Your privacy

[JSGeare]

So many people have expressed to me their concern about their privacy and personal security on forums in general and at Medhelp in particular, I have been inspired to write a long overdue journal entry about the subject. Some readers will say, "OMG!" And some will say, "Who cares?" depending on your experience and expectations. And not a few have expressed their anger and disillusionment with what they regard as an undisclosed and improper deployment of the material they post and such informration about themselves as they share.

I'm not attempting to support any particular view, but I AM making an effort to explain how and why things work as they do, here and really almost everywhere on the 'net. Here is where you will find the Journal Entry:

http://www.medhelp.org/user_journals/index/366811

or just go to my profile, click the journal entry tab, and read, "Medhelp Privacy -NOT."

As you will see, while Medhelp privacy is the subject for obvious reasons, the information has virtually universal application, exactly as I have reported in the journal, and in no way is intended to villify or unfairly characterize Medhelp. I will be happy to receive your comments, additions and corrections.

-JSGeare

[barfer]

I urge everyone to read this.  It is a real eye opener and important information especially for people who have panic/anxiety issues.  Do you want all your personal information out there?  This also, shows you how important it is to use a "forum name" rather than your real name.  Even with this said, some people have a definite style of writing and because of that, can be recognized easily.  I don't know what the alternatives should be for those of us with panic issues because this certainly doesn't make me feel safe or anxiety free.  This is a forum where one should be able to let their hair down and say exactly how they feel in a safe environment where they won't be judged.  With the whole world out there watch, how can we do that?

[JSGeare]

It is hard to express one's self honestly and completely when you don't know who is looking. That said, if you are aware that anyone COULD be looking, you learn, sooner or later, to keep the very personal material close to your chest, disclosing ONLY to those you trust and only in conditions which assure your privacy -such as private emails, phone calls, etc. In fact, this is what some of the anxiety folks do: they've made the connections they trust -and pursue the relationships elsewhere.

Medhelp, in fact, does not allow personally identifying info on any forum. Put your phone number (or MY phone number) in a post, and the system will either replace it with other characters or else a mod may delete the material. The rule doesn't apply in other places on MH and that is part of the problem: the fact that it does NOT apply does not mean the information is protected, necessarily, even though it may seem to be that way.

So -be careful here as you would be in any place where you don't know everybody.

[CaliGirl48]

I hate that you posted all of this. Like I needed one more thing to panic about.

I love you dearly, but I hate this post.

[sumihari]

I think this is a good post. I often felt very uncomfortable when I saw photos of some in their profile . Why have a nickname when you want the whole world to see you, unless
of course you don't care or it isn't a real photo. Why advertise to everyone that this person in this photo (some have family members as well) is suffering from all these problems. I think the forum should forbid photos to ensure more privacy . This is just my thoughts .

Thanks JS for looking out for us.

Sumi

[barfer]

We live in a nasty world and no matter what forum or transaction you do on the Internet, if someone wants the information badly enough and they have the expertise to access it, they will.  It is a reality, an unfortunate one, but a reality non the less.  We also have to remember that MedHelp is a business.  If we were on a private forum instead of an open forum, we could at least be more protected from this type of thing happening.  I Googled Barfer Anxiety and found all sorts of stuff I had written in postings.  I have since removed all that I can from my profile page, but every time you write a post or answer a post, you take the chance that it will end up on Google. With this being an anxiety forum, that does create a lot of stress for those of us who would prefer to keep it private among other suffers of this disorder.  I don't think this is such a big issue for most of the other MedHelp forums, but because ours is a mental health issue, that in itself, shows that there is still a stigma attached to it even in our own community.  

[JSGeare]

I assure you the intent is not to make anyone panic or freak out. I'm simply describing what's "under the hood" as it were. Medhelp is by no means up to any foul play, here, or, if they are, its the same foul play as anyone else with an enormous investment in a website deploys to keep the operation afloat. And even though some of the information may have been news to any of you, you must also understand that it has been this way for a long time: here at MH and in many other commercial operations. And we also have to ask if the value we receive is a fair exchange for the value we give. It must be, because people are still coming and participating.

Google is pretty fast, pretty effective. If you search for "medhelp privacy" guess what's at the top?

Another interesting question is, "If you knew about all this when you joined, would you have done anything differently?" Would you NOT join? Join, but hold personal info a little closer? Keep pictures of your kids off the site? I would have done nothing differently, myself. So what if some stranger knows what I look like, knows I draw odd-ball bean pictures, play with trains and write a lot of stuff. What are they going to do? Come steal some beans? Sell me life insurance? Make me talk about the Bible? Hardly different then what was going on before the 'net was even around.

Remember, what's good for the goose is good for the gander. The very same googling that lets people see my underware ALSO reveals Medhelp's agenda. When they advertised for a software wizard, they described themselves as a social networking site -I don't remember anything about seeing "finding cures together," the slogan projected to the users. Does this mean they speak with a forked tongue? Probably not -the audience in this case wasn't us -it was a job applicant. And that same googling also reveals that Medhelp is anxious (fancy that) about the challenges of handling huge volumes of data and thousands of interactions quickly and efficiently. They never told us THAT, either, but I'm glad they're working on it.

And this brings us back to the users. How many of you have actually read, word-for-word, the Terms of Use? (Here, or on Yahoo or anywhere). Few, I would imagine. How many have read them since they saw my journal entry or read this post? My point is that, in the end, WE are the ones with the primary responsibility for our own safety and sense of security. While I will grant that social web sites should do MORE to explain the risks and exposures, I can't in good conscience then argue that WE are thereby relieved of looking out for ourselves.

It is just my personal opinion, but I believe that MH and all similar operations should do more to disclose how they operate and what the potential risks are. It should be done right up front and with frequent reminders. Far as I'm concerned, I'd like to see a forum called, "How Medhelp Works" in which the Medhelp folks explain what they do to make this puppy a commercial success, how they pursue bad actors, how they decide what topics to add, what the Terms of Use really mean, etc. I see no problem with transparency and openess. Do you?

Barfer mentions a "private" forum. This is easy enough to do -just set up a free Yahoo group and make it "private." While a search engine may show that the group exists (and probably will NOT show that) it won't get anyone in the front door. And there are also free blog and forum sites where the users -not the management- set the rules. But what the heck -there are nearly 500 panic related groups on Yahoo right now, some with over 1000 members. Check 'em out. But those are populated by people who are strangers to us; maybe what we need is a MH anxiety "club room," where we already know who is who. It's a thought.

To summarize: you are no worse off NOW then you were BEFORE, knowing what you now know. So, if you were OK before, you are probably OK now. And what you should take from this is a glimpse at the way the web site social network business operates; we look at MH because we know MH -but it is similar everywhere and in all honesty I don't see any particular red flags on MH. The bottom line: be aware.

[CaliGirl48]

I can see your underwear on google?

[Heather3418]

It's not a pretty picture....LOL

Heather

[JSGeare]

It STARTS.

[Heather3418]

With YOU my love...it never ends....LOL

Come on Caligirl...you MUST get in on this one...Hee Hee

Hugs,
Heather

[nursegirl6572]

Bikinis or Briefs?

:0)

I DO actually have a worthy non-undies related comment to make in a minute....but first I must finish my Reese Pieces.  ;0)  BRB

[barfer]

For goodness sakes JS, keep your pants on.  I can see the full moon all the way up here in Canada!

[Heather3418]

Cali-Bikini's or brief's?  Interesting question.  Should I tell or should I keep my mouth shut?  Inquiring minds may want to know...but hence, I must remain silent, so as not to gross anyone out.  After all this post is about privacy right?  I forget!

Barfer-now as far as the "moon."  It is one cute little moom on this end. (pardon the pun...NOT!)

ttyl girls!
Heather

[Heather3418]

Hand over some Reese's Pieces or risk being harmed....

[nursegirl6572]

I'm not cali....although I would be honored if I were!  LOL

:0)

[JSGeare]

Myrtle and Horace, in their 80's, went to the doctor because Horace was due for his annual physical. After the exam, the doctor said, "OK, Horace, I need just three more things to complete the picture." And handed Horace a number of items. "What's all this?" croaked Horace, weakly, as he juggled the 3 things the doctor handed him.

"OK," said the doctor. "The match book thing has a little scraper on the inside for collecting a sample of your stool. The little bottle is for a urine sample, and the test tube with the rubber stopper is for a semen sample. Collect all that and bring it back in. We'll analyze it here, and I can give you the go-ahead for your next 80 years!" the doctor exclaimed, smiling broadly.

"But, but ... " Horace stammered, "I don't know how I'm going to; I mean why do we need to, I mean, isn't there some other-"

"Oh, for heaven's sake, Horace!" cried Myrtle. "Stop being such a baby. Just give the doctor your underwear and let's go home already."

[barfer]

Too much information!  lol

[barfer]

You just couldn't leave it alone could you!   Again, too much information! lol

[CaliGirl48]

Ok my guess to the boxer briefs question....


commando??? I would imagine at your age the tedious job of putting underwear on every morning would be a pain in the *** (no pun intended lol)

I'm not entirely sure I want the answer to this one lol  :o

(thanks nurse, you're such a sweetie)

[CaliGirl48]

And about the underwear story...

....gag me with a stretch limousine!

[JSGeare]

How can I put this delicately? How can I explain the means by which I have over-come the tedium, the agony, the insurmountable task of stepping into my ... my ... the thing we are talking about, here. How is it, you ask and wonder in perplexed and terrified fascination, that a man who is so old that most people his age have been dead for 20 years; how is it that this man assumes such a posture as to predispose himself for the modesty required in case his outwear should depart from him in some freak of nature, some unforseen and dark phenomenon? How, indeed?

I know...

Think ... think ...Yes, Sistine Chapel! That's it! the Sistine Chapel! The shining, penultimate example of Renaissance Art.

Does this reference seem obscure, strange, peculiar, disconnected -the work of a mad man? Bear with me (so to speak).

Who painted the Sistine Chapel ceiling? Michelangelo, that's who! And HOW did he do it? He did it by lying on his back on a platform at the top of a wobbly scaffold, that's how he did it. And he did not come down until he was finished.

That's right! He was up there for weeks, months! Food was sent up by means of a bucket, and forever memorialized by the expression "lunch bucket," so widely in use to this very day. And he sent the bucket back down to his waiting attendants, who carried off the refuse and detritus he had placed therein, the very same which we all are given to create even now.

Up there weeks, months, I say! No suitcase, no shower, no complimentary bars of soap or shampoo, no internet connection, no bonus points, NOTHING! And, no change of clothing. The raimant which enfolded his body when he ascended the scaffold for the very first time was exactly the same as that which had, quite literally, become a part of his flesh when he made his descent months later, and walked off to pick up his check.

Knowing this story of Michelangelo may help you comprehend how it is that I have for so long now managed to overcome the physical obstacles of a worn, tattered and wretched body and mind when the same are confronted with the insuperable challenge of pulling the innermost garment upon my quaking and frail body, my exhausted and piteous frame. How like Michelangelo -am I.

Hope that helps.

[barfer]

How do you come up with this sh!t?  You never cease to amaze me!  

Heather, I don't know if you are a really lucky lady to have Scott as a partner or a really crazy lady to have a him as a partner.  One thing's for sure, it couldn't possibly be dull around your place!

[Heather3418]

It certainly isn't dull....That's what happens when you live with someone who thinks he was a Comedian AND Sigmund Freud in a previous life. Geesshhhh!  

[JSGeare]

PREVIOUS life?

I deg to biffer.