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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4 thoughts on “The Struggle for Health: Battleground or Middle Ground?

  1. charlies5169

    Based on my own experiences, I’m afraid I have to take issue with you lumping chiropractic in with the anti-vaxers and other con artists. No doubt there are plenty of charlatans passing themselves off as chiropractors, and plenty of incompetent ones as well. But, again, this is based on my first hand experience, no statistics or anecdotes, just what really happened.

    Back when I was running marathons on a regular basis, I made the mistake one year of overtraining… seriously overtraining ( a regular program of 750 sit-ups at a time is not recommended). The result was that I had developed severe lower back pain.. so much that it was excruciating to walk, even more so to sit. I had to lie on my back on the floor for any relief, and that relief was relative. I couldn’t sleep from the pain, so I was tired and irritable all the time. Lots of fun to be around.

    Naturally, I went to the doctor, and the first thing he told me was basically my running days were over, followed by a list of things I couldn’t do. (Anyone who knows me knows that that is pretty much a death sentence.) He then told me I needed back surgery, and prescribed muscle relaxers and painkillers. When I told him that was “unacceptable”, he ignored me. Didn’t even acknowledge that he heard me.

    Before I filled the prescriptions or made an appointment to see the surgeon, Dorene suggested I visit a friend of hers who was a chiropractor. At that point, I had nothing to lose.

    And I admit, I was extremely skeptical. I thought it was a racket, blah blah. (Kudos to the AMA for their publicity efforts.)

    The first thing the chiropractor told me straight out, was that if he didn’t think his treatments were going to be effective, he would tell me, rather than go through a whole series of treatments.

    Then he said, let’s get you back to doing what you want to do. Not, you CAN’T do this or that, but you CAN do it.

    He also said, it was not going to be fixed overnight and to give it a chance.

    Within a few days after the first treatment, the pain had subsided enough that I could sleep. Within two weeks of two to three treatments a week, I was walking on a paved track, and by the sixth or seventh week, I was starting to run again.

    So, by the next marathon season, I was back to where I was before the injury. (For the record, I was running 3:08 to 3:12 marathons in those years.)

    Since then, I’ve been back to deal with other injuries/pain. And for the most part, it has been effective without any drugs or surgery. In fact, my feelings these days are “if there’s no blood or nothing needs to be sewed up”, I try the chiropractor first.

    Since then, I’ve also changed regular doctors, and the current one I have is a marathoner himself, so he is a lot more sympathetic. And although he doesn’t necessarily endorse me visiting a chiropractor, he doesn’t discourage me or say anything disparaging about it. And he is very reticent himself, to write prescriptions for relative minor problems.

    As far as my running days being over… twenty some years later (at age 63!) I am still running almost 50 miles a week, including runs of 18 miles or so EVERY SUNDAY. That would probably never happen had I had back surgery, which is rarely effective to begin with.

    I have no statistics or studies to back up anything about the effectiveness of chiropractic in the general public. And I can’t speak for any of the other “alternative” medicines, as I have not had much experience with them. As I said, this is strictly anecdotal. However, I don’t see it as any less quackery than pumping a patient full of pills and cutting on them for anything other than a last resort.

    Other than that, which is a minor issue really, I once again enjoyed the post.

    Like

    Reply
    1. Gary Ammons

      I have worked in the medical field for close to 20 years. I help educate Doctor’s now by recording lectures and filming conferences and before that I was the Chief Tech for some dialysis centers and also was an EMT. Now working for one of the largest Health systems in the south I have access to good medical care. However I have run into the same problem of being ill in some way and when I go to have tests they say we don’t see anything wrong. I find this terribly disturbing. I have no desire to see a doctor unless there is profusive blood loss or bone showing. I have had back and shoulder problems that were relieved by 1) massive doses of narcotics which cure nothing but who cares, and 2) by a friend and musician I played with who is a chiropractor. One example, I started seeing double out of one eye. I had all types of tests including an MRI. They found no reason for this happening. The first suspicion would be a TIA. Nope no stroke. This went on and on until it went away by itself after I paid multiple co-pays for tests and “Specialist” visits. This is only one example. I can imagine the frustration of someone on a fixed and limited income.
      I was finally starting to think that it was my fault. It isn’t. It is a rampant problem that physicians have fallen into a rut of letting tests do their thinking. They rarely get any understanding of the individual patient and the ill become treated with the same or less repect and consideration given to a lab rat. I feel like I should become a Shaman as I have more medical knowledge in my head as well as alternative medicines. It could be my new calling. This situation is far more common than people would think. We are brought up thinking that you go to the Doctor and everything will be fine. Not true. Once you go into the hospital you are now exposed to flesh eating viruses, antibiotic resistant bugs, TB, and if you are elderly and intubated you have about an 80% chance of getting ARDS and if you do there is a 90% chance that you will die. Your health and your medical well being is your responsibility. Don’t become a statistic.

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      1. Victoria Post author

        Your comment is well-thought-out and definitely appreciated!

        Heck, let me know if you do actually become a Shaman – I’ll be right there. It would be a welcome change to see someone who really does have a patient’s interests at heart. I would work alongside you, for free.

        I have suspended all tests for now because: 1. I would have to go to Pittsburgh, and that’s not financially possible, 2. the reasons you gave regarding hospitals – I feel as if I am taking a huge risk every time I walk into one, 3. I am just tired of being poked and prodded, and 4. they have ruled out (most) cancers, so I am a bit less worried.

        You are spot-on about doctors being too reliant on tests. The medical system that has been in place for years will not improve just because of the Affordable Care Act – that’s just not enough. Our system still, for the most part, pays on the basis of efficiency and not on the patient improving. Even some of the latest attempts at “improving outcomes” only make things worse by arbitrarily punishing hospitals for JCAHO violations (not that they shouldn’t do that, just that this cannot be the gold standard for care), or “bad customer service” scores.

        What a mess. It almost makes me want to go back to school and get a degree in public health. But I imagine that’s not the place for troublemakers.

        Like

  2. Victoria Post author

    I am so glad you didn’t listen to that doctor and get back surgery, or even worse – quit running! That is a terrific anecdote and I liked reading it.

    Did you ever find out what the problem with your back was?

    And did you EVER do 750 sit-ups at one time again?? (I hope not lol)

    Liked by 1 person

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