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Medhelp Privacy -NOT

Jul 07, 2008 - 18 comments

I've received so many questions about privacy on and in Medhelp that I believe the time has come to disclose as much about it as I know, or think I know.

The bottom line: very little -maybe NONE- of what we write on MH is private. By design, MH is a very open community. The only exceptions to this of which I am immediately aware are photos and journal entries which may be marked as visible to only you or only your friends (or the default: "everyone"). PM's are also, by nature, "private."

But under normal circumstances, everything else can be seen by everyone. Someone clicks on your name (appearing on a post or a comment, for example, or found by searching) and that person sees your personal profile page. And there, they see everything YOU see, with the exception of private pictures and journals and your PM's. Of course, they can't CHANGE or delete anything -but they can see it. Thus, someone who is trolling from one forum to another may browse around for someone who might be responsive to something for sale, a referral to a bogus web site, or perhaps a personal appeal of some nature.

Don't take too much comfort from the idea that your PM's, (and photos and journals marked for "friends eyes only") are truly "private." YES, they ARE private as long as they stay in the form of PM's, private photos or private journals. But the CONTENT can very easily become public. How? Simple. Let's say that I'm your friend, and you have some journal entries that are visible only to friends. I go to one of those, copy the material, then paste it into a post, a PM, my own public journal or an internet blog on some other site. Yes, the journal ITSELF is still private -but the content is now "out there." Same with PM's. Same with photos.

But your friends wouldn't do that would they? Depends on the friend. Some people make it their business to become a friend because they have a special agenda. And some friends have a genuine motive -but you end becoming angry with you for some reason. And let's face it, making friends on MH is about the easiest thing to do on the site. I've got TONS of friends with whom I have never exchanged a word. I guess they're my friends, anyway.

We have the sense that our own association with a particular community or groups of communities, be it Anxiety, Diabetes, of MS or whatever, somehow defines and isolates us from others who have different associations. What the devil is someone from "Relationships" doing here in "Cardiac?" In fact, the distinction is just that -entirely mental. Anyone from anywhere (even a nonmember of any forum, a complete outsider) can look at anything, anywhere, anytime. You might be surprised to find me in the sewing, fabric and notions department at Walmart. But there I am, looking for stuff for my model railroad. There's no "keep out" sign, no membership required. Same with the communities of MH.

This goes deeper. MH, being as popular as it is, and being as connected on the internet as it is (all those doctors and medical institutions) ranks very high in Google search results. It won't be long before this journal entry will appear on a Google search for something like "Privacy Medhelp." Want a wakeup call? Go to Google, and search for your handle and Medhelp. For example, I searched for:

JSGeare Medhelp

and HUNDREDS of citations came back Oddly, dozens of them (at least, dozens -I didn't check them all) actually did not refer to a MH page on which I had contributed anything at all. But many did. Does this make me famous? Or does this expose me to people who want to find folks like me -folks who perhaps face a medical challenge and might be responsive to some special offer of help? Of course it exposes me.

Try your own nicname (followed by Medhelp) and see what happens.

You might also try entering the term, Medhelp, and then some key words about disorders and conditions. Play around with it, and notice how easy it would be for any outsider to zero in on people posting on Medhelp. But of course, you must know to include the word "Medhelp" to make this happen.

Google and other search engines will report most anything appearing on Medhelp -EXCEPT for your PM's and photos or journals marked as "private." The reason for this is simple enough: Medhelp wants more members, and one way to get them is to have a big presence in the search engines. But there's a catch, here (for Medhelp): If you Google for a phrase which you know ALREADY appears in a post or journal on Medhelp, you will probably see the link to it in the top ten of Google's results. Try it for something you have actually posted yourself. The point is this: someone who searches for that exact phrase has ALREADY seen the material, or, in the case of asomeone who has NOT seen it, simply used the phrase by complete coincidence. But more general searches, such as "anxiety support groups" will NOT put Medhelp in the top citations. Medhelp, no doubt, wishes they did come to the top on such queries. So, for those of you who are alarmed that what you said will be found by Google may take some comfort from the fact that whomever is looking must search for EXACTLY what you said, word-for-word. The only people who would know EXACTLY what you said are those who already have seen what you said and the occasional coincidence.

Bear in mind that what Medhelp has to offer the members is not just the functionality of the web site, but the content provided by the OTHER members. If everything we say is kept hidden from public view or search engine queries, it is worthless -no one knows we exist. In a very real sense, each of us is a contributor to what Medhelp relies upon for its popularity, with both users and advertisers. We actually "build" the site. It can't possibly succeed as a commercial venture unless it is highly visible.

The same kind of cyber dumpster-diving used for info about members and their conditions may also be used to locate information about Medhelp ITSELF. The Medhelp software engineers recently advertised for some special help to whip up the trackers we've seen implemented recently. They placed an ad you can see here:

http://vitallogs.medhelp.org/blog/

If you read through the material, you will notice a link to one of the community members, provided to give the job applicant an idea of what a typical member of MH is like. Does that member know this has been done? Should he or she? For all I know, that member gave permission for the reference, or is an actual Medhelp staff member, or else is a creature of fiction, made up to represent a typical member. I don't know and I'm not going to ask anyone. No way they would choose ME as a typical member: an old guy who plays with trains and thinks about beans. Not going to happen.

But the link above is one way to get an inside look at what's going on in the Medhelp front office. How did I find it? Simple. I just Googled for "medhelp" (WITH the quote marks). It was the 5th citation from the top. That wasn't difficult, was it? That same search returned this interesting URL:

http://www.quantcast.com/medhelp.org

which will give you interesting statistics about the MH members. This is the stuff that MH "sells" to advertisers. How do they guess at our average annual income? Beats me. I never told them about the million bucks in gold bars I carry in my shoe.

My point is that your "privacy" while perhaps not directly or personally violated by any of the above examples, may not be quite as closely guarded as you at first imagined. We have a "sense" of privacy. But we don't have it in the same sense that the stuff hidden in a shoebox in the attic is "private." Not to worry: its that way all OVER the web. I don't care where you go, it takes money to run that place and the bucks come from advertisers who suffer under the delusion that the members will be persuaded to buy their stuff. And its that way wherever access to the media is free. Radio and TV advertisers spend a lot of money on US trying to figure out how much we have to spend on THEM. I'm covering this territory because several members have expressed to me their umbrage and sense of insecurity about their high visibility on MH and in Google and indeed, as a commodity in the Internet "numbers game." But if you imagine that you are somehow more anonymous on Yahoo or Hotmail or elsewhere -think again. You may have a perfectly valid complaint -but the violators are all around you.

While you may have some discomfort in comprehending the business side of the MH house -and your role as a commodity- the biggest problem in terms of direct privacy violation is sitting at your keyboard: YOU. ME. ALL of us. The BIG exposure is disclosure of our private emails, our phone numbers, our mail addresses and physical locations OR SUCH OTHER INFORMATION AS MAY LEAD TO THIS DATA. With few exceptions, NONE of us actually have known each other personally when we do this. Instead, we evaluate what we are told by others about themselves, and make an educated guess as to our personal safety in "connecting" with them. This is by no means accidental. Medhelp, in fact, calls itself a "social" networking site whose members are drawn together either by health conditions which they have, or in which they are interested. Sure, you show up here because you've got a condition. But, what makes you STAY here and come back again and again? The connections, the friendships ... the PEOPLE. But there are also others who show up and present themselves as trustworthy, decent folks -but who carry a special agenda. SAME AS LIFE.

Perhaps because I once made a living messing about with the web, I'm aware of this situation and have absolutely NO expectation that Medhelp should intrinsically be any "safer" or more private than any other site. And my personal approach to the whole privacy concern is to be very public about who I am and where I am. I don't show pictures of my home or myself because I imagine they are safe from the view of bad actors or just pure commercial interest, and neither should you or anybody else. In my case, I simply have nothing to hide, and really don't care who sees or learns about me. This kind of openess is also encouraging to folks who WANT to trust me -but are unsure. I'll give you everything you need to call the cops.

If you, however, need to be running in stealth mode, you should impart as little about yourself as possible and be wary of disclosures even if they are made "privately."

This brings us to the visibility of our PM's, private journals and private photos to Medhelp itself. Can they see that stuff? Of course they can see it -it is their system, after all! And if you take the time to read the Terms of Use (click the link below) you will see that what is says, in a nutshell, is this:

THIS IS OUR TOY. YOU CAN PLAY WITH IT IF YOU FOLLOW THE RULES, WHICH WE CAN MAKE UP AS WE GO ALONG, IF WE WANT. WE CAN USE ANYTHING YOU SAY FOR OUR OWN PURPOSES, JUST AS THOUGH WE SAID IT OURSELVES. IN FACT, WHATEVER YOU SAY FALLS UNDER OUR COPYRIGHT. IF WE DON'T LIKE WHAT YOU SAY OR DO, WE CAN MAKE YOU GO AWAY AND WE MIGHT EVEN CALL THE COPS. PLEASE TELL US IF ANYONE IS MISBEHAVING. WE WANT YOU TO FEEL SAFE AND SECURE BUT NO WAY WE CAN GUARANTEE IT.

Pretty much what all the web sites say.

If we assume that they are honorable folks at Medhelp, then we WANT them to be able to see our privates, as it were, in case people are doing bad stuff. Do they make a habit of looking, just for fun? Perhaps it has happened, but given the huge amount of material in the MH system it would seem a waste of time, and anyone who has that kind of time probably has TOO MUCH time on their hands. That leaves the technicians who run the equipment. Last I heard, Medhelp uses an outfit called "Rack Space" (www.rackspace.com) to host the web site - this is a company with a big connection to the Internet, who rents space and/or equipment to companies with web sites. The technicians may or may not have access to the Medhelp content and software controls, but it would not surprise me if they do. And it would not surprise me if one or two of the tech staff had "hacked" the Medhelp site just for fun and games. I cannot say this is true in this case, but I can say it is true in some cases because I have seen it. And so, while there may be a technical and even legal privacy violation, it is probably meaningless in terms of a threat to you. But be aware that it is a possible exposure.

While some of this may come as a revelation to you, it is important to understand that the situation with Medhelp is hardly any different than the situation at other forums or sites with a membership of some kind. But the reality of your "privacy" may be very different than what you thought it was. So, now that you know, be guided accordingly. Here, at Medhelp. And EVERYWHERE.

Laughter and Humor for Medicinal Use

Jul 05, 2008 - 4 comments

Laughter, humor, is not only good for recovery, one might argue that it is ESSENTIAL to it. In fact, I will argue that very point. The classic work on this is Norman Cousins' "Anatomy of an Illness" which is basically his report on how laughter literally saved his life. Google for that, and then see this:

http://en.wikipedia.org/wiki/Laughter

As part of my own recovery, I would meet a friend every Wednesday night at a particular restaurant, where we would dine together before going to our "Power Over Panic" support group -a self-help group which had no moderator or therapist in charge -just the members. At dinner, and later in the meeting, we would frequently remark on how ridiculous and at times comical our disorder was, in terms of our avoidance behaviors, what we were thinking in certain situations, etc. Most of the time, when any of us had a story to tell about something that happened since the last meeting, it was something that had a comical or humorous side no matter how terrible it was at the time. This is why, I think, that people at funerals are often seen -you guessed it -laughing!

(My Father was a very impressive guy -always made his mark, wherever he went. He was known and loved and respected by many. When he spoke, people listened. When his coffin -he was inside of it- was moved from the church to the hearse for the trip to burial, the young driver accidentally triggered the vehicle's theft alarm somehow. The car started whooping loudly; the pall bearers nearly collapsed, and everyone stood frozen while the driver fumbled to correct the problem. In a few moments, he stopped the noise. By this time, there were perhaps 100 people who were within view and earshot. At the very same moment in time ALL of us broke into uncontrollable laughter. So like my Dad to make a statement!)

Matter of fact, there are outbreaks of humor and laughter right here on the Anxiety Forum. Look at this thread: http://www.medhelp.org/posts/show/521606. About 100 comments which ranged from the dead-serious to knee-slapping slap-stick. Its a LONG one, so read it when you've got 30 minutes free.

There is more to this than just the "feel good" release of endorphins that comes of laughing out loud. Seriously. Fact is, that the mere perception that something is "funny" or humorous requires an act of consciousness that makes us, as humans, unique in the animal kingdom. There must be the ability and the volition to look at something in a different way than it is normally perceived -there must even be the ability to RECOGNIZE that something is or could be "different." That's your brain at work, and it is that very process that fuels our recovery -seeing ourselves in some way OTHER than the way we are. In the thread I mentioned above, it was Mr. Green, I think, who said that in Ireland, folks who are diagnosed as agoraphobic receive free travel passes on public transportation. That's hilarious! OK, well, you could say that it is because -well, you know why. Get it? free travel for people who are housebound....? You had to be there...

And so, if humor can give us a new and different and even joyful understanding of who we can BECOME, then it nhelps us tap into our own psychology, to actually bring it about. I can't count the number of times my psychiatrist and I broke down laughing over som of the ridiculous situations I caused for myself.

But let's move along here. I will share with you folks an "encounter" I had with a representative of the MH "front office," referring here to the psychiatric cases who run this place. This person, in an effort to draw more new members and increase participation among the "regulars," suggested various topics and subjects which the rep. was convinced would get a lot of positive attention. I won't go into the details, but the theory was that people will respond to this "fun game." Those were the words: "fun game." I couldn't make that up. Being open-minded and a team player (I was a CL at the time) I played along and tried out a few of the ideas. Crashed and burned.

Why?

I'll tell you why: for people with a disorder which may mostly be defined as the same kind of torture as being locked into a "fun house" at the carnival, depression, anxiety, panic and all the condiments that go along with it is NOT funny stuff. It's damn miserable, that's what it is. Humor, "fun games," therefore, can't be artificially manufactured by an outside source and expected to have much credibility. It would be like distributing comic strips to innocent people sitting on death row -makes no sense- the ultimate "bad joke."

But humor which spontaneously arises within the context of our own interactions? That's DIFFO. We create it, we see why it is funny, we share it with others who react the same way, we take joy and endorphins from it. And you can't "make it up." The whole basis of the laughter, the humor, the quirky point of view is the reality in which we actually live -it is valid, credible, REAL.

This is not to say that you can't deliberately USE outside sources for yourself. But you need to know where your "funny bone" is. Norman Cousins knew where his funny bone was, and he deliberately deployed Marx brothers comedy and other things that made him laugh to literally and actually save his own life. Read the story: Anatomy of an Illness. It is the real deal.

My funny bone was tickled by Gene Shephard, who wrote "In God We Trust, All Others Pay Cash," among other books. The book is a collection of various boyhood adventures, and his manner of describing them would push me over the edge. I would literally laugh until I cried. From a book! I have purchased this book perhaps 5 or 6 times, because I keep giving it away. But YOU may find it to be a crashing bore.

To conclude: yes the humor works, not just because of the feel good factor, but because of the exercise your brain gets in being different from the way it is accustomed to being. See yourself laughing -and see yourself out of this mess.

Anxiety -and EVERYTHING else

Jun 27, 2008 - 1 comments

Many questions on the forum speak to the relationship between anxiety and other symptoms or sensations which seem far removed: burning, itching, buzzing, aching, numbness -you name it! People want to know if these cause the anxiety or panic -or are caused BY the anxiety and panic.

And the answers are: yes, no, sometimes and maybe.

The human body and brain are complicated things. They are like large cities, with a lot going on at the same time. In the big city, if a fire three blocks away from your apartment breaks out, your water pressure may drop when the fire fighters tap into the hydrants and start pulling water from the system. What is the cause of your low water pressure? The fire department? Yes -they started taking water. Should we therefore get rid of the fire department? No, we need that water more for the fire than for your shower. So why did the FD take water? Because there was a fire. Should we therefore do somthing to prevent fires? Makes sense.

You get the picture: EVERYTHING is connected. And if your date asked you why you were so dirty, your explanation that fire prevention wasn't very good might make them question your sanity. Until you explained the chain of events.

The human body and brain are much more complex and sophisticated then the biggest city. And so, while it is tempting to say that burning ankles cause panic (or the other way around) it really is not that simple. There certainly is a possibility that we might be "anxious" ABOUT our burning ankles or buzzing sensation in our neck, but is that the same as having anxiety as a kind of independent presence all its own -no matter what else is going on? Probably not, but MAYBE.

Of course we, as individuals, do not walk around with the complete history of medical science in our heads, so we can't just refer to everything that has ever happened to anyone at any time. Our doctors don't have all that stuff in their heads either, and even if they did, they would find that much of it is contradictory or unsolved. But what medical science DOES have is time tested and frequently updated information and methods to sort through the symptoms we present. There mere fact that 2 patients in a row both present with burning ankles does not therefore mean that both have the same underlying condition. One may have an insect bite, the other may have circulatory problems, and BOTH or NEITHER or EITHER may have high anxiety. Any connection between the anxiety and physical burning may exist EITHER because there is some path through the nervous system and into the brain that triggers it, OR because the symptoms and anxiety present at the same time, so we think we see a connection and -in THINKING we see it, guess what? We actually CREATE it! Like I said, it gets complicated.

So, we here on the forum can't answer questions such as: "I have a buzzing sensation in my arms and shortness of breath. Is this anxiety?" Even if everyone here was a doctor, none could say for sure. You'd need an exam and some tests -maybe more. I don't mean that we can't actually respond to your question (matter of fact, we do respond). I simply mean we have no way to determine if anxiety is at work or not. We have neither the information nor the expertise to say for sure or to say what treatment might be appropriate.

Likewise, asking, "Has anyone ever had...?" will get you what you about would expect: Some have, some haven't, and some "sort of." That does not mean you do -or do NOT- have what everyone else has. It is just a poll. You should not regard the answers of others as the answer in YOUR case. That said, the benefit of asking (and answering) is the establishment of some familiarity with your situation -people know what you are talking about, and the treatments that worked for some might (MIGHT) work for you. It can help you decide your next steps. But it is not -and should be taken to be -a definitive answer.

Check my journal entitled, "Is is Possible? Could it Be?" for more.

Sweeping out the Garage

Jun 11, 2008 - 2 comments

A few weeks ago I performed the annual spring ritual of cleaning out my garage. Over the fall and winter months, leaves blow in, dust setttles, tools and construction material get disorganized, etc. Then, spring comes and the 2 garage doors can be left open to allow fresh air and light to come in. I park the cars outside, and set about restoring the premises. And as I did so this year, I was thinking about some of the people and questions on the anxiety forum, when I noticed what I was doing..,

And what I was doing was sweeping dirty water across the garage floor out to the driveway. That floor is reasonably flat and level, so sweeping out the water I spray to lift up the dirt and dust is not terribly difficult. At the same time, it is kind of a game. I start at the back of the garage, and shove water ahead of me with a pushbroom to the entrance, then onto the gravel drive. As I do so, a little tidal wave of water forms ahead of the broom, and water begins to flow off to the sides. There are a few low areas in the back, and water tebds to pool up in those. So there I go, back and forth, side to side, chasing down the water. After perhaps 20 minutes I get most of it out -and the floor starts to dry.

"How like dealing with panic and anxiety is this?" I thought to myself. Each time I sweep some water out, I count a victory. But the remaining water fills in behind me or puddles up on the side somewhere, and I go back to sweep it out -over and over. Victory, challenge, victory, challenge. At one point I realized that no matter how much I swept out, more water kept appearing. It was then that I noticed the hoze nozzle was not completely closed -a small amount of water was fizzing out the end, along the back wall. But it was enough to create a kind of "perpetual motion" machine in which I could never get the floor entirely swept -there would always be more water. The solution, of course, was to shut off the water supply! I did not notice the continuing supply of water until I had swept out enough to reveal the source.

And, "How like recovery is that?" I thought again. Sweeping out the accumulated water gave me evidence that I could, indeed, get ahead and make progress. But the big success came when I saw where the extra water was coming from, went to the source and shut off the supply. Now, I could sweep out the last little puddle -and walk away.

So, our individual victories and accomplishments are important because they tell us we can get ahead, life can be different -all cleaned up. They send us good news. At the same time, they may also reveal to us why we have the problem in the first place -or at least give us a clue. At some point, much as we take some satisfaction and encouragement from our victories, we also wish that we did not need to continue fighting all the time to get them; it is good to win a battle -but it is better not to even have a war. True "peace" of mind.

Can you think of any ways your life is like my sweeping story? Why not post your own similar insights below? I invite your thoughts.