In my last column, I invited readers to take an online survey of "Who are the mentally ill?" The term is used freely by the media, politicians, and advocates, as well as by physicians, as though this were a clearly defined group of people. Yet it has never been clear to me who, precisely, is being referenced.
The survey was designed to parse out what features respondents associate with the term "mental illness." The first four questions addressed whether it mattered who administered the care – a psychiatrist, primary care doctor, or a psychotherapist – and whether the treatment offered was therapy or medications. The survey then addressed whether specific medications or diagnoses are considered to be mental illness, and whether hospitalization – both voluntary or involuntary – has an association. What about the expression of the symptoms themselves?
Three questions were asked regarding hallucinations and delusions, serious suicide attempts, and volatile behavior that impairs the ability to maintain work or relationships. What about governmental labels – does receiving Social Security Disability Insurance (SSDI) mean one is mentally ill? And does the association with mental illness last forever?
What if someone is well but requires medications to remain so? And what about those who finished all treatments long ago and have remained well? Finally, respondents were asked whether they had ever been on medications or hospitalized themselves, and whether they consider themselves to be mentally ill, now or in the past.
First, let me tell you a little about how this survey was circulated. A link was placed on my Twitter feed with an invitation to take the survey. My Twitter followers who clicked on the link were brought to a blog post with a few paragraphs of introduction, followed by the survey. Obviously, there are several steps to get there, and a very low response rate was expected. I also assumed that respondents would be skewed to those with an interest in mental health issues.
Since I only have about 500 followers on Twitter, the reach is limited. A few people retweeted the link to their own followers, and I spent another 15 minutes sending tweets to some of the people I follow, specifically requesting a retweet. I targeted people with an interest in mental health issues or health information technology, and many retweeted it to a much larger audience. If I was tagged in the retweet, I could follow the trail, so I know the link was distributed in the United Kingdom, Ireland, and Norway.
Next, I placed the link on my personal and blog Facebook pages, and I invited members of my neighborhood listserv and of the Maryland Psychiatric Society listserv to take the survey. I also wrote blog posts on Psychology Today and the one you might have seen on Clinical Psychiatry News. The CPN staff supported this by e-mailing out a link to my article. Since I could follow how well read this was by whether or not readers were taking the survey, several hours after the article went up on CPN, I asked that the headline be changed – no one was taking the poll – and by the next day, with a new article title, the survey had another hundred respondents.
This sounds like a lot of time, but it wasn’t; it took several hours over the course of a week, mostly done on a day it snowed here in Maryland when I had a several patients cancel. The survey was left open for 12 days, during which time I periodically would tweet out a link. Given my expectation for a low response rate, I was pleased: 696 people took the survey.
Most of the results were not surprising. Seeing a psychiatrist, as compared to a therapist or primary care doctor, is associated with "mental illness," more so if the patient is prescribed medications than if the patient is seen for psychotherapy. Certain diagnoses and medications are more linked with the term, though I was surprised that more people deemed pedophilia and intermittent explosive disorder to be "mental illness" than depression. Both gender identity disorder and attention-deficit disorder were linked with the label by fewer respondents. Only half of those who took the survey considered a serious suicide attempt to be indicative of mental illness, a surprising figure given that the term is used freely with regard to gun legislation, and most gun deaths are suicides.
Less than a third of respondents associated getting SSDI payments for psychiatric reasons with mental illness, a finding I was surprised by, as it seems to me that once an individual is so ill he cannot work and requires government support, that the label might be warranted. While the strongest association with the label was for the presence of hallucinations and delusions, there were still 11% of respondents who did not feel these symptoms were indicative of mental illness. Of those taking the survey, 60% had either been hospitalized or treated with a medication, and 25% considered themselves to be mentally ill. I’ll hold off with any more statistics, and invite you to view the results and add your comments here.