What the Heck are They Talking About: Neurological CFS: Should you take your Doctors Word for It?

As Alice in Wonderland once said, "words mean exactly what I want them to mean, nothing more and nothing less."

The fatigue part of Chronic Fatigue Syndrome is such a misleading term.

In fact, mere words seem quite inadequate when describing the exhaustion and post-exertional fatigue that accompany the very specific cluster of biologically diagnostic symptoms that define this catastrophic, nonpsychiatric, neurological disorder.

Listen very carefully and repeat after me, this disorder is not caused by psychiatric problems nor is it a dusty 1880s version of women's hysteria called neurasthenia. And with all due respect to Norman Vincent Peale, changing your attitude cannot cure you of this organic illness or any other including the heartbreak of psoriasis. Okay. Got it? Hold that thought.

As a result of this verbal inadequacy, what you say and what your doctor "hears" are not necessarily the same thing. The words tired and fatigue are little nats and noseeums to doctors. They just swat those words aside. They are considered "complaints" of a trivial nature.

So when asked about fatigue or tiredness, my stock reply is "profound, bone-crushing exhaustion." In fact, I am quite assertive about insisting that "my words" be written down verbatim.

I had to learn this the hard way.

My treating doc (aka Angel of Mercy) arranges for moi to see a neuropsychologist for testing to see why I'm having so many cognitive difficulties:

poor memory (caused by pathologically slow brain waves see squiggles), inability to remember names of common objects (anomia), going from immaculate spelling and grammar to a complete inability to spell anything that cannot be spelled phonetically, merrily mixing and matching homonyms in my writing (orthographic dysgraphia), as well as the inability to count money or do calculations (adult onset acalculia).

In other words: The usual suspects and extremely alarming to a person who makes their living as a wordsmith (except the acalulia and it is rumored that all journalists have alcalculia. LOL.) The alarm bell there was a stack of overdrawn bank notices.

Q:Neuropsychologist (aka Sir Donkey-Bottom): So, what are you having trouble with today?

A: Me: ... I also have profound bone-crushing exhaustion.

Sir DB nods wisely and then wrote in his report: decreased energy. As for the rest of the Sir DB debacle, "Another day my pretty, another day." It is a horror story meant for flickering firelight and upturned flashlights.

In the meantime, I ask you, how much further do you have to go to feel less energetic than profound, bone-crushing exhaustion!

I could laugh it off as general doctor stupidity and simply roll my eyes with the same panache as my teenagers, but in this case not only were the words knowingly substituted, but so was the entire meaning! As a patient, and as professional journalist who deals in accuracy, I find it highly offensive with a slight tilt toward malpractice.

What I discovered was that "decreased energy" is psycho lingo for symptoms of depression. Hmmm, not surprised are you? However, once again, I ask you, does "profound, bone-crushing exhaustion" sound like the words "decreased energy" to you or any other reasonable person? Are you aware of any dictionary that would define profound, bone-crushing exhaustion as decreased energy?

(Sinister musics plays softly in the background) Or, was my doctor ignoring my very specific description to suit his own pre-formed judgments and prejudices?
Maybe Sir DB is merely one of those self-absorbed people who, if they are not experiencing what you are experiencing, immediately and with utter conviction declare you a liar?

Hmmm...Kind of like just because a man doesn't have a uterus and can't see mine does that mean there is no such thing as a uterus? Or the man who asks, "How much can having a baby really hurt anyway? You are over-reacting!" Sorry guys, I can only relate from my personal experience and I am what I am.

Speculation aside, the end result was that Sir Donkey-Bottom knowingly substituted psycho lingo designed to create a false, unsubstantiated, psychiatric record with me in the starring role.

The result: I have been forced to go through numerous Psychiatric Consultive Examinations by SSDI drones for over four years now without receiving so much as a dime of compensation for the legally and objectively proven, neurological illness that disables me. Oh I am so sorry, I thought I might have sounded a tad irritated there for a second.

Now THAT is DEPRESSING! And given the current 2006 budget projections that will change to homeless if good 'ol American justice doesn't get a move on.

In my personal experience with Chronic Fatigue Syndrome and Fibromyalgia, psychiatrists and psychologists are the most likely to outright lie, to omit key evidence and to knowingly substitute psychiatric rheotoric having a completely different meaning from the words you used.

And it's okay for me to say this because some of my best friends are psychologists. No really, I'm not just saying that, one of them is even related to me. I swear I'm not a liar. Hey, where did you get that report from. I thought I shredded all those records. Hey, don't you dare go near Social Security with that!

Do words and their meanings really matter? They do when the substitution results in a fictitious psychiatric report. I don't believe British playwright William Shakespeare ever met Sir Donkey-Bottom because of the time warp factor, but if he had he might have quothe:

Good name in man and woman, dear my lord,

Is the immediate jewel of their souls:

      Who steals my purse steals trash; 'tis something, nothing;
      'Twas mine, 'tis his, and has been slave to thousands:
      But he that filches from me my good name
      Robs me of that which not enriches him
      And makes me poor indeed.

- William Shakespeare, Othello, Act III, Scene III; [Lago to Othello]

A rather poetic way of describing libel don't you think? For our libel laws are based in English Common law which gives each person the right to their "good name." Is your "good name" dependent on the words others use? Darn tootin'!

It is unfortunate that in the society we live in, people are marginalized when psychiatric allegations are made, but it is all too common. Patients can and do lose their "good name" to psychiatric stigma, true or false. It is a form of prejudice embedded in our "common wisdom." This goes along with the myth that if a doctor (preacher, law enforcement officer, rabbi etc) says it, it has to be true.

If there is a conflict between a doctor's word and that of the patient, the doctor is automatically accorded the status of "right," and the patient the status of "liar" in our society. Interesting that the person who cannot actually or personally verify your experiences because they don't have them, is considered the expert? Sorry folks, I'm not buying and you can just take that bridge model with you on your way out.

It isn't right, it isn't fair, it isn't necessarily legal or even logical, but it is a problem that exists in plain sight. But, most of us don't want to rock the boat. SHHH don't say a word.

Are there ways to combat damaging word choice? Can the damage be wiped away as if it never happened? You tell me.

Whether your goal is legal remedy or societal remedy here are some of the practices I have put into place.

1. I never see a new doctor without a witness no matter how nice they seem even if they are supposed to be on my side. Much better to be safe than sorry. Make sure you take someone you are comfortable enough with to take into the examination room with you.

If the doctor refuses to allow that, you might then examine whether the doctors refusal is a huge red road sign saying,

"RUN LIKE H E DOUBLE TOOTHPICK!"

No matter what doctor you see, and what decisions you make, make sure you get copies of all of your medical records including test results. Some doctors do charge for this service, but the fee is limited by law to their actual costs.

For example, if you find someone's elses blood tests in your files (that would have been Sir Donkey Bottom #2), chances are more than average that that isn't the only inaccurate and or misleading chart not (Say, yeah, oh yeah).

Noting errors in your file and requesting that any misleading information be removed or rectified is not the same thing as accusing someone of high treason. A professional office will make every effort to remedy the situation.

But first, no matter what, always, always take the high road. As a journalist I can tell you it is possible to blow someone's doors off and be reasonable and courteous at the same time, but its best to leave their doors intact until you are given no other choice. Catch more flies that way.

Sometimes a misunderstanding is just that: a misunderstanding. Doctors are busy people who make mistakes just as we do and it could just as easily have been a staff error not a doctor error. Survey seeeezs ...What percentage of workers are telling the truth when they say filing is their life?

2. Even if you are inclined to let the "little" stuff go, if there are more serious errors, errors that can result in misdiagnosis, seriously consider challenging them.

When deciding what and when to challenge, do take into account whether you will have a continuing relationship with this doctor or office, whether you are dependent upon them to document disability and whether they have the means to retaliate. This may sound like an exaggeration, but any doctor who is willing to bend the truth may be willing to do much more than that.

3. If Dr. Donkey-Bottom was a referral from your treating physician, discuss the problem with your treating doc. Sometimes a quiet call from the referring colleague can set things straight right quick.

4. If you decide to challenge errors on your chart, put it in writing and make copies. (Always send all paperwork by registered mail. You can never have too much legal documentation.)

First challenge all factual errors and document the proof showing that it is an error if you can obtain such documentation. Correcting simple errors sets the stage so that if you need to challenge wording or assumptions, you have already established that the documentor is careless with facts.

(An example, and yes this really happened, would be the man whose doctor listed him as receiving a dishonorable discharge from the Armed Forces when he had in fact received an honorable discharge. Proving it was a simple matter of providing legal copies of his discharge papers. It also gave him leverage to combat his doctors' conclusions and ill considered opinions)

5. If communicating with the doctor or the doctor's office manager produces no results, each state has a medical licensure board. Some take patient complaints more seriously than others. None of them care if your doctor was rude, but they will take a look at documentation of a misdiagnosis resulting from carelessness or distortion.

There is nothing exciting about this step. Judge Judy it isn't. It is time consuming and tedious and many times the doctor might not get so much as a slap on the hand. But, if enough people make legitimate, well documented complaints it does add up.

Helen Keller summed it up in this way: "I am only one, but I am still one. I cannot do everything, but still I can do something. And because I cannot do everything I will not refuse to do the something that I can do."

Remember hurricanes start one drop at a time, and you have my word as a southerner on that.

libel
li·bel
noun (plural li·bels)
1. law defamation: a false and malicious published statement that damages somebody’s reputation. Libel can include pictures and any other representations that have public or permanent form.
2. attacking somebody’s reputation: the making of false and damaging statements about somebody
3. law written statement: the plaintiff’s written statement in a case under admiralty law or in an ecclesiastical court
transitive verb (past li·beled, past participle li·beled, present participle li·bel·ing, 3rd person present singular li·bels)
1. defame: to publish false and malicious statements that damage somebody’s reputation
2. attack: to give a false and damaging account of somebody
3. law bring a suit for libel: to bring a suit for libel against somebody under Admiralty law or in an ecclesiastical court
[14th century. Via Old French from Latin libellus “little book,” diminutive of liber (see library). Originally “written declaration,” later “something setting out the grounds for a lawsuit.”]

What the Heck are They Talking About: Neurological CFS

Should you take your Doctors Word for It?

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