Towards the end of the class discussion on September 28 someone had touched on the idea that scientists do not tend to ask those suffering from an illness or disease to participate in the scientific discourse. I believe the comment was, we don’t ask a diabetic about diabetes.
What I would like to ask is: why not? While someone who suffers from a disease or disorder may not know the scientific causes of said illness, the person is certainly aware of the difficulties and variables to living with such illness. In this respect, shouldn’t their opinions matter? To illustrate my point, I came across this article a few months ago that nicely illustrates how scientists can gain valuable information from asking those diagnosed with the illness. The particular study (it’s a quick read) asked US military veterans diagnosed with post-traumatic stress disorder (PTSD) what was the hardest part of living with the disorder. The study’s purpose was to examine which problems associated with PTSD actually correspond to lower quality of life, as indicated by the patient’s willingness to die sooner or to risk life-threatening treatment to relieve their symptoms.
PTSD has been in the DSM (Diagnostic and Statistic Manual used in psychology/psychiatry) since the 1980s, why has it taken until 2011 to ask those who suffer from the disorder what they think? The benefits to such inquiry are numerous. For example, it allows researchers to know what symptoms are most troublesome for patients and thus can be treated first. Now while it is obvious that those who suffer from illness and disease may not be scientific professions, couldn’t they at least be considered professionals of living with the illness/disease? Doesn’t their opinion and experience count for something within appropriate studies?