] wrote:

My apologies for the misstatement and the misunderstanding.  I am jumping with joy to still be a part of this wonderful group!

:roll-laugh:

I love you all!!!!!

Susan

This is awesome!  This has bothered me alllllll weekend long.  I am so happy about this! Virtual group hug everyone, group hug!  :roll-laugh:
And yes, the sooner this thread can be put in the rubbish, the better! 

Blessings to all,
Michelle

[Davit]

Oh. Linda.
I think If you quit worrying about getting healed and just concentrate on doing your best then he will heal you. You can not have two Gods. I don't care if I ever get better because I know I will. That does not mean I won't do every thing possible to cure this and after all that if it doesn't work then it wasn't supposed to. I can but ask for help and see what I get. This is just how I think and in no way is it a directive, but you might want to think on it.

There is a lot of truth to the saying be careful what you ask for.

Davit.

[linda]

Susan and everyone,

I have to say that I am very proud to be a part of this group. We are awesome, IMHO! What's that saying, the sum of the parts is greater than the whole, something like that. Anyway, I've learned from this thread; Susan is the one who unknowingly goofed in the way she phrased her thoughts, but I'm sure I would've or already have made the same mistake, and not just here, but in all of my interactions with people.  Now I too will be more careful of how I speak. What had the potential to be a disastrous thread has ended up being a very positive experience, I think.

So glad you're staying, Susan. Super strong bear hugs for everyone!

[maz.aust]

Hi Susan & everyone else,

I came in today & started reading what clearly happened when 'political correctness & keeping middle ground' went awry.  If I could make a small suggestion it would be that sometimes it is better not to get bogged down in atttempting to explain the 'protocols' but to simply apply the KISS principal.  Perhaps in future a simple PM with a suggestion of alternative wording would do the trick & keep the lines of PM communication open between the RBF Moderator & Member involved.  I have no doubt that the Moderator was attempting to do the right thing by everyone without realising at the time what could happen if the written word in the PM was misconstrued.

I am so pleased all worked out in the end & that Susan you will be staying.  The message of support is clear .. you are a valued & respected Member of RBF .. welcome back.

Maz – Aust
ps – Many years ago at an AA meeting (I was an invited visitor at the time as I was counselling the families of alcoholics) — anyway, at this meeting I met a man who had been sober for 14 yrs, during conversation the subject of a higher power came up & I can remember asking him about his 'higher power' & he said “my God is 'the tram' because it takes me to & from these meetings, if it wasn't for 'the tram' I would be dead by now”. 

Doesn't that speak volumes !!  each to their own & who are we to judge…..

 

 

 

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Author]

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