A little irritated..

Discussion in 'Fibromyalgia Main Forum' started by ForeverFlaring, May 29, 2003.

  1. ForeverFlaring

    ForeverFlaring New Member

    I replied to a post and it was deleted. A young woman with Lupus posted her story for us to read. It was a heartfelt and emotional story. The response back was not one of support but of ridicule. There was no compassion, simply the words, "wrong board again" even though this was only her second post. She may have intentionally posted her story here as some of us do have Lupus as well.

    Are we not a support group here? Isn't one of our moral duties as people who suffer from similar autouimmune disorders to show compassion and empathy for others?

    Taking aside the post I mentioned, I love this board. I love the caring that I received when I first came here and how I was welcomed with open arms. I will always try to reciprocate that to others.

    I am sorry if this is coming out the wrong way. I know I sound dreadfully whiny, but I never believed in knocking someone when they are down.

    Plese lets just treat others the way we would want to be treated.

    God Bless.
    Sandy (FF)
  2. Cactuslil

    Cactuslil New Member

    Sandy...I haven't read the post you are referring to but I have seen the comment .... go to the yada-yada board this is for FMS et al.
    I too was rescued three years ago by the members of this board and feel an obligation to return and participate; which I do as I battle other related ailments that have cropped up as the three years have gone by.
    I am learning there are common things all of us endure, cope with and learn to live through regardless of the illness; the chronicity of our illnesses joins us all. Lil'
  3. Dara

    Dara New Member

    referring to, but I do have to agree with you. There are a lot of posts on here that do not directly relate to FM or CFS. There are some posters who have posted their first question or comments that don't relate to FM/CFS at all. Also, I've noticed a lot of personal one to one posts lately, and lots of spiritual postings. These, I would think, should either be on the chat board or another board. I'll probably get lambasted for that comment, but it's how I feel.

  4. judywhit

    judywhit New Member

    there are some great folks on that board but they are few in number. I did not see the post either. I feel terrible it was deleated. As many know the symptoms overlap and any of us could develop more lupus symtoms since that is a hard DD to diagnose also. I have tested positive for the ANA antibody test. So do I have lupus??? I would hate to have to leave this community because I was wrongly diagnosed.
    Sandy, perhaps you could include in your post title "irritated about lupus post being deleted" that way it might get the persons attention who deleted it and can find out the reason.
  5. jolly

    jolly New Member

    and some people tend to forget that sometimes. I, too, was saved from daily crying binges by the sweet people on this board. I guess when there's as many people as there are on this board, you're going to have posts from some that are having a bad day or being picky. I didn't see the post you referred to, but hate to see anyone not supported and encouraged no matter the nature of their problem. Hopefully, the lupus lady will return. Jo Ellen
  6. MemoryLane

    MemoryLane Member

    I have often thought that. I know that the other boards were created out of need or request, but I feel all the topics on those boards are relateable to many here. I hate to see people told - "wrong board", because I know they won't find answers or compassion there.

    The Depression Board is...well depressing - I have gone there for fear of posting here, but they are not very active. Same with the other boards - they can't help each other either - that is apparant. I think of all those poor other posters being left out or missing out on all the valuable information that possibly could help them here.

    I have often wished there was just one board, but I know it would get really wild.
  7. foreverdream

    foreverdream Guest

    i am guilty of personal postings, but dont know of my other options cuz im new to this whole message board thing. you said "other boards." what are they and what are all my options? (sorry ive upset u, i just dont know what im doing).
  8. ForeverFlaring

    ForeverFlaring New Member

    I am sorry I didn't mean to cause an uproar or anything. I guess I felt sorry for Lisa (the girl with Lupus)and as I felt sorry for her, I was angered by the replies to her post. That made me even more sorry for her and the anger of the replies made me post. Then the whole thread was deleted 30 seconds after I replied, which in turn made me angrier.

    I really didn't post this to cause trouble. My intent was just for people to take a breath and realize that they are not the only ones suffering.

    If I came off as a trouble-maker that was not what I intended to do. I'll just leave it at that.
  9. jka

    jka New Member

    i totally agree with you!i've had lupus for 16yrs. and would have loved to of had somewhere to go.if this isn't the place to talk about your feelings and what you are going through-where is it?she should have been welcomed first and then explained that there were better places to go talk.we should make people feel welcomed-not like they have done something wrong.

    kathy c
  10. AnnetClo

    AnnetClo New Member

    I did a search for Lisa and found the post you were talking about. I sure hope she tries us again cause her first contact was a little rocky!

    Her story is so sad and her symptoms sound so familar. I know I have been whining some lately about depression, poor me! But I didn't know we had some many young people on the board who are suffering so much. What a horrible thing to deal with in your youth. Such a loss.

  11. Princessraye

    Princessraye New Member

    I emailed and suggested she read this thread and let her know we care.
  12. loopyloo

    loopyloo New Member

    I dont no if i read that post but i agree with everyone she should have been welcomed to the board as everyone else is and the bit about the depressing board being depressing made me laugh but not in a horrible way in a nice way as i have been very tearful and dizzy lately and its not because i'm Blonde its because my blood pressure is 150/106
    (((((((big hugs ))))))))))))))
    Loopyloo xx
  13. Dara

    Dara New Member

    what makes you think I was referring to you? I don't even know if I've ever read any of your postings. There are lots of personal posts on this board. As far as using other boards, I have no idea which ones you are looking for. If it's FM or CFS related then I would think you are in the right place.

  14. Mikie

    Mikie Moderator

    It was obvious that she was wanting to contact others with Lupus and probably just clicked on our board by mistake. I know a lot of people with Lupus and MS have FMS as well and everyone is welcome here, but I felt from reading her posts that she was interested in a Lupus support format.

    We have had enough problems on here lately, please let's not let this turn into another accusatory thread with hurt feelings and anger. We have bigger fish to fry than turning on each other.

    Love, Mikie
  15. ForeverFlaring

    ForeverFlaring New Member

    I wasn't trying to turn this into an accusatory thread, nor were my wishes to have anyone turn on each other. I apologized earlier in this thread stating that I didn't want this to turn into an uproar, and that the intent WASN'T to cause problems, only a desire for people to treat others the way we would want to be treated. I am very sorry that it was taken this way.

    Best Wishes to all of you and God Bless.

    Sandy (FF)