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:
~ 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!