A doctor actually responded to a post of mine

[Guest Julia59]

I just wanted to reiterate that it is very important to use caution when posting comments about doctors.

I recently had a certain Doctor send me an e-mail about something I said. What I said was harmless and not slanderous in any way. He sounded a little confused, but I send him an e-mail back reassuring him, and reminded him of all the good things I posted. He e-mailed back---and said thank you for straightening that out and was very kind---if fact his initial e-mail was not bad. It was more in the form of---just stating his concern for my well-being.

As I look back on these posts I could not find anything relating to what he stated I said. I'm wondering if something I e-mailed in confidence got misconstrued and then forwarded to the Doc. I'm careful not to use any names unless my opinions are good----promoting the care and so forth.....

Interesting.------> I suppose---be careful of e-mails as well.

Unfortunately, there is a lot of unfairness out there towards patients. But we need to protect this beautiful website. I'm one who likes to rant about certain unfair treatment---but I am more careful.

Julie :0)

[futurehope]

That freaks me out. I am very cautious about mentioning names on this forum, but to think he might have gotten an email forwarded from someone else... That just freaks me out!

[ethansmom]

There is definitely some activity taking place on this board that we all need to be aware of- and use caution against. People are MIS-using the information posted on this forum fairly regularly, and it is not appreciated by ANY of us here who come to this board to seek advice and support from our friends.

There is a lot of information exchanged regarding doctors, and this is so important to all of us when we are choosing a new physician or inquiring about a current one. I completely agree with Julie that we just need to be extra careful from now on, about what is said in direct reference to ANYONE. It is worth the effort.

[Michelle Sawicki]

It is disheartening to think that someone would breach the confidentiality of a private email or the trust of one of their fellow forum members, but it happens. People who behave in such manner are not welcome here.

As long as anything you post is not libel, slanderous or against the forum disclaimer you should feel free to post. If you modify your behavior because of one bad apple you are actually giving that person exactly what they want. Having said that, you should also keep in mind that this forum is on the Internet and anyone can read what you post, including the people you are discussing in your posts.

Michelle

[DancingLight]

julie,

thank you for posting that.

it is freaky!

but, michelle is right...if we stop posting and sharing, they win. we just have to be careful...i am always so worried about saying the wrong thing on here...esp. b/c with email you can't always tell tone of voice, etc.

what do you all mean that information has be misused a lot lately on the board? i am confused?

thanks, emily

[MightyMouse]

Emily, what Michelle means is that information taken either from private email between members of the board, and/or printed from posts and forwarded to others either via email, fax, etc., such as the info given to Julie's doctor. While there is nothing legally wrong with doing so, and the internet is an open and highly public venue, we don't encourage the practice for a number of reasons.

First, the recipient ends up missing the context in which the original posts or email were shared. As such, information may be misinterpreted. Second, there may be reprecussions of such sharing, for example, if the identity of the person who wrote the post is able to be figured out, the passing of the post to a doctor, for example, might end up damaging an otherwise good professional relationship with their physician. This, in turn, could severely limit the poster's access to adequate care (while Julie's doctor was professional, unfortunately that's not always the case--doctors and other care professionals are humans too). Loss of a possible medical resource to a board member is especially concerning, as we know that many of our members live remote areas and have few choices, or have limited finincial resources to go elsewhere.

Again, to each of you I say, it's standard netiquette to only write posts with words you feel equally as comfortable saying to someone face to face. So, another area in which the board was misused numerous times in the past few weeks was with a flurry of "flaming" posts that Michelle and I had to delete, and/or edit, and or ban a member entirely. For those who don't know what flaming is, it is the practice of posting a personal attack, making threats, name calling, etc. with the intent of inciting anger.

Here's a website that describes types of flaming--tongue in cheek, but it gets the point across:

http://www.advicemeant.com/flame/12comand.shtml

If you want to read more about general netiquette that is used on most public forums and email listserve, check this link.

http://www.advicemeant.com/netiquet/

Michelle and I will continue to make every effort to keep this forum a safe place for it's members to post questions, ideas, and help each other. Members can help keep this an easier task by sticking to the basic rules of the board and general internet etiquette (aka netiquette). For a more complete netiquette guide, please see:

http://www.albion.com/netiquette/corerules.html

Thank you to everyone who continues to keep this forum a positive, useful and welcoming place. Nina

[DancingLight]

nina,

thank you so much for taking the time to post that and clear things up for me, and hopefully for others too.

this is a complicated issue! i had noticed recently on both ndrf and potsplace discussions that sometimes there was a lot of hostility towards another member or unkind comments made.

each time we post, we must remember the human being on the other end who will be reading what we write...

when in doubt, use kindness, and if you don't have something that you can express in a tactful way, then don't say it! i guess that is how i feel...

information is here to be shared...if you don't agree with something that is okay. but if we post in ways that are hostile to a person we don't necessarily agree with, we only make people more fearful of posting and lose the openess and positive flow of energyon this forum. Most importantly, people may end up withholding information that could potentially be helpful to someone else.

these boards are often on of the only safe places some folks have to go. it breaks my heart when something shatters that trust or support. (i went to a college that had a foundation in the Honor Code...meaning self-scheduled finals, take home tests, leaving your backpacks lying around, dorm rooms unlocked...etc...so...i try to use that system here...never betraying another member of the forum!)

you and michelle are amazing in your efforts to creat a community of members who support and hold one another up through our struggles with dysautonomia...and for that i commend you. you have created an amazing, warm setting that has made me feel very safe. and a group of members who amaze me every day...thank you for giving us this gift of community!

thanks again nina for your post.

emily

p.s. i hope this even makes a bit of sense...my brain fog is soooo bad during these flare ups i am having! eek!