taboo words ...

Discussion in 'Fibromyalgia Main Forum' started by lascot, Sep 28, 2006.

  1. lascot

    lascot New Member

    dear fellow sufferers,

    thank you so much for your responses this morning to my cry for help. it was so helpful and uplifting to just know i was heard ... but when the issue of my mentioning a taboo word according to the board, all emails stopped!!!!

    i admit, when i first saw this little suggestion to censure my wording, i could hardly believe it. so i went and read the rules for this board...

    please tell me how to explain myself around this subject and depression and NOT talk about it directly...you all must know, this is about liability of the powers that be , whoever that is. it is anyone's right to request this and it should be observed by members. i admit i had not read all of the rules. and yet it is ok to talk about self-abuse for instance, with no backlash. personally if one is triggered, this is a trigger for many...a documented fact.

    i apologize for upsetting anyone by my letter. i was telling you all the truth and asking for support, which i received plentifully. if i triggered someone, i am deeply sorry. however, i now feel guilty for asking for help the way i did. and while i am on the rant, what about asking someone if they have "found jesus"? what if i have found buddha instead...how does one address these differences without alienation. can we talk about childhood abuse or just make reference to it? where do we draw the line and tell what our hearts cry for....how do you walk the line between truth and TRUTH??? i am very confused and dissappointed and more depressed than ever...now i feel like i don't belong here either...i do not play victim and that is not what this is about. i am looking for a place to share and support one another during the hell of these illnesses, including depression, especially during times of crisis...sometimes it is cathartic to simply write, knowing someone is listening and will respond. that was my hope...many of you are so sweet and giving and helpful in your suggestions but when one is feeling vulnerable and fragile, a mention of how they wrote their letter wrong only makes things worse.
    linda
  2. Cromwell

    Cromwell New Member

    I am sorry you were hurt. I did not see your other post, but it could be the person who wrote was trying to "save" you from being banned.

    The parameters on the rules are quite narrow. I think mentioning "very very low" "cannot cope" etc is OK. It is just a rule not to go beyond that. You may want to write to Prohealth and ask them for guidelines about the set rules. I hear you, and do sympathize, but I also know that without the rules some people really would go overboard. It seems harsh but it does actually work to keep biases at bay.

    Well, in any case I do hope you are feeling a little better and know you absolutely DO belong here. It has taken me ages to try and get my wording OK and even now I slip up. There is also a depression board here too that may help you as well.

    Have you any counselor or real life friend you can turn to? I know when I am low that even a comment that was intended well can really set me off. Please try not to let it get to you and try and be good to yourself. Depression and sadness are a major part of this illness. Many people here get this way a lot.

    Please try and recall the positive answers you got and big hugs to you.

    Love Anne
  3. rockgor

    rockgor Well-Known Member

    You sound better than on your previous post. More organized. Less frantic.

    The question of truth is interesting. Ever hear something like, "She was going through all that and she never complained. Had cancer and never said a word about it. etc."

    Well, that's stoic, but is it honest? Should you shut your family and friends out of what your life is? Isn't there a balance between being a whiner and being a liar?

    I tell people what's going on, and I listen when they want to tell me. No need to talk about problems ALL the time, but I am not going to pretend either.

    STick around. This board is a good place to share experiences, jokes, recipes, info, etc.


    [This Message was Edited on 09/29/2006]
  4. dononagin

    dononagin New Member

    oh my gosh.. it was never my intention to make you feel bad. Trust me I have been where you are and I know how hard it is.

    I've been around this board for along time though and I've seen people banned for useing that particular word and I don't want to see it happen to you. Even though the intentions are pure management sometimes follows the rules of the board to the t, as when they make exceptions they feel it isn't fair to everyone else.

    I was trying to protect you. I wanted to see you stick around and get the support that all of us need. I wanted to be your friend and be there for you when you need someone to talk to. I didn't want to take a chance on losing you from the board when you are feeling vulnerable and needed support.

    Please do not leave the board because I brought up the rules. I wasn't trying to alienate you in anyway, but to keep you here. You do belong here. I almost didn't put that line in, but as I said I've seen it happen and I truly, truly was trying to protect you. I would never ever want any one here to feel bad, gosh knows we feel bad enough on our own!

    My intentions were truly pure of heart from someone who has had very deep lows and survived them. I am very, very sorry that I made you feel bad. It was honestly never ever my intention.

    Sincerely,
    dona
    [This Message was Edited on 09/28/2006]
  5. lascot

    lascot New Member

    dona,
    youwere right and i got the letter in my email reprimanding me for my behaviour here and a chatroom.

    ummm, i responded back to clarify to myself just exactly how one communicates here about depression and serious illness without using upsetting terminology.

    i am very sad and depressed...it feels like abandonment, i hope i can say that.

    love llinda
  6. KelB

    KelB New Member

    You're not abandoned linda, we're still here for you.

    As well as having legal obligations, the Moderators are trying to protect those of us who are in a very fragile state, and might be made more ill if they felt that a life was in their hands.

    Please stay with us and keep posting as best you can. The people who read your posts will understand, whatever terminology you find. Plenty of us have been where you are and we will help if we can.

    (((HUGS)))
  7. dononagin

    dononagin New Member

    Please don't feel alone. We are truly here for you. As for useing the right words.. I know. Sometimes it is hard. I lost a great friend from the board here who was trying to help me with my extremely depressed teenager. I still feel like crud over that. She was just trying to help me. I think that's why I was trying to warn you. I just don't want to lose anyone from the board that needs us.

    Linda, you will find the people here really do care. And we are here for each other. I've been coming here for 3 years already. I can't tell you how many times this board has saved my behind!

    Linda, alot of us have been where you are. I think honestly that we can understand each other better here than anywhere else because so many of us do suffer from depression, we all deal with chronic pain, with fatigue, with losing our old selves to this illness. We know.

    I think most of us too have been through enough to read between the lines. I hope to get to know you better, and if you need me any time.. I'm here.

    Hugs and love,
    Dona
  8. 69mach1

    69mach1 New Member

    listen to cromwell she knows what she is talking about..i have tried to save a few from getting niavely banned..because they posted their emails...etc,,

    we understand but rules are rules..

    rockgor is right on and so are the others..

    hgus to you and i will go to depression side at times as well

    so you are not alone..

    jodie
  9. Slayadragon

    Slayadragon New Member

    I had a discussion like this with my former therapist once. I was feeling perfectly okay at the time, but I thought it was a good theoretical discussion to have. I said that I thought that if in the future I started to feel really down (substitute verboten word), I should know what she would do in response. My point was that I said that I thought I should be able to talk about whatever was bothering me in therapy without worrying that I was going to get thrown in a mental hospital. At first she said that she felt like it was her responsibility to make sure her patients were safe. Then we discussed it some more, and she said she would consult with "the family" first. Since my relationships with my parents etc. are on the shaky side at best (which of course she knew), I said, "Oh, that's a great idea, thank you!" Then she said she meant my husband, and I said, gee, it's good to know that my relationship with him is the only thing that's keeping me from getting thrown without my consent into a mental hospital. Then we talked about it still more, and finally she agreed that unless I threatened to take action, she would allow me to make my own decisions. That made me feel much more secure in the relationship, even though I never have had more than extremely fleeting and hypothetical thoughts about that topic (mostly when I think about the idea of CFS never going away) since.

    (My psychopharmacologist's response to these comments is to say, "Do you think there's any chance that you're going to actually do that in the near future?" If the person says no, then he requests that a) an appointment be set up for a med change at his office within the next week or so, and b) that the person get in touch with him if indeed the feelings increase to the extent that action is seriously being considered. I tend to think that this is a better approach (since it gives the patient hope that things will change and thus that waiting is a good idea rather than totally freaking them), but it may work better for doctors who prescribe drugs (where fast improvement is possible) than those that just use talk therapy.)

    I bring this up just to point out that it's a tricky topic even for therapists to handle, even though they've presumably thought about the issue to a great extent and discussed it with colleagues in school and during their careers.

    I once was on a bipolar board (actually rather a fun one since at least some people were in a good mood at least some of the time) where one of the members threatened to take action and then disappeared for several days. People got kind of freaked out. Eventually the person did reappear, but there was some worry in the meantime.

    I tend to think that on this board, the idea that someone might take action would _really_ freak people out. Almost everyone on the bipolar board had had those thoughts at one time or another and therefore were less upset by them.

    It is my observation during my short time on this board that many people get freaked out _really_ easily. Look at the 80 or so frantic responses to the woman who reported that her husband had a bad temper, yelled at her on occasion, had threatened divorce on several occasions, and had recently threatened to threaten to harm her (by saying that maybe if he threatened to threaten drive the car off the road, she would talk to him instead of remaining totally quiet). I'm not saying that she was right to stay with him (if she was truly fearful that he was going to harm her soon, I believe she should have left)---just that the extent to which people got emotionally involved in the situation (to the extent that I suspect their stresss levels went way up and their CFS symptoms were thus exacerbated) was on the high side.

    It would be nice if there were no verboten words and if instead there were a very good predictor of which posts were likely to really upset other members. Other people's responses to comments are hard for mere mortals to predict, though. And with so many people on this board, I imagine it's pretty much impossible.

    On the other hand, the moderators do have the obligation to use common sense with regard to posts that include mentions of things that might be mildly offensive to some people (such as "marital activities") but that wouldn't cause them to flip out in alarm that something horrible was going to happen to someone.....if those things havve to do directly with CFS symptoms. Note my recent post on deletions, for example. The rules here really do need to be a bit more specific to particular situations than they are now, I think.

    Good luck to you. I hope you're feeling better emotionally by now. If you keep working on getting better from CFS physically (there are lots of suggestions online and, more so, in the books I recommend in my profile) hopefully you'll start feeling better emotionally all the time. That's what happened to me, anyway.


    [This Message was Edited on 09/29/2006]