When a doctor knows exactly what is causing illness and prescribes appropriate treatment, the patient leaves the office content and returns to a normal life.
When medical knowledge fails and the physician either does not know what is causing the illness, has not asked enough questions, has not run enough tests, or has ulterior motives in his/her own personal financial interest to limit testing and time spent with the patient for insurance or other reasons, the patient is left sick, tired, financially drained, and desperate for answers as health continues to decline.
Garbage pail diagnoses are often provided so that insurance can be billed and the patient ushered from the office. These faux diagnoses may include psychiatric labels such as “anxiety” or “depression”. The real symptoms of physical illness are ignored. The patient is not referred to another physician for a second opinion or a specialist for more detailed testing, largely because the physician believes there is no treatment, or in some cases no medically accepted or proven treatment. Useless recommendations aimed at coping with current and increasing illness may include “doing something to relax” or “go see a movie’.
Once garbage pail labels are placed on patients, their credibility is lost and they are often viewed as “mentally ill”. Little the patient says or reports about their health is paid attention to in future visits. The physician may believe, and even state, “I have real patients to see.”
This loss of credibility may carry along with medical records from one provider to the next. It is not uncommon for physicians to completely ignore what a patient reports and refuse to take clinical notes on changes in the condition without running any diagnostic tests to rule out possible medical disorders. Such patients may develop a new and diagnosable medical condition that goes disregarded, largely because of the initial faux diagnosis.
It has been said that a doctor’s biggest trepidation is an intelligent and knowledgeable patient. Patients pushed aside in this way are forced to educate themselves and become intelligent about their own condition so that they can find the help they need to regain a healthier life. Patients want to know what is causing their illness so they can understand their suffering, even if there is no medical treatment.
At some point, the proud medical field came to believe that it was not appropriate to not have and answer. This resulted in the psychologizing of any condition for which science has not fully identified a cause and pharmaceutical companies have not developed a drug based treatment. This forces individuals to seek their own answers, sometimes after trying useless psychiatric drugs or behavioral therapies that have caused additional harm.
Once a patient’s research has led to one or more possible diagnoses, electronic support groups aimed at the suspected condition play a large role in the gathering of information, asking questions, and gaining of support and understanding from other patients who can relate to the symptoms and life disruption. It is within these support groups that patients find solace, answers, and physicians who can render a genuine confirmatory diagnosis and recommend pertinent treatment.
The physicians who routinely issue garbage pail diagnoses view this as medicalization, or the process by which so-called normal health or behavior conditions and life experiences come to be defined and treated as medical issues. This statement in itself indicates a lack of confidence that the ailment is authentic, largely driven by the frequent lack of availability of pharmaceutical treatment for such ailments. Despite the lack of pharmaceutical treatments, there are often effective non-pharmaceutical treatments that help to reduce and control symptoms.
In medicine, an ailment is only a real medical condition when there is a pharmaceutical drug to treat it. Fibromyalgia finally achieved this recognition within the last year when a drug was found effective at reducing the pain associated with fibromyalgia. Despite this newfound “treatment” and acceptance of fibromyalgia, the ailment has been unfeigned all along; its sufferers quite literally tormented with garbage pail diagnoses in the past.
Researcher KK Barker at Oregon State University studied the role electronic support groups play in consumer-driven medicalization by observing an online fibromyalgia support group for a year. Barker found a growing influence of lay expertise in the face of medical uncertainty. Barker acknowledged how the “routine practices of this electronic community simultaneously (and paradoxically) challenge the expertise of physicians and encourage the expansion of medicine's jurisdiction.”
It’s not accepted tradition to walk into a doctor’s office, receive a diagnosis, and be told we don’t’ have any way to treat it yet and sent home. Though for many, that would be much preferable to having the ailment inappropriately denied as a mere “life experience” while debilitating fatigue and pain continue to steal life away.
Garbage pail diagnoses like anxiety and depression are frequently insulting and off base to the patient and his/her family and friends. While the medical profession detests “medicalization”, the profession has, in essence. Created medicalization through assuming patients will be better off with a wrong diagnosis, an antidepressant, and some coping skills. On the contrary, this denunciation can lead to deep seeded frustration, which may aggravate the ailment and lead to newfound hopelessness, depression, and anxiety.
Barker described the fibromyalgia support group observed, stating, “Drawing on their shared embodied expertise, participants confirm the medical character of their problem and its remedy, and they empower each other to search for physicians who will recognize and treat their condition accordingly.”
The bottom line is people just want to get better, by whatever genuine means available. If medicalization is frowned upon in the medical community, then it’s high time that medicine discontinue psychiatric labeling without a license, admit when an answer is evasive, run additional tests regardless of cost, refer cases to other colleagues and specialists, focus on managing symptoms regardless of etiology, and offer trial and unproven treatments when no others are available or nothing else has worked.
Barker’s study introduces physician compliance as a useful concept for understanding the relationship between lay expertise, patient-consumer demand, and contemporary (and future) instances of “medicalization”.
Medicine is not about the bottom line, it’s about human lives. Have we forgone “first do no harm” to instead inflict psychological trauma via deligitimization? If so, it is left to wonder whether medicine is endeavoring to create supplementary patients by inflicting injurious illnesses rather than practicing restorative medicine.
ReferenceBarker KK. Electronic support groups, patient-consumers, and medicalization: the case of contested illness. J Health Soc Behav. 2008 Mar;49(1):20-36.
Note: This article appeared in the MCS America News, June 2008, Volume 3, Issue 6
at http://mcs-america.org/june2008pg333435.pdf
Key Words: multiple chemical sensitivity, chemical sensitivity, chemical sensitivities, multiple chemical sensitivities, MCS, EI, environmental illness, sick building syndrome, idiopathic environmental intolerance, fibromyalgia, chronic fatiuge, FM, CFS, mold illness, clinical ecology, alternative medicine, environmental medicine, neuropathy, encephalopathy, toxic, chemical
