Goodbye

General
1

Please feel free to read; however, there is no need to respond as I will be deleting my account after I post this discussion.

I have known about my Chiari since the summer of 1999 and have been dealing with it on my own and with my family without any other support. When I found this site I was excited that I could "talk" to others with Chiari and no longer feel alone. I have found some good information from this site or have been pointed to another website for info by this site. For all of that, I thank you and the creators of this site.

As to support from others on the site, my experience has not been anywhere near what I had hoped for when I started. I would like to suggest to anyone that chooses to respond to someone - whether it be by email, or a post or whatever - you act as if it is your son or daughter (or your parents or a loved one if you don't have children) when you respond. Act as if you are in a teaching moment showing your young child how to do something for the first time. Don't treat them as if they should know better than asking the question and are stupid for not knowing the answer. And one more thing, your answer is not 100% correct and you are not an expert in anyway shape or form. You have an opinion, only. And that opinion is based on what has worked for you. As we all know, each person presents symptoms different and has different success to different treatment - both "natural" and medical. So, while it is more than appropriate to advise what has worked for you, don't act like your answer is the best answer, or that someone else's answer is something you should never try because it didn't work for you.

I have seen people argue about the best type of doctor that a mother with a newly diagnosed child should choose, but instead of actually just answering her question and trying to comfort the scared woman, you all argued about the right doctor and how someone else's answer was wrong. I myself have posted at a low time on a bad day and, much to my dismay, I actually felt worse after reading what people responded to me. I haven't made many posts; however, I can't think of one time that I felt better after reading the responses. And you "moderators", before you assume that you are removed from this, you all account for more than 50% of all the responses. In my opinion you are the worst of the bunch when it comes to responding to someone. You all are worse than the know-it-all doctor that doesn't understand Chiari.

In closing, I'm sure this will mean nothing to anyone on this site; however, it means much to me and the support that I desperately needed and wanted...but never received.

I wish you all health and success in the future.

Regards,


Jay_Tree

2

All I can say is that I just feel awful! I wish Jay_Tree would have let us know how he felt before now...

I am hoping that if any members here feel as though they have not gotten the support they need...please let us know...we are doing are very best to help..unfortunately, as we all know, life issues come up and I personally am guilty for not replying quickly...please forgive me, dear members for this..

3

I hate that Jay_Tree has left feeling this way. I do try to respond to as many posts as I can especially if I feel my experience will be relevant. Sometimes all I can do is offer sympathy. I try to stay positive and I truly want each and every member to find this as a safe place to air questions and concerns.

That said, it is hard not to use your own experiences as a basis for giving advice. For example, It's hard for me to give someone encouragement about an upcoming visit with a NL because I've been dismissed by so many and have seen so many members get dismissed and given bad info. So it may sound argumentative to say skip the NL and go straight to the NS but it comes from the heart. It's just wanting to save other people from getting discouraged. I try to see all sides of things before giving advice but all I know for sure is what worked for me and what worked for others that I'm close to. We all have a perspective and really even if we give conflicting advice as long as it's done kindly it just opens dialogue and gives the original poster several options to look into. In the end you need to go with your gut and with the advice of a doctor you trust. Just like in a real life conversation when you bring up a topic you'll find not everyone believes the same thing you do. Take these disagreements as a learning opportunity. Don't take the advice as a mandate but as a suggestion.

Like Beeba said we put in our time without pay because we want to help people. Sometimes we may not come across as we intended but we wouldn't be here if we didn't care! I do hope other members will let us know when they feel uncomfortable. Please don't leave! Just let us know so we can strive to do better!

4

As the new guy I wanted to explain why I "liked" this post. It may be upsetting to some to see someone leave this site and leave in this manner. Academically & philosophically, I think it's nice that it opens up the discussion/topic. Both here on the discussion boards and within ourself. We get to have a reflective moment. The natural reaction is, "oh no, have I done something wrong". And then we can move on further down to where we can choose to change and do better (even if we aren't the ones to blame, we can always improve). And then there are the ones that will naturally think they did nothing wrong and wouldn't change even if they feel they are to blame. This is why that I have liked the post and thought it prudent to explain. This post does not initially give one a feel good sense...but if you peel the layers of the onion back, it provides us a chance to understand we aren't perfect, we can always improve and that for others that can't change, well, we love you the way you are. ha ha ha Also, I see that the people that have responded are moderators. Certainly we can understand why you would be the ones to take this personally. Again, as the new person that has no clue of what has gone on, I would point out that this person didn't suggest moderators were solely to blame. This fact probably doesn't help as much as I intend it to, but hope it softens the sting a bit. Cheers

5

Thanks Billy....you make great points!! Welcome!!

6

In a group of people this big you can not please everyone all the time! When I first joined I got alot of messages welcoming me to this site from the "greeters" and "moderators". It made me feel so good. I had never been in a group were I recieved a personal welcome like that! As I started reading different discussions and hearing the replies from the moderators and members, I felt really good just knowing that these people could relate to my CM and my chronic pain, when no one else in my life could, I felt at home!

I guess everyones idea of support is different. This person obviously did not feel they were getting enough of, or the right kind of attention and everyone is entitled to their own opinion. On the other hand we all know when we read a discussion we don't always like or agree with the replies, but we take what we want from it.

I was recently offered a greeters position, and I was honored and gladly accepted because It is my way of giving back to a community that has given so much to me! I have made some really good friends on here and a few are moderators. Some of the moderators I have not yet had the pleasure of getting to know, but I do know one thing...If I ever need anything, all I have to do is ask any one of them and they are more than happy to help! They are like that for all the members here and that right there shows you their unselfish devotion!!

I think it is wonderful that ALL of us on this site get together and help and support each other. There is not enough of that in the world today!!

Thank You,

Sparky

7

I think the problem may not be with the replies any member receives, but with the overall facts about a board like this one.

If you have problems, you are likely to be here, looking for support. If you have surgery, recover nicely, and get on with your life, you probably disappear (like I did for many months).

The slant of this site, then, even with tons of support, is likely to make it LOOK like "everyone" with Chiari, surgery or not, suffers from long-term, ongoing problems, and finds it difficult to get appropriate medical support and guidance.

I know you recently started a group called "Success Stories," which is what brought me back to the site. I was very aware, going in to surgery, how much many of you have suffered and continue to suffer. Sympathy and advice for those having trouble is great. But it just looks scary when it is all you see!

I don't know how to go about this, but if there was a way to try to track those who disappear from the site, asking for a quick response on how well they are doing with their Chiari, perhaps we could give our members more of a sense of hope.

For me, for example, on a scale of one to ten, with one being incredibly incapacitated and unable to do anything for myself, requiring serious medical support to stay alive, and ten being all but ready to go to Olympic Trials in the sport of my choice, I would rate my own health right now as an eight.

To make it graphic:

Health Scale, One to Ten

One--incredibly incapacitated, unable to do anything for myself, requiring serious medical support to stay alive

Ten--all but ready to go to Olympic Trials in the sport of my choice

I am an EIGHT.

If we could show our members some hope, I bet they would appreciate that a lot!

8

As a parent (step and only pointed out for the genetics of the situation) who was told that her fraternal twins both had a rare condition (one genetic and one congenital) within one year and two weeks of each other I think I can understand a bit of what the OP meant.

Over the last year I have developed pretty thick skin. I've dealt with enough online support forums (where tone and inflection are difficult at best to grasp) to read responses, take in all the information and throw out that which is not helpful to me or does not apply to my situation. I posted one blog here about how my daughter (and yes me) felt like her entire world had been destroyed. Several people, while trying to be supportive and uplifting, stated "her life is not over" and while this is important to remember as a newly diagnosed family member it was not supportive. Rather than acknowledging the pain of diagnosis it brought about feelings of shame, being a 'cry baby', and yes even unworthiness.

When given a horrible diagnosis, and yes AT diagnosis it is horrible, it feels like your life just blew up in your face and you have no idea where to step from that point. What may seem logical and even simple steps are just not recognized for those that are in the middle of a crisis. To someone who is hurting (emotionally/physically) it is easy to 'see' the answers as not what you were looking for or even as hurtful.

Even when asking for medical/surgeon advice I would offer that many asking (especially NEWLY diagnosed) are not even at the acceptance stage yet. They are frantically searching for anything that even remotely resembles what they are going through. It is easy to get discouraged and feel unsupported despite the best efforts of others to give advice and support. I don't know the OP's situation or exactly why they (he?) felt unsupported but I hope that they find what they are looking for.

I am glad to see the mod's answers to this post and the self-searching that many of you did when faced with the OP's post. It was refreshing to see the mod's reflect on their behaviors/posts and not just to the OP but as a whole.

9

I hope you all understand that we as a group do appreciate what you moderators do for us all. And not to be disrespectful or out of line, but isn't it a little shortsighted to state

"I am truly sorry we have folks feel that they did not get the support they need on here, but fact is, we did give support. It may have not have been what they were looking for, and maybe it was time for them to move to another support group."

Simply answering someone's question or responding to their post isn't necessarily support. It's just an answer or a reply.

I think we all realize this isn't a site where we can obtain professional therapy or that this is a professional support group. But it appears that this started with one person stating they weren't satisfied and leaving the group. Perhaps, this person shouldn't have left the group like this (I think we are all in agreement to that). But the fact is that there have been a few others that have posted that they can relate to the original post or the frustration of the original poster. So, this wouldn't appear to be an isolated event (nor does it appear to be at epidemic levels). And I am sure there are others that can relate, but for one reason or another choose not to chime in.

The last post concerns me the most.

I can certainly understand that this felt like a personal attack to the moderators. Again, this post did not state that the moderators were solely to blame - just that they were not exempt.

As patients that have gone through misdiagnosis after misdiagnosis as well as others in our lives that simply cannot understand (much less relate) to what we go through with this illness, sometimes we just want someone to say:

"it's ok, I understand".

"hey, I've been there, don't give up hope. This may not help you, but this is what I did…".

Or we just want/need someone to listen to us without judging us or simply need a shoulder to mope on in a weak moment.

And, as one of the prior posts stated, we don't want to feel shame or made to feel like a cry baby or unworthy due to our posts.

We all have our good days and our bad days. Some have more of one than the other. Just because we may be on a bad day and someone is on a good day, we shouldn't feel as if we have to suck it up. Because, as I know most if not everyone on this site has "sucked it up" more often than not. This should be a place where we can come and not have to suck it up. This is where we come to be understood and seek empathy…not apathy.

Cheers

10

Wow. That pretty much sums it all up now doesn't.

I'm glad this was the first topic I chose to read, follow and post to as a new memeber. It has definietly shed some light on the fact that this may not be the site for me.

Cheers.

11

there's time i think this site is not for me either billy. i've had posted on here before and have'nt had much support either were i thought i was just nuts. i'm glad you spoke up. i will never post on here again but i will read the stuff to see if maybe any will help me

BillyS said:

Wow. That pretty much sums it all up now doesn't.

I'm glad this was the first topic I chose to read, follow and post to as a new memeber. It has definietly shed some light on the fact that this may not be the site for me.

Cheers.

12

Hi Guys....

My name is Lori and I am a moderator here...I will be the 1st to say that I have been the 'weakest link' here as far as moderators go! For that I am so sorry...Life issues happen and that is the main reason I have not been too effective , I think it has been for the last yr or so...The other Mods have picked up the slack and have been super supportive of my situation. Unfortunately, no other members have really wanted to step in and lend a hand as far as moderating goes....some are too ill, others work FT , plus dealing with CM/SM and family obligations.

I try and welcome the new-comer and tell them to always feel free to let me know if I can help in any way...and I do reply to those who reach out to me...I really try to respond within a couple of days.

I am pretty much a straight shooter and like when others are the same to me..tell me the deal..how can I do better? Have I written anything that offended you or possibly anyone else? I , certainly have much room to improve...this I am positive about!

I really think this is a good thing...to openly state how we are all feeling about the group...this is the only way we can get better.

I always just speak for myself...who am I to say what the other Moderators feel? I can just tell you all that I know them pretty darn well and they all have huge hearts and do the best they can...plus some! They are not absent for days like myself.

I have a brother in law who is more a brother than in law...he was Dx'd last yr with Stage 4 colon Cancer...2 mths before he was Dx'd my mom passed away in my arms...in his home....I take him to appts and check on him, as my sister must work...this is my situation and one of the main reasons I am not here all the time...I do still have issues due to the CM which is another story in itself...As we all know...Everyone has a story, a life that has its ups and downs...I wanted to share a bit about my story/life...so folks know that I do the best I can ...

Please let me know how I , personally can do better ..and I mean this sincerely.

Take Care , All,

Lori

13

Billy, Mitzi, etc - I'm the co-founder of the group and co-founder of Ben's Friends. We've spent the last 5 years dedicated to helping patients with rare diseases find support. For more info please go to www.BensFriends.org.

The Moderators here are all volunteers. They do it completely out of the kindness of their heart. Please stop and think for a second what a miracle it is that this site even exists. When we started, there were no sites like this in the entire world! And we do this on a shoestring budget, no one get's paid and the only reason we survive is because kind hearted moderators donate their time and other people donate enough $ each year to keep us going.

Maybe this site isn't for you, which is fine. But whatever site you go to, I hope you appreciate the sacrifice that those people are making for you. Empathy, support, and information are abundant here because the Moderators and other Members provide it. I hope you find greener pastures.

Tip of the cap to all the Moderators who make this site the little miracle it is and to all the patients who keep it an energized and lovely place to be.

Scott Orn