Tag Archives: hypochondriacs

The Struggle for Health: Battleground or Middle Ground?

I talk to a lot of people who are in contact with the healthcare system – either as patients or as providers.  I talk to them on the van, in waiting rooms, during tests, and so on.   And I feel sometimes as if I am in the middle of a huge conflict where, increasingly, there are two very stubborn sides, both of whom think they are right.  (I won’t call it ‘war’, as that minimizes actual war and the horror that comes with it.)

On one side you have:

~ cyberchondriacs/hypochondriacs, who are clinically known as people with somatic symptom disorder (“Somatic Symptom Disorder Fact Sheet”, American Psychiatric Publishing, 2013),

~ anti-conventional medicine activists (all doctors are wrong because we have a profit-based healthcare system),

~ ‘alternative medicine’ practitioners (this includes those who do chiropractic and homeopathic so-called treatments),

~ anti-vaxxers (these people’s ignorance puts everyone at risk),

~ con artists,

~ anti-education ‘experts’ – this is my name for people who do not have degrees in anything so they have a disdain *cough jealousy cough* for those who do and they claim they have figured out some medical mystery all by themselves using unconventional means (read that as, “not using common sense or the scientific method”),

~ people who, usually due to a personality disorder, just like to stir shit up and upset people by taking ridiculous positions on all things medical,

and on and on.  You can probably think of others.  So, that’s one side.

On the other side we have:

~ doctors and nurses,

~ insurance companies,

~ pharmaceutical companies,

~ hospitals and other institutions,

~ healthcare ‘systems’ (a network of hospitals or clinics)

~ the CDC and the WHO etc,

~ government agencies such as the National Institute of Health,

~ “pro-medicine advocates” such as the National Alliance for the Mentally Ill (“just take your meds and everything will be a-ok” – if you can’t tell, I don’t like them),

and others that probably come to your mind right now.

Then, stuck in the middle, you have the patients.  The regular, med-compliant, majority of patients who generally trust the medical profession to provide decent healthcare.  After all, doctors and nurses went to school to learn how to diagnose and treat illnesses.  It’s normal and reasonable to expect that they know what they’re doing.

Most people get their checkups and are fine.  But at some point, many patients will find they have ‘something’ that needs fixing, in some form.  They rely on their doctors to help them.  They are ill, and not in a position where they can advocate for themselves, nor should they have to.  They are at the mercy of the medical profession, and I think a lot of times that works out well – the doctor knows what’s wrong, treats it, and everyone’s happy again.  Or, at least, better.

That’s how it should be.

Then there are patients like me, who are sick and unable to get well, because no one knows what’s wrong.  The tests are not helpful, and the problem persists as a chronic condition of…well, something unknown.   The primary care doctor is stumped.  The specialists send the patient back with a note indicating that, whatever the patient has, it’s nothing in their specialty.

Back to square one.

And that’s when the struggle begins.

When patients are ill and no one can figure out what’s wrong, they end up in the middle of a battle between conventional medicine and “everyone else”.  And when someone is ill, it’s hard to get up the strength to stand up for yourself and attempt to become a ‘partner’ in your own healthcare.

There is a trend here, of doctors wanting patients to be more proactive and vocal in their role as patient, more of a partner in a treatment team, actually.  I think that’s good, as long as the patient realizes that he/she does not know as much as the doctor does (it would be scary if the doctor didn’t know more than the patient, after years of medical school!), and also as long as the doctor is aware of how vulnerable and scared the patient is (and treats him/her kindly and with respect).

But our healthcare system, and American attitudes towards medicine (and I can only comment on American stuff), both have big problems.  In my opinion, the overarching contradiction, from which most of the problems stem, is “Patient vs. Profit”.  Then there are all the contributing factors, such as stoicism, cynicism, elitism in all its forms, and the right to express oneself (free speech, that term so often bandied about by Americans) – and the magnification of all that by the internet.

I have seen the problems our healthcare system has, and have blogged about them, and will continue to blog about them.  On any given day you can find a story about how the healthcare system has failed patients in some way, sometimes killing them.  If you remove the few incidences that are due to human error (errors made in spite of the best intentions and care), it always comes down to money.  I am not going to address that today.

I just want to talk about people, regular people who are lost in the quest to find out what in hell is wrong with them.

I have searched and I cannot find any statistics about how many Americans are sick but cannot find a diagnosis for what ails them.  My thought is that they either just give up, get better on their own, or someone convinces them it’s “all in their heads”.  So, naturally, there would not be a whole lot of reporting on this.

So I don’t really have a handle on how prevalent this problem really is.  And “anecdotal evidence”, found widely on the internet, is often a product of people who take the anti-medicine stance.  It’s biased.

And one side of this topic – patients who cannot find a diagnosis – is, for lack of a better term, “anti-medicine”.  There are lots of problems with anti-medicine activism.  I have seen the damage caused by quackery, by people with untreated mental illness who play the role of activist, and by people who comprise groups that are on the fringe of rational thought – all of whom cause harm to patients who are seeking to understand and deal with an illness for which they cannot find treatment.

The harm is to credibility, mostly, though in some cases it, too, can result in death – from treatment delays caused by reliance on pseudoscientific “cures”.  And it’s too simplistic to categorize everyone who is anti-medicine as mentally ill, because there are some intelligent, relatively stable folks out there who, in this case, are just plain wrong.  They either misunderstand or misinterpret science, or they know someone (perhaps themselves, even) who was ‘cured’ using unconventional means.

Be that as it may, they cause just as much harm as, for example, the pharmaceutical company that releases a drug that they know isn’t safe.  The results are similar, they just come from different points of view and/or different motives (sometimes…though there is profit in alternative medicine, too).  Similar economic classes, though, and I won’t go there today.

I did, however, find statistics on hypochondriasis.  According to the most recent stats I could find, the prevalence in the US is anywhere from 4-9% (Carson RC, Mineka S, Butcher JN (eds.), Abnormal Psychology and Modern Life (11th edition), Boston: Allyn and Bacon, 2000).

They are a very vocal group.  I would put them in the ‘untreated mentally ill’ category of anti-medicine activism.   My guess is, if you add these folks to the other categories of anti-medicine activists, including (as I do) chiropractors, maybe the whole bunch of them would be close to 15%.  But I can’t say for sure, because I don’t know.

Further clouding this issue is the report by the National Institutes of Health Pharmacy and Therapeutics Journal, stating that “nearly 40% of adults in the US use some form of complementary and alternative medicine therapy, including dietary supplements.” (“Current Issues Regarding Complementary and Alternative Medicine (CAM) in the United States, Part 1: The Widespread Use of CAM and the Need for Better-Informed Health Care Professionals to Provide Patient Counseling”, C Lee Ventola, P.T. 2010 Aug; 35(8): 461-468).

The bolding of the phrase “including dietary supplements” is mine, because I think this is important.  This article basically makes no distinction between vitamins (which appear to have some health benefits in many cases), meditation (which has limited benefits for relaxation etc), and homeopathic treatment/Ayurvedic/Chinese folk medicine (which are all complete nonsense).  While it states that more people use supplements than homeopathy, it’s not clear at all which supplements they are, and so on.

So it’s really not clear at all what percentage of Americans choose quackery as their ‘go-to’ strategy when they become ill.  So, let’s go with the high end of percentage of hypochondriacs (9%), add the 8% of adults who go to chiropractors (Ibid.), and so far that’s 17%.

If you add in all the other misc quackery, let’s be conservative and put that at 1%, ok?  So, minimally, we have 18% of adults who do not, in some form or another, trust conventional medicine.

And a lot of them, particularly the hypochondriacs, are very vocal in their mistrust.  Since most of these people will, at some point or another, become patients, there’s a decent chance that your doctor has run into at least one during his/her practice.  Certainly emergency room personnel have, as any of them will gladly tell you if you ask.

So when someone comes along who actually does have an illness, and the tests do not show anything amiss, it’s understandable why many doctors would refer the patient to a psychiatrist, or advise a lifestyle change that includes diet and exercise.  Some doctors, in their frustration, merely attribute the problem to aging.

While I think it’s reasonable to, say, advise a dietary change to someone who has diabetes, it’s not necessarily appropriate for someone who is exhibiting non-diet-related symptoms (for example, ‘fever of unknown origin’, which is, according to Dr. Wonderful, one of the most vexing symptoms to confront a physician).  Yet, one gets the feeling that, when a doctor doesn’t know what’s wrong, “change your diet” is the default when dealing with someone who also happens to be overweight.

The response, “it’s age” is such a cop-out I am not even going to comment.  Suffice to say, I have heard people complain that this is their doctor’s explanation/excuse for everything, as if being older means you just have to accept whatever’s wrong with you and “live with it.”

And what is a patient to do when the doctor, frustrated by the inability to come up with a diagnosis, then decides the patient is either faking or is a hypochondriac?  Some trust their doctors and toddle off with their referral to a psychiatrist, who then will probably prescribe medication for anxiety and depression – as most people with chronic illnesses are vulnerable to both those mental illnesses.

Some will reject this idea, and go find another doctor.  And another, until someone finally figures out what’s wrong, or the patient runs out of money/time/energy.

Some will reject this idea, and give up, reasoning that, since no one believes them anyway, why waste the time and energy?  “They’ll figure it out when I either die from this, or get so sick I end up in the hospital and they will HAVE to figure it out.”  That is a common reaction.

And if the symptoms persist?  There’s the problem.

Where is the middle ground for these patients?  Disappointed by their doctors, they search for the answers themselves.  And then, disgusted by the pseudoscience, hype, lies, and attempts at being ripped off by the alternative medicine crowd, they wonder where to turn to next.

They are alone, in the middle of two sides which are so limited (each in their own way) that the patient has completely run out of viable options and has nowhere to turn.

And they are still sick.

I don’t have any answers.  Perhaps someone will read this and think of one or two.

Today’s weirdness comes from The Daily Beast, and it’s a doozey!  “Bin Laden’s Minions Posed as Women”, The Daily Beast website, 2/18/2015.  There is a trial going on in Brooklyn that accuses a man of conspiracy to bomb several sites as part of an Al Queda plot.  It would be funny if it weren’t so horrible.  Just goes to show the lengths terrorists will go to, to engage in their heinous activities.

On a lighter note, I found this website: Shame Your Pet.  This link has pics of cats, but there are pics of dogs, too, on this site.  So now you have your puppy and kitty cuteness for the week!

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The Empowerment of Cyberchondriacs by Health Forums

This is one of my latest pet peeves: pulling up a health forum to look for information about a condition, local groups or clinics, or tips on lifestyle changes that can improve someone’s health (a good example of this would be losing weight to help control blood pressure) – only to find page after page of angry, hysterical, write-in-all-caps posts that don’t do anything but get the OP (original poster) a lot of attention and sympathy.

In looking at the other posts an OP has written – and there are usually a whole lot of them, each one posted on several different places on the forum – it becomes evident that most likely there is nothing at all wrong with them.

Welcome to the world of cyberchondriacs!

Cyberchondriacs are folks who spend hours on the internet looking up symptoms and
convincing themselves they have one or more diseases. Once they have decided on an illness, they haunt the various online forums to: whine about how ill they feel, bitch about the (many)
doctors they have seen who insist there is nothing wrong with them, yell (in caps) about family and friends who have been mean to them by not listening to them or ‘being there’ for them when they are in the throes of (pick a disease), or ask for health advice.

I should qualify that – ask for ‘alternative health advice’, because “the medical profession wants people to stay sick” and the only people who listen to the cyberchondriacs (and gladly take their money) are the many hucksters selling cures online.

It’s often easy to spot the cyberchondriacs if you peruse the post titles (“Help! Someone please help me!” – I promise you that is a direct quote), but oftentimes they will hijack a perfectly good thread in order to get the attention they so desperately seek. There is one forum I have found that is so rife with garbage like that, that if I were a member of the foundation that runs the forum I would be really embarrassed.

It’s not a surprise to me that hypochondriacs (or as it is now politically correct to say, “those with illness anxiety disorder”) have flooded the internet with wild abandon. After all, they have a built-in audience of possibly millions of people who can meet their need for attention, 24 hours a day. The reason I don’t think “illness anxiety disorder” is a correct name for this is that it leaves out the manipulative aspect of this behavior.

Hospital employees are all too familiar with “frequent flyers”, particularly those who routinely check themselves into psych wards, and I haven’t met anyone who works in this field who hasn’t faced the wrath of a hypochondriac when challenged. And by “challenged”, I mean everything from gently suggesting their doctor might be right to outright getting them discharged when it is clear they have no intention of complying with the rules (such as taking their meds). And by “wrath”, I mean everything from writing grievances to contacting CEOs to demand the healthcare worker be fired.

These people WILL get their attention OR ELSE! How much easier, though, to just log in and get your needs met whenever you feel like it?

It doesn’t matter if the illness is physical or mental, check any forum and you will usually find at least one small group of cyberchondriacs. They tend to bond quickly with others of their ilk, and routinely defend each other and make attempts to run people off who tell them to stick to the issues and/or go to the doctor.

They wear their ‘illness’ like a badge – that is, if they even are ill, which I suspect many are not – and complain frequently and loudly that no one understands them but the people on the forum.

Who does that, actually WANT to have a chronic illness? That’s a rhetorical question, of course.

It has been suggested that we really ought to feel sorry for people like that, but I disagree. They usually have personality disorders and are often out for blood – Goddess help you if you are their target! I don’t feel sorry for people who knowingly inject themselves into someone else’s life (or a forum), mess it all up, and then leave a trail of damage behind them.

They know what they’re doing, or they wouldn’t be so good at it.

And to do that on a forum where the majority of people are already suffering and do not need that kind of stress (because it can aggravate the condition) is….is…..well, it’s just evil and there is no excuse for it.

You guys who know me are thinking, “Oh, I bet she shot her mouth off about something and got a group of people upset!” and you would be right. I had the audacity to write something in a journal (not in the open forum, mind you, because I do not impose my uhem strong opinions on others) on the forum I mentioned previously that has a glut of cyberchondriacs.

I had been watching as member after member was attacked and run off because they wouldn’t play the sympathy game. All I did was appeal to people to stop being cliquish and stop insulting others, and for the most part I got a good reaction to it. I won’t post it here because it is very long.

But I also had 2 people respond with such vitriol it was almost shocking – and I deleted both their posts. I added a note asking again that people keep their nasty comments to themselves or publish those on their own journal. I reiterated that I wrote this on my own journal and not in the forum so that if people found it upsetting – for whatever reason – they didn’t have to read it.

Why was it necessary for me to write that upsetting people by name-calling and passive-aggressive behavior aggravates the very condition people are there to get support for? That is, of course, also rhetorical, because it’s obvious these folks couldn’t care less about what effect their behavior has on others.

The experience didn’t run me off – y’all know me better than that – nor did it cause a major flare-up, tears, or yelling. Hey, that’s why I write rants like this, to get it off my chest in a healthy way. I did, however, set the privacy settings for that particular entry to “friends only”, because I just can’t be arsed checking my journal every day in order to delete stuff.

So…what’s the most annoying/oddest/head-scratchiing forum you’ve read lately?

This is the 2nd weird news item of the day, because I wrote 2 posts today, and it comes from the Pennlive website  http://www.pennlive.com/

It’s a story about 2 Huntingdon County women (that’s not too far from Hollidaysburg) who got into a fight and started attacking each other with deer heads! Of course, the deer heads were mounted and not attached to deer bodies (wouldn’t that have been something if they had been though!), and both were arrested. One sustained a slight injury from an antler heh.

This kind of thing is why I will always refer to Central PA as “Mayberry on acid.”
Here’s the link:
http://www.pennlive.com/midstate/index.ssf/2014/08/women_attacked_each_other_with.html

2nd movie recommendation of the week: If you like psychological thrillers that do NOT contain the usual gore and hackneyed plots, check out a film called “Knife Edge” (2009) starring Hugh Bonneville and Natalie Pressman. It’s a good story with some twists, and it will keep you on the edge of your seat. It’s available on Amazon and Hulu.