A Tale of Two Controversies

[Guest guest]

The importance of pain management in Lyme disease should not be

controversial. Yet it is, because we are standing here at the

intersection of two highly dubious " controversies " in our modern

systems of " managed care. "

1) The Lyme controversy

The first controversy concerns Lyme disease, an epidemic which no

one except Lyme patients and Lyme-literate physicians seems willing

to acknowledge. The CDC has conceded the reality of the epidemic,

but done so in a backhanded fashion that leaves key questions like

the seriousness of this illness unaddressed.

Alan Steere and his Yale colleagues have made an organized effort to

downplay both the debilitating nature of Lyme disease and the

difficulties that arise in treating it. Various explanations for

this odd behavior on the part of the CDC and invidual physicians

like Steere have been offered, but do not concern us here. What

matters is the carefully fostered, and unfortunately widespread view

that Lyme disease is an easily managed disease that poses no great

threat to public health.

2) The Chronic Pain controversy

The second controversy concerns chronic pain, another " silent

epidemic " kept hidden not by the reclusive nature of its sufferers

but by an organized effort to deny or downplay well-established

facts. Several studies have found that chronic pain in the United

States is routinely undertreated. Case histories that could tear

your heart out are recited at conference after conference, in

Congressional testimony, just as they are when the subject is Lyme

disease.

While in Lyme disease the great sins of public policy are largely

sins of omission, failures to come to terms with a frank epidemic,

in the area of chronic pain the sins are more aggressive. The

federal government uses our tax dollars to make effective pain

treatment more difficult for doctors to prescribe. The government

does this not on any medical basis but in the name of " the war on

drugs. "

If all wars have their " collateral damage, " a euphemism for innocent

lives destroyed, chronic pain patients have been the principle

victims of the war on drugs. Organized crime, by contrast, reaps

enormous profits from this war and is arguably the main beneficiary

of its existence.

3) Where controversies converge, patients become invisible

These two controversies converge in the treatment of Lyme disease

patients who present with severe, chronic pain. There are few

categories a patient can find him- or herself in, that carry a

comparable stigma or are less likely to be dealt with effectively by

the medical profession.

There are many doctors who know Lyme is real and serious but will

have nothing to do with it. The same is true for chronic pain.

Unfortunately, character traits do come into play here and a

physician who is comfortable turning a cold shoulder to Lyme

patients is all too likely to manifest the same lack of empathy when

presented with severe chronic pain.

So we are talking about a problem whose true significance is in no

way reflected by current standard practice, which goes unrecognized

by physicians and as a result is unreported and not accurately

characterized by current health statistics. We know there is a more

Lyme disease, and more undertreated chronic pain, than anyone

realizes. How large the two pools of patients are, and how far they

overlap, is regrettably a matter of speculation, but for those who

find such things helpful we can say with some confidence that we are

looking at not tens or hundreds of thousands but millions of

suffering human beings.

4) When the door is closed for any of us, the room it opens into

becomes less fit to live in.

These things were true before I became ill, and I fear they may

still be true when I have either recovered or perished in the

effort. They have been the key determinants of the care I've

received - and more importantly NOT received - to date. Because my

illness partakes of these two controversies, physicians and

bureaucrats are often at pains to explain to me that their failure

to provide relief is " nothing personal. "

The experience of seeking care in this context has been for me, and

for many others, profoundly DE-personalizing. If I try to discuss

this in medical forums, I may be told that I am upsetting their

focus with " political " concerns. If I try to bring it up in

political forums, I am asked why I am dragging my personal medical

problems into matters of public concern.

I tend to think questions with this kind of orphan status, that no

matter where one takes them are always referred somewhere else, tell

us things about ourselves and the times in which we live that we

can't learn any other way.

An obscure woman, apparently guilty of getting pregnant by someone

other than her husband, goes door to door, seeking a place to lie

down and give birth. No one has room. For Christians, this story

describes the arrival in the world of the messiah, possessed of

truths which no human being can afford to ignore. In this very

Christian country of ours, there continues to be " no room at the

inn " for those who lack the good fortune to suffer from an approved

condition.

Every tale of woe contains the seeds of its own redemption. If one

believes, as I do, in the essential relatedness of humanity, the

redemption of any one person's suffering can lighten the burden of

suffering for all. It is this promise, born anew every time another

human being enters the world, which we reject, under cover of

controversy. It is no wonder that our institutions are not fit for

human habitation, when one considers those who are barred from

entering.