I serve as a consultant to a student organization at a nearby university. These enterprising students produce patient-education materials (brochures, posters, handouts, etc) for several chronic diseases, and their mission—a noble one—is to distribute these materials to free clinics in underserved communities, with a goal to raise awareness of these conditions and educate patients on their proper management.
Because I work part-time in a community mental health clinic, I was, naturally, quite receptive to their offer to distribute some of their handiwork to my patients. The group sent me several professional-looking flyers and brochures describing the key features of anxiety disorders, depression, PTSD, schizophrenia, and insomnia, and suggested that I distribute these materials to patients in my waiting room.
They do an excellent job at demystifying (and destigmatizing) mental illness, and describe, in layman’s terms, symptoms that may be suggestive of a significant psychiatric disorder (quoting from one, for example: “Certain neurotransmitters are out of balance when people are depressed. They often feel sad, hopeless, helpless, lack energy, … If you think you may be depressed, talk to a doctor.”) But just as I was about to print a stack of brochures and place them at the front door, I thought to myself, what exactly is our goal?
Experiencing symptoms of anxiety, depression, or insomnia doesn’t necessarily indicate mental illness or a need for medications or therapy; they might reflect a stressful period in one’s life or a difficult transition for which one might simply need some support or encouragement. I feared that the questions posed in these materials may lead people to believe that there might be something “wrong” with them, when they are actually quite healthy. (The target audience needs to be considered, too, but I’ll write more about that later.)
It led me to the question: when does “raising awareness” become “disease mongering”?
“Disease-mongering,” if you haven’t heard of it, is the (pejorative) term used to describe efforts to lead people to believe they have a disease when they most likely do not, or when the “disease” in question is so poorly defined as to be questionable in and of itself. Accusations of disease-mongering have made in the area of bipolar disorder, fibromyalgia, restless legs syndrome, female sexual arousal disorder, “low testosterone,” and many others, and have mainly been directed toward pharmaceutical companies with a vested interest in getting people on their drugs. (See this special issue of PLoS One for several articles on this topic.)
Psychiatric disorders are ripe for disease-mongering because they are essentially defined by subjective symptoms, rather than objective signs and tests. In other words, if I simply recite the symptoms of depression to my doctor, he’ll probably prescribe me an antidepressant; but if I tell him I have an infection, he’ll check my temperature, my WBC count, maybe palpate some lymph nodes, and if all seems normal he probably won’t write me a script for an antibiotic.
It’s true that some patients might deliberately falsify or exaggerate symptoms in order to obtain a particular medication or diagnosis. What’s far more likely, though, is that they are (unconsciously) led to believe they have some illness, simply on the basis of experiencing some symptoms that are, more or less, a slight deviation from “normal.” This is problematic for a number of reasons. Obviously, an improper diagnosis leads to the prescription of unnecessary medications (and to their undesirable side effects), driving up the cost of health care. It may also harm the patient in other ways; it may prevent the patient from getting health insurance or a job, or—even more insidiously—lead them to believe they have less control over their thoughts or behaviors than they actually do.
When we educate the public about mental illness, and encourage people to seek help if they think they need it, we walk a fine line. Some people who may truly benefit from professional help will ignore the message, saying they “feel fine,” while others with very minor symptoms which are simply part of everyday life may be drawn in. (Here is another example, a flyer for childhood bipolar disorder, produced by the NIH; how many parents & kids might be “caught”?) Mental health providers should never turn away someone who presents for an evaluation or assessment, but we also have an obligation to provide a fair and unbiased opinion of whether a person needs treatment or not. After all, isn’t that our responsibility as professionals? To provide our honest input as to whether someone is healthy or unhealthy?
I almost used the words “normal” and “abnormal” in the last sentence. I try not to use these words (what’s “normal” anyway?), but keeping them in mind helps us to see things from the patient’s perspective. When she hears constant messages touting “If you have symptom X then you might have disorder Y—talk to your doctor!” she goes to the doctor seeking guidance, not necessarily a diagnosis.
The democratization of medical and scientific knowledge is, in my opinion, a good thing. Information about what we know (and what we don’t know) about mental illness should indeed be shared with the public. But it should not be undertaken with the goal of prescribing more of a certain medication, bringing more patients into one’s practice, or doling out more diagnoses. Prospective patients often can’t tell what the motives are behind the messages they see—magazine ads, internet sites, and waiting-room brochures may be produced by just about anyone —and this is where the responsibility and ethics of the professional are of utmost importance.
Because if the patient can’t trust us to tell them they’re okay, then are we really protecting and ensuring the public good?
(Thanks to altmentalities for the childhood bipolar flyer.)
Thought Broadcast 
hey there, don’t know if you ever saw the documentary “Feed your head”
I just saw it last week on doc channel, it talks about alternatives to as one woman put it “chemical straightjackets” and non-conventional treatments for those diagnosed with schizophrenia, they also speak about the money in pharmaceuticals, and the lack of profit in making people well, a copy can be purchased on documentarychannel.com/store. I found it very interesting and informative.
Instead of publishing a separate flyer about bipolar disorder or schizophrenia, etc., why don’t the students print up a generic flyer on things that everyone should tell a doctor at a medical exam?
Some of these things would be those mentioned in the student depression flyers — the unusual tiredness, lack of interest, sleep problems– but the doctor would be able to consider these symptoms as part of the big picture. From there, a blood test to rule out a thyroid problem, vitamin deficiency, or a talk about sleep hygeine may ensue instead of a script for Prozac.
Doing it this way would, in theory, pick up those who really did have a psychiatric disorder while providing the right medical care to the others whose symptoms were caused by something else. And for the patients themselves, it would surely cut down on anxiety.
Jackie, that’s actually a great idea. We need to encourage productive interactions between doctors and patients and not necessarily drive the discussion in the direction of a particular diagnosis or treatment. (Unless the diagnosis has already been made, in which case it’s good to talk about response to treatment and long-term treatment goals.) This experience simply showed me that, even when everyone involved has the purest of intentions, we have to ask whether there’s an underlying message that overpowers those “noble” intentions.
mainlyblue, no I have not heard of that documentary but will check it out. Orthomolecular medicine (the subject of that film, according to its website) may in fact have a lot to offer modern psychiatry. The question is, is OM good for psychiatry, or is it simply a distraction/diversion from some of the more negative things that are currently the standard of care? I honestly don’t know the answer (and have no axe to grind), so I’m eager to learn more myself. I’ll write more as I do.
Thanks for another great blog!
Just to add context, I’d like to bring to the discussion the cultural backdrop, and the work of many psychologists and psychiatrists (Freud, Fromm, Laing, Szasz, Cushman, and many others). What’s needed, from my perspective, is ongoing acknowledgement of the ways in which our society is in and of itself the source of many “symptoms,” which if understood in that context are actually an adaptive response to an insane society. This is not to say that psychiatric and psychotherapeutic treatment aren’t appropriate and helpful–they are. But, again in my opinion, unless they take into account the cultural-social-political-economic matrix in which these “disorders” occur, they run the risk of colluding with the cause of the illness.
One of the worst examples of disease mongering is the MDQ, Hirschfield’s reductionistic screening instrument for “Bipolar Spectrum”. Not sure, but I believe it’s a copyright of Astra-Zeneca. Note that no specific duration or exclusion criteria are mentioned with the nonspecific checklist of symptoms, any number of which coexist among the the cluster B personality disorders… http://www.seroquelxr.com/support-resources/bipolar-disorder-test.aspx
I took a funny bipolar test
http://illnessquiz.com/bipolar-test/
Was doing some thinking about your blog and feel I may have contributed to “disease mongering”. While doing some research regarding bipolar disorder, I found an area describing SAD or seasonal effective disorder, as a matter of fact I did a blog on this topic. The outcome of several studies seem to suggest that SAD is not a disorder of its own but bipolar disorder governed by season, the symptoms mimic those of bipolar disorder however do not affect the individual during more pleasant months, this conclusion is only considered if this is a repeated cycle not a one time occurrence……. I prefer to call it “cabin fever” don’t we all have it from time to time?
More on the inadequacy of the MDQ in reliably diagnosing Bipolar Disorder from a Medscape article by Zimmerman, who confronted academic psychiatry on their promulgation of the bipolar syndrome with a poster presentation at the APA meeting a few years ago. In case you don’t have a subscription to view this article, it shows that the 4 fold false positive diagnosis of bipolar utilizing the MDQ correlates with a more reliable diagnosis of Borderline Personality Disorder with the more sophisticated SCID tool, which takes about 2 hours to administer. (a painstaking reminder from my clinical research days during my residency over 20 years ago!)
http://www.medscape.com/viewarticle/730516
doctorz and mainlyblue, your comments illustrate the tremendous overlap among conditions that may in fact be discrete entities, or they could be formes frustes of one singular “mood dysregulation syndrome.”
The purpose of my post was to point out that educating people about illness may lead to self-identification and overdiagnosis. Your comments point out yet another problem: Where does one disorder end and another begin? And if we can’t answer that question, then how are we to interpret decades of research on “diagnoses” that we assume to be valid?
Great post! I don’t really think people need more education about mental illness. I think we’re saturated with it. I can’t turn the t.v. on without hearing about Abilify and I’ve probably seen that stupid sad zoloft ball bouncing along hundreds of times.
The ads are a constant message that if we’re down in the dumps something must be wrong, and we must have a chemical balance and should see the doctor and ask about that particular pill. At the end of some of these ads the woman is happily walking down a sunny trail or laughing at a party, and life is grand. It’s effective marketing.
I got sucked in for a while, and I think what I really needed at the time was a good therapist not one drug after another. I look back on that time period and I think what I was suffering from was actually young adulthood. A lot of time wasted, but lessons learned.
Steve-
My issue with these “awareness” flyers is their inaccuracy. Case in point, the bipolar flyer that got me all worked up with inaccuracies highlighted here. Whether you believe in bipolar disorder as such or no [and I’m a definite “no”] this level of dishonesty is unacceptable — and it smells like pharma to me.
Yours, as always,
ALT
“They do an excellent job at demystifying (and destigmatizing) mental illness, and describe, in layman’s terms, symptoms that may be suggestive of a significant psychiatric disorder”
I would actually wonder whether the flyers saying those symptoms may be suggestive of a disorder actually makes them more stigmatizing, rather than less.
“Certain neurotransmitters are out of balance when people are depressed. They often feel sad, hopeless, helpless, lack energy, … If you think you may be depressed, talk to a doctor.”)”
Hmm, under that criteria, all the victims of the Japanese Tsunami should be on an SSRI.