You’re convinced you have chronic fatigue syndrome, though you can’t get your doctor to believe you. Or maybe you think you’ve got multiple chemical sensitivity because you seem to be allergic to everything from fabric softener to perfume.
Or perhaps it’s some kind of chronic Lyme disease – after all, ticks are everywhere and you haven’t felt right in years.
Or you think that your kid – unlike your neighbor’s truly unruly brats – has attention deficit or hyperactivity disorder because she’s so moody and has trouble in school.
Although we live longer and more healthily than ever before, we have become a nation of worriers – hypochondriacs, even – convinced that we have what some doctors now call “fad diseases” or the latest “diagnosis du jour.”
Now before anybody goes ballistic, let’s be clear here.
Just because a disease might be called “trendy,” in the sense that lots of people suddenly seem to have it, doesn’t mean it’s not real. And there’s no question that the medical establishment has a lousy history of telling people – especially women – that some very real diseases are all in their heads when they aren’t.
But while some of these trendy new diseases are unquestionably real, it is also true that certain syndromes like chronic fatigue, attention deficit disorder and the vague muscle aches of fibromyalgia – to name but a few – seem to act like magnets for people who don’t really have them.
What sufferers of these and other mysteriously modish maladies may have – and definitely don’t want to hear about – is depression, or some other more mundane but stigmatized problem.
At least that’s what Dr. Kevin Ferentz, associate professor of family medicine at the University of Maryland School of Medicine, thinks, and to say that this thesis is as welcome as a blizzard in June is putting it mildly, even though depression is highly treatable, especially compared to these exotic diseases people often think they’d rather have.
Ferentz acknowledges that a doctor can miss a diagnosis that a patient gets right. Furthermore, he says, “Every one of these fad illnesses has a piece that is real.
“But unfortunately,” he goes on, “the criteria for making the diagnosis are sometimes vague. And sometimes, even if there are criteria, those of us in primary care may be unaware of them. So these illnesses are often overdiagnosed. . ..”
They are indeed. Take chronic fatigue syndrome, for instance. Though some doctors are skeptical, others, among them Dr. Anthony Komaroff, chief of general internal medicine at Brigham and Women’s Hospital, are convinced that CFS is real and that it has a genuine, albeit undiscovered, biological cause.
Many people with genuine CFS, he says, show neurological abnormalities on brain scans, have persistent immune system hyperactivity and abnormalities in blood pressure regulation, perhaps because they have a deficiency of the hormone, cortisol.
For several years, the federal Centers for Disease Control has estimated that CFS affects 4 to 10 people per 100,000 adults, but newer research suggests the real prevalence may be closer to 100 in 100,000, or 1 in 1000. Yet 20 times that number without CFS complain to their doctors of constant fatigue.
“It’s very true that many people think they have CFS and don’t,” says Komaroff. “If you take 100 people walking into the doctor’s office saying they’re tired, maybe three will have CFS and maybe 50 percent will have an underlying depressive disorder. Depression is a far more common and important cause of fatigue than CFS, but a lot of people who are depressed want a physical explanation.”
Or take Lyme disease, a tick-borne illness that has struck nearly 80,000 people since the CDC began keeping track in 1982 and now causes at least 8,500 new cases annually.
There’s no doubt that both acute and chronic forms of Lyme disease are real, that they’re caused by a spirochete passed by the bite of an infected tick and that they are treatable with antibiotics, says Dr. Allen Steere, director of the Lyme disease program at the New England Medical Center.
“But along with that has come the ‘other’ Lyme disease,” he says, a syndrome of pain and fatigue of unknown cause.
Diagnosis is tricky because people who’ve had Lyme disease score positive on antibody tests long after the infection is over – even if their later problems have nothing to do with it.
Of nearly 800 patients who visited Steere’s clinic during a five-year period, he says, 23 percent had chronic Lyme disease; another 20 percent had had it and then developed something else, usually pain and fatigue that could be called genuine post-Lyme disease; and 57 percent had a pseudo-Lyme disease, usually a pain and fatigue syndrome.
Like Ferentz, Steere believes that “fad diseases absolutely exist” and that many people are convinced they have Lyme disease when they don’t. But that doesn’t mean, he says, that they aren’t suffering or don’t have an illness.
“These pain and fatigue syndromes can be awful, debilitating problems,” he says. And while depression is one cause, so are infections, head trauma, other injuries or emotional trauma.
And what of attention deficit disorder, chemical sensitivity and other trendy troubles?
Even Dr. Bruno Anthony, a clinical psychologist and director of the Maryland Center for Attention Disorders, says that while ADHD (attention deficit/hyperactivity disorder) “is not a fake, bogus disease,” it is often misdiagnosed.
Officially, attention deficit disorder is a genuine disorder. That means that a bunch of psychiatrists got together, gave a name to a collection of symptoms such as distractability, disorganization and impulsivity and printed it in the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders, the psychiatrist’s bible.
But increasingly, it’s become a catch-all diagnosis that medicalizes troublesome behavior in kids – and adults – and is used to justify treatment with drugs such as Ritalin.
“Parents and teachers can be eager to label a child as having ADHD,” says Anthony. “That’s not to say that they might not be correct, but there are other reasons for inattentive and disruptive behaviors – anxiety or depression for example. And sometimes it’s just plain rowdiness.”
But it’s multiple chemical sensitivity that is perhaps the most controversial “fad illness. “At least from a scientific point of view, it’s total bull,” says Ferentz, “but that doesn’t mean that patients aren’t genuinely suffering from something.”
To be sure, it is sometimes recognized as a disability by the Social Security Administration and the US Department of Housing and Urban Development under the Americans with Disabilities Act.
But the matter is hardly settled. Just last month a federal judge ruled that a Millis woman claiming to have MCS was not entitled to force visiting nurses to accommodate her because there was not enough evidence to show that MCS is a disability. “Too many people are walking around thinking they have a medical problem when they just have life,” says Ferentz. “A lot of these illnesses are ‘bad feelings.’ But there’s no such thing as good feelings and bad feelings – we all have a range of feelings – happiness, anger, sadness, grief.”
And when people insist they have a fad illness when they don’t, “the harm is that they don’t get treated for their true illness,” says Dr. Mark Ehrenreich, director of consultation psychiatry at the University of Maryland School of Medicine.
Often, the underlying illness is depression, but it can be other treatable problems like anemia, thyroid dysfunction or even cancer.
The bottom line, says Dr. Thomas Delbanco, chief of general medicine and primary care at Beth Israel Hospital, is that “medicine remains more art than science,” which means patients should “stay away from the doctor who says ‘This is all depression’ or ‘This is all chronic fatigue.’ “
Indeed, says Dr. Kathleen Mogul, immediate past president of the Massachusetts Psychiatric Society, “It’s not impossible to have both.”
To some, like Dr. Jerome Kassirer, editor in chief of the New England Journal of Medicine, the best bet “is to get a good doctor . . . and if no physical cause can be found, consider the possibility that there are other factors responsible.”
Ferentz thinks this is backwards. It would be far better, he says, if doctors made more effort to “rule in” depression or anxiety and less trying to rule out everything else.
This may not be music to your ears. Giving up a cherished self-diagnosis is always tough, perhaps especially if it’s not true. But you could end up feeling a lot better faster.
Depression common, easily treated
The great irony about thinking you have a faddish or “socially acceptable” disease, if what you’ve really got is depression, is that depression is usually far more treatable – and much more likely to be the right diagnosis because it’s a kit more common.
Epidemiological studies show that over the course of a lifetime, women have a 10 to 25 percent chance of having a major depressive disorder, and men, a 5 to 12 percent chance, says Dr. Mark Ehrenreich, director of consultation psychiatry at the University of Maryland School of Medicine.
On any given day, 5 to 9 percent of women are seriously depressed and 2 to 3 percent of men, he adds, noting that these figures refer to “major depression.” Many more people suffer less serious depressive problems.
Unfortunately, depression still carries a social stigma, but it shouldn’t. It is a genuine disease with real physiological characteristics.
It is also highly treatable. Anti-depressant medications are effective at least 70 percent of the time, doctors say, and psychotherapy can boost this success rate further.
And unlike some “fad illnesses,” depression is well defined, though both doctors and patients often miss what should be an obvious diagnosis, sometimes because patients don’t say they feel down even if they exhibit other signs of the disease.
Typically, only a third of depressed patients tell their doctors that they feel depressed. Of the rest, 80 percent go to the doctor complaining of other things like insomnia or weight loss. In this group, doctors make the correct diagnosis – depression – only about 12 percent of the time.
If you have had at least five of the following nine symptoms for at least two weeks, there is a good chance you have a major depression and should seek treatment. Those signs are:
– Depressed mood, which can include pervasive feelings of sadness or irritability.
– Sleep disturbances – both too much and too little.
– Distubances in appetite – usually eating too little but sometimes, eating too much.
– Loss of energy.
– Difficulty concentrating.
– Feeling guilty.
– Psychomotor retardation or agitation – being very slowed down in your movements or being unable to sit still.
– Thoughts of suicide or death.
– Anhedonia, or the inability to enjoy things.