How to Be Sick (4 page)

 

How do you name my illness? et me count the ways.

 

Chronic Fatigue Syndrome.
“CFS is a ‘garbage pail’ diagnosis,” an infectious disease specialist told Tony and me. He said doctors use it when it’s clear that a patient is sick but standard medical tests have failed to pinpoint the cause. CFS has become the default diagnosis given to me. It’s what doctors write down on forms. (The medical slang “garbage pail” is rejected by all the major CFS experts whose tireless efforts to solve the mystery of symptoms that have been collectively labeled “CFS” have given hope to millions saddled with this diagnosis.)

 

 

Chronic Fatigue and Immune Dysfunction Syndrome.
CFIDS is an alternative name given to CFS, partially in an attempt to have it taken seriously and partially because a subset of CFS patients appear to have an overactive immune system that produces flu-like symptoms as the body remains in a perpetual state of “sickness response.”

 

Myalgic Encephomyalitis.
ME is the name given to CFS in almost every country but the United States. Its literal translation would be “muscle pain and brain inflammation,” but it’s as non-descriptive of what sufferers experience as is the phrase Chronic Fatigue Syndrome—although being diagnosed with ME avoids being simplistically labeled as someone who is just complaining about being tired. CFS, CFIDS, and ME are synonymous and purport to describe the same illness. But I’ve met dozens of people on the Internet who have been given one of these diagnoses and none of us have identical symptoms. Some have chronic sore throats and swollen lymph glands. Others (like me) do not, but suffer from an unremitting flu-like malaise. Some experience cognitive impairment, including difficulty processing information, forgetfulness, and an inability to form sentences properly. Others (like me) do not, except to the extent that the flu-like symptoms make it hard to concentrate. Some suffer from muscle and joint pain. Others (like me) do not. The only symptom that those with this diagnosis share is “fatigue” (which is a feature of almost every illness, from the common cold to cancer). And even this symptom ranges from a fatigue that sets in only after a person is active, to an ever-present bone-crushing fatigue that prevents a person from ever straying far from the bed. I’m convinced that CFS encompasses several discrete illnesses and that until the general medical community recognizes this, little progress will be made in finding a cause or a cure.

 

 

Post-Viral Syndrome.
A few decades ago, the Centers for Disease Control (the CDC) rejected the name PVS in favor of CFS. Some doctors still use the name Post-Viral Syndrome and did so with me, especially in the first two years following the “Parisian Flu.”

 

 

Viral Induced Central Nervous System Dysfunction.
VICD is a fairly recent designation, used to describe a subset of CFS patients whose blood work indicates there may be a reactivation of herpes viruses that usually lay dormant in the body after their acute childhood phases. My blood work suggests that I fit this subset, although antivirals haven’t helped me. The theory is that an acute infection—in my case, the “Parisian Flu”—triggers a reactivation of the viruses, causing the immune system to become engaged in a constant low-grade war against them.

 

 

Orthostatic Intolerance
and
Postural Tachycardia Syndrome.
These two diagnoses refer to poor blood circulation, which makes it difficult to maintain a standing position. They are thought to be results of whatever is wrong with me as opposed to the cause.