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Well.....
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debw216 posted:
Well, really don't know what to say here.... I will say however that I really don't feel all that welcomed here anymore. I feel that there is a certain, "click" here....

I have noticed, that I hardly ever receive a response to some of my posts....

Ali....THANK YOU so much for all of your kind words!! I cannot even express what you have meant to me during this horrible time in my life. Maybe we can talk through email.... DebW216@yahoo.com . I would really love that.... And if not, let me say that it has been such an honor to get to know you.....

Also "twisted Jim"..... :) You have made my life so much more tolerable.... You are a real treat and I have had so much fun going back and forth with you!!

I just know that I am not the kind of person to think that things are, what they are really not....

I do know that I have made an effort to respond to posts only to have them basically discarded.... Not even a mention, not even a response....like it was never there to begin with. Well, im sorry to say but that does hurt....

I won't mention names...but I think those people know who they are.....

I also think that its not a good thing....and its basic considersation, to respond to someone who has responded to you. Plain and simple....it is basic manners....

I just know that I have responded to people only to have them not respond to me.... And that in turn has hurt my feeling....over and over again. So logging on to this site.....for me.....had become hurtful to me. And I simply can't have that anymore.... Because I am struggling to survive here....

I will certainly miss everyone.... Especially a few....

I wish everyone well.... I wish everyone peace....

Sincerely,
DebW
Faith is daring the soul, to go beyond what your eyes can see.
Author Unknown...
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1wareaglefan responded:
Hey, Deb. I am so sorry you are feeling this way. I'm pretty new to this sight....only a few weeks. I'm just kind of learning how this all works. I enjoy reading the posts and getting to know folks through their experiences; plus learning a lot of great info. I don't always respond to folks, but I do feel a connection just in reading what's going on with them. Sometimes I'm not able to keep up with everything that's being discussed due to outside responsibilities, but I do try to check in as often as I can.

I hope you'll continue to write in. I have learned that these people are basically a caring group, and I don't think anyone purposefully meant to hurt you. Please stay connected here for support...ours is a tough illness to live with, and we need all the encouragement we can get.

Best wishes to you, and God bless! Elizabeth
 
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pnaturegirl responded:
Oh Deb,

I am so sorry you feel that way.

You have always cheered me up and encourage me after reading a response from you and I always appreciated it a lot!

Between my Fm and Pots fog, Sometimes I forget to anwser but it does not mean I do not appreciate your friendship.

I hope you rethink things and try not to take anything to personally. I think most people here would never intend to make you feel badly at all!

Take Care,
Penny :wink:
Check out my facebook page called, This Crazy Thing Called Pots My new Exchange on WebMd called, Pots and Dysautonomia Exchange and you can always find me here on FM Exchange or through my email!
 
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pocotaz responded:
DebW,

I am more of a lurker now then in the past and so i visit when i can..i work 40 hrs. and have extreme pain when i come home that it can be difficult for me to keep up with all the new people and responding...

I wish you didn't feel this way..when i first came on board here i was in such dispair..my thoughts were of darkness and i felt useless to anyone including myself..why live i thought...but i found this group...

They truley care but i have been looking here a lot lately and elswhere and i see so many hurting from this weather... they are hanging on also...

Then there are so many new people coming here for help... it's sad that sometimes people can get lost..not on prupose.... please don't feel like it is on purpose...

I too have posted to others and gotten no response ..but i see a different perspective and i understand how things can be for others... so i don't let it bother me.. if i get a response then it is becasue they felt good enough to respond and if i don't maybe they didn't or couldn't come back because they were flaring...

So many lives with so much always going on.. i am sorry you feel hurt and neglected... i am here and then i don't come in for a bit because i have severe fatigue and often so i can only check in once in awhile...

Please reconsider and try to see that it realy isn't you..nor done on purpose... it is so hard for lots of people to want to respond or have enough energy to..

I am sorry.. and hope you chosse to stay and read and post when you can as well... they really saved me from myself..but i don't visit like i used to ..not because of the others here..but becasue i am tired and an only be here for short periods of time...

Many hugs to you... Linda
 
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TCL38 responded:
Deb,

I'm so sorry you feel this way but I do totally understand what you're saying.

I truly hope I'm not one of those people. I don't think I am since I hardly post anymore. I've gone to mostly lurker mode for a related reason. But if I am please except my most sincere apology. I am under an elephantine amount of stress right now and have more irons in the fire than a mideival blacksmith...lol

My recent philosophy for the board has been seek the positive and ignore everything else.

I hope you'll reconsider and stick around. Your humor helps.

Tanya
 
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Dollbug responded:
Hello DebW....MiMi in NC....I am sad that you feel this way....I do not think anyone meant it to be like this....I do not always read everyone's post every day....but most of the time I will read what I can....and sometimes....I do not go back and re read anyone who posted at a later time....

This exchange moves fast....and perhaps this is what happened in your case....I do not think there is any kind of
"clique" here or perhaps I have not seen it myself....I will say this much....people join and then disappear....some stay, some go away....some lurk...and some post a lot....or a little...I know that some of the old members now post on FB more....and some of them did not join the new exchange....I do not do FB, although I have a user id....(only to post on other places...which requires it)


But this exchange is for anyone who cares to be a part of it..
as with anything else...."a person only gets as much as they give".

I am sorry that your feelings have been hurt....

Take care and good luck with your FM....please remember to keep up with your Vitamin D level...

MiMi
 
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MagPrincess replied to Dollbug's response:
hi everyone

I have to say I am with Deb on this. I have noticed this change as well. It has been the main reason i went into lurking mode. the support i used to get here just isn't here anymore.
 
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teddybear200 responded:
Deb I have felt the same way that is why I haven't posted much either. Ever since my surgery I have read, posted a few times but got nothing to my replies to other people's posts either. I feel like I don't belong that "the click" has been here longer than me so why bother. Deb.
Some day I will soar on wings of an Eagle - Deb
 
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CLKWC1964 responded:
DebW,

I am so sorry this has been your experience. I agree with the other responses here. There have been many times I have posted and got no response but I understand that not everyone is going to get a response every time. Certain posts will catch your eye and you read it and if you feel compelled you respond. This cannot be your only means of support. FM is much to hard to deal with. But honestly if this has been a negative thing for you it will probably only make your symptoms worse to continue to come here.

However I hope you will reconsider and realize that you may not get a response to every post. Sometimes I get more out of reading others posts and find that at times it is something I easily could have posted myself therefore the advice may also apply to my situation.

I think there are a lot of really sweet, kind, encouraging, and supportive folks who are in a dilemma just as we are. Some of them have become very close to each other and may appear to be a click but this is just the way life is in general. It can be hard sometimes but we just have to take what we need out of situations and try to make the most of them.

I will keep you in my prayers and hope you will do the same for me. Take care and God Bless. Cat :0)
 
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Socialwrkr responded:
Hello everyone,

I'm really sorry to read of so many who feel that they are on the outside of this group. It's sad to think folks have left for this reason.

If I can maybe help shed some light.

There is a core group of people here who have been on this board for several years. Way back, three or four different systems ago. And some have even met each other. Penny and I live about 20 minutes away from each other and she comes to the group I host. So, we have built a friendship outside of the board.

And, after being here so long, sometimes it's really hard to go back over things we have dealt with time and time again, especially when we do put a lot of info in a post, to have that person never come back again. It's hard to explain what I mean but I feel sometimes like I invest so much emotionally to reach out to newer folks, to have them not come back. So you get that burned reaction, where it's harder to reach out, because you wonder when folks are going to leave anyway.

And, just like all of you, we all have high pain, fatigue, etc etc. It's hard to maintain the positive and the education outlood we strive for. I know that here and on my facebook page, many folks are saying this has been the toughest year ever for them, so myself, I'm seeing a lot of people pull into themselves.

I hope maybe this helps a little to understand. I don't feel that I'm part of any real click, and I certainly hope I haven't pushed anyone away. But being a part of a support group, online or in person, means that there are times our feelings will get hurt. Deb, I really admire that you were able to put this out there and clearly there are other's who appreciated that and are able to say they felt the same.

I hope all of you give it another go, be honest if you feel something is happening that shouldn't and lets move forward and be there for one another.

Take care everyone
Be Gentle on Yourself!!! ~~Aimee
 
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An_199013 responded:
DebW,

I felt the same way as you do when I first joined this exchange. I spent a lot of time typing my introduction post and didn't get one single reply. Ouch!

Then I noticed that too many of my posts where not getting replies. I felt that there was definitly a "click" and a strong one. I'm sure that my list of names would be very similar to yours.

I was going to leave the Exchange due to this "click", but then I
decided to look at it in a different light.

So what if there is a "click"(Vets who post to each other a lot).
If I should become more familiar with a certain member of the Exchange, I would probably post more often to that member, too! Heck, some day I may be part of that "click".

The members of this click don't direct any hurtful post towards me and they have provided me with some helpful information and support. They even got me to cry for heaven's sake!!!!

A lot of my posts don't get replies. It takes a lot of time to read all posts and typing a reply to all or most takes way to long. I also understand now that someone may not return to a thread that they had previously posted to. So my reply to them, didn't even get read let alone a reply back.

I now understand that some of my posts just simply may not have caught anyone's interest or it caught a lot of interest, but no one took the time (or had the time) to post a reply!

I hope that you can stay on this Exchange! Some day you will be "touched", you will be supported, and you will receive valuable information that will help you to live your best life now!

If you do leave, I wish you the best!
 
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ednaroberts1978 responded:
Deb,

I am sorry that you feel this way. I'm hoping that I am not one of those people, but I have mainly just been a lurker here. I post on occasion, but only when I feel I can help the other person. I am still relatively new to this illness and I'm still learning as well. I try really hard to respond to those posts who have not had a response, even if it is just to let them know that they are not alone.

I have posted a few times, and received very few responses. I don't believe anyone was trying to hurt my feelings, but may feel like I do, if I cannot add anything helpful to what others have said, I don't. It's not a matter of not wanting to respond, but rather I don't have any good advice or helpful hints.

I have received a lot of wonderful advice here and learned quite a bit from this website. I believe everyone here does care and understands, but some days are just harder for people to check on the boards.

I hope you reconsider, and keep posting on the board, as I do read through as many posts as I can everyday.

Take care,
Edna
 
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An_199014 replied to Socialwrkr's response:
I haven't been on this Exchange very long but I did notice frustration caused by repetitive questions.

I have been trying to direct members, who are asking a question that has just recently been answered, to the previous Thread that answers their question.

For you Vets out there and poor Dr. Pellegrino, I (a newby) apologize for causing you to be frustrated! I now completely understand why some posts don't get replies!

I have learned to use the "search this exchange". This works great to search for answers before posting the question.

Alls well!!!
 
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icyhotmama responded:
For some reason I have been in super duper hurting mode. It hurts to watch TV, type, or do anything. The 95 degree weather has really gotten to me. But I wanted to say to Deb, Erin, and teddybear, all of us get missed on a post every now and then, I don't think its because of any click, or anything else.

Erin, with all you have been going thru, I have really tried to be there for you, I have missed your posts since you don't post during the day anymore, anyway please stay around ladies, and remember, there are just days that none of us feel good all the time, and we will miss you if you leave us.

Take care,
Lydia
 
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Dollbug replied to An_199014's response:
Ladies and gents.....MiMi in NC again....I was looking around to see the posts which have been put on the exchange and the number of replies that each of them had....you can do this by clicking on the blue names of whoever you want to review their posts.....I was quite surprised myself when I did this...

It was interesting since I found just a few in number that had less than 2 replies....some of them had 10 and some more or less.....but since this exchange I see but a few with 1 reply....

And yes....there are a lot of the same answers for a lot of them....I am guilty of doing this....as when I first joined this exchange.....I made it my own personal mission to make sure that I mentioned Vitamin D and just how important this is to people.....I did this only because of the sheer pain and suffering that I experienced in the beginning.....when my doctor insisted that I was just depressed....so probably 90% of my replies have something about Vitamin D....and more than likely the next 1000 posts by me (which this is close to what I have posted since we transferred to this exchange, I guess) will also have Vitamin D mentioned in them also.....

I am here because I enjoy being here.....I try really hard to get the word out on things that others might try that may or may not help them....I am part of the FMily....and I give what I can when I can....perhaps someone has benefitted from something I have posted or not....

Life is very short....I know that no one can please all of the people all of the time....if it were a perfect world....then this might be possible....but it isn't...so I only do what I can do when I can do....no more or no less....

Now....with this being said....there are times when I do not have any kind of reply to someone's post....not that I do not care....but I do not have nothing to offer....

Again.....I think this is life anything else in life....you only get what you give....you give a little, you get a little...you give a lot...you get a lot....

That's my story and I'm sticking to it on this Saturday in June....

Take care...


MiMi


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