Health professionals have known about the problem of this time lag for years, and back in 1999 were asking in the Journal of Clinical Psychiatry, “Is bipolar disorder still underdiagnosed? Are antidepressants overutilized?” The short answer is, ‘yup.’ That study actually came in with one of the lower percentages we’ll see–they found that 40% of bipolar patients were misdiagnosed, almost all given the diagnosis of unipolar depression. They found it took somewhere between 7.5-9.8 years to correct the misdiagnosis . (As to the second part of the title, yes, antidepressants were overused–and no good came of it.)
The same journal ran a study in 2003 asking how far. . .well, here you go, here’s the (quite lengthy) title: “Perceptions and impact of bipolar disorder: how far have we really come? Results of the national depressive and manic-depressive association 2000 survey of individuals with bipolar disorder.”
This study compared the ‘experience’ of selected bipolar individuals from 2000 with those of a similar group they had sampled in 1992.
In June 2000, 4192 self-administered questionnaires were sent to National Depressive and Manic-Depressive Association chapters for distribution to support group participants diagnosed with bipolar disorder. By July 31, 2000, the first 600 completed surveys were analyzed. One-third of the respondents “sought professional help within 1 year of the onset of symptoms.” Now, acknowledging, yet again, that I am a kvetch, a year seems like an exceedingly long time to be hanging about with your symptoms without seeking the assistance from someone who might actually help you alleviate them. I mean, are people trying voodoo? Fish head soup? Exorcism?
Be that as it may, a good 69% of those who somehow made it to a doctor’s office actually received the wrong diagnosis (perhaps exorcism has something going for it). Researchers found that those who were misdiagnosed saw, on average, 4 doctors before actually receiving the proper diagnosis. (This really does make me wonder about doctors. Unless. . .maybe some of them were opthalmolgists?)
And one-third waited over 10 years before accurately being diagnosed as bipolar.
Things seemed a little better–if you go by numbers alone–in Europe. In 2003 researchers mailed questionnaires to 3450 members of 11 European countries. Of course, given that you’re working with BD people, the vast majority didn’t respond.) 1760 people completed their questionnaires and once the researchers ran their statistics magic, they found that the average BD patient in Europe waits (only) 5.7 years for a correct diagnosis. I mean, sign me up for treatment in, say, Portugal, right? Or–better yet–why not Russia?
But definitely NOT in the UK or Scotland. The absolutely worst numbers were from a 2012 survey carried out by Bipolar UK, the Royal College of Psychiatrists and Bipolar Scotland. They followed 706 people who turned out to have BD and found that 15% were diagnosed promptly and accurately. For the remaining 85%, things did not go well. Most were wrongly diagnosed with unipolar depression. And, for the vast majority, matters didn’t right themselves quickly. The researchers found that about 4 out of 5 of those with BD will struggle to get a correct diagnosis–with the average delay (you really need to be sitting down for this) of approximately 13 years.
The delay is not just ‘inconvenient.’ It can be responsible for worsening the course of the illness and, at times, it can be deadly. First, simply due to lack of appropriate treatment, the patient has more episodes, which negatively impact functioning. Second, because the most common misdiagnosis is unipolar depression, patients are often treated with antidepressants, which are counter-indicated in BD, frequently triggering triggering manic episodes, or worse, something called rapid cycling four or more episodes of mania or depression within a single year). A study on BD patients misdiagnosed with unipolar depression found that 55% of them developed mania and 23% became rapid cyclers.
Finally, there’s the issue of suicide. Those with BD suicide at 20 times the rate of the general population. By failing to accurately recognize–and properly medically manage–the illness, the medical community is giving up on an opportunity to at least try to decrease this risk.