Anyone who has ever looked up a “serious mental illness” like bipolar disorder has been smacked in the face with dire warnings and frightening statistics about misdiagnosis. If you google my lifelong companion ADD, you’ll see lots and lots of dire warnings and hand-wringing about overdiagnosis. But you won’t run into are dire warnings, frightening statistics, and hand-wringing about repeated, compounded misdiagnoses.
It’s really bad for people with mental health issues to get the wrong diagnosis and treatment. But it’s just as bad for those with somatic health issues to get the wrong diagnosis and treatment.
And it’s very, very easy to get misdiagnosed. Consistently. Repeatedly.
How does it happen? The biggest problem is that myriad conditions can cause psychological symptoms: vitamin deficiencies, endocrine imbalances, chronic stress, and many more. But the main problem, from what I’ve seen, is cost-control driven negligence: major psychiatric diagnoses made on the first 15-to-30-minute visit, often by a clinician without a medical degree. Add in a complete failure to rule out somatic causes — in other words, no testing to verify normal thyroid function and the like — and I shudder to think how many others are being misdiagnosed with mental illnesses they don’t actually have.
Turning back the clock 20-odd years, my first diagnosis, Major Depression, was spot-on at age 13. I recovered, but also medicated it into submission; I’ve never stopped taking antidepressants for fear the depression would return. But the nature of depressions that I’ve experienced since then are fundamentally different, leading me to believe I’ve been on drugs I didn’t need for at least 12 years, potentially handicapping my body’s ability to function without it.
My second diagnosis, Attention Deficit Disorder, was also 100% accurate, even though it was first made by a family doctor (the Internet thinks family doctors can only identify self-diagnosable ailments.) Over the next ten years, another 6 clinicians independently agreed, as did a computerized test, and stimulants help immensely.
But after that, things got weird.
My university health records list Anxiety Disorder NOS, which may well be accurate, but I’ve never been properly evaluated nor treated for anxiety disorders. A number of clinicians have also diagnosed me with Mood Disorder NOS, which is shorthand for “we have no effing clue.”
When everything really went to hell, I was diagnosed with Bipolar Disorder II multiple times. Apparently I just react very strongly to changes in sunlight and have an abnormally high tolerance for sleep deficit, since it now appears that they were all wrong.
When I finally got a decent psychiatric nurse, she suspected a hormonal imbalance. So I weaned off mood stabilizers with great success and started looking into endocrine issues. But to this day, the primary diagnosis on record at that office is Major Depressive Disorder, Recurrent.
In the meantime, another clinician stuck the Borderline Personality Disorder label on my records so my insurance would continue paying for Dialectical Behavior Therapy. That was a complete fiction, a nasty diagnosis levied solely because insurance companies, not doctors, dictate “appropriate” medical treatment in the US. Worse yet, insurance approval wasn’t actually required by my plan, so I’ve been given a stigmatized label that could cause problems in the future due to bad bookkeeping.
A reproductive endocrinologist took about 5 minutes to hear what he wanted before pronouncing a diagnosis of Premenstrual Dysphoric Disorder. He didn’t do proper diagnostic work, didn’t ruled out any other conditions, and despite conflicting evidence, put me on drugs that made me dangerously ill and even crazier. When I cried out for help, he generously offered to shut my reproductive system down entirely. I fired him.
After about two years of this rigamarole, I finally found an “alternative” women’s health option — personalized, evidence-based, and provided by an actual MD. She quickly confirmed my suspicions: I don’t have PMDD, and I’m only certifiable when my hormone levels tank. As it happens, there are specific genetic mutations for PMDD (Val/Val for Val158Met), and medication sensitivity testing already showed that I’m not in that category.
Carefully timed blood tests and sonography confirmed an infertility-related condition called Early Luteal Phase Defect, along with ovarian cysts. In short, my body produces far too little estrogen and progesterone of its own accord and my ovaries look like the Elephant Man’s testes. The shortage of necessary sex hormones creates psychological symptoms that look exactly like a severe mood disorder. The appropriate treatment — supplementing bio-identical progesterone for 10 days per month — is simple, low cost, and low risk, with minimal side effects. It’s also effective: my brain works, cramps are minimal, entire cycle is way more predictable, and emotions are far less extreme.
Thanks to one misdiagnosis after another, I’ve dealt with inappropriate and unnecessary drugs, constant invalidation, and the burden of believing I was insane. After struggling to accept life-altering diagnoses like bipolar and PMDD just to have those diagnoses overturned, I simply can’t trust medical professionals anymore.
There have been a few silver linings. Along the way, I learned that I’m a genetic freak and can’t properly metabolize most pharmaceuticals: information that could save my life someday. I also learned mindfulness and coping skills, worked out some issues in therapy, and recommitted myself to proper self-care. As a result, I’m a lot healthier today. There’s even a possibility of reducing or eliminating antidepressants that I probably don’t need.
But if you’re looking for a moral to this story, I’m afraid I don’t have one. You can consider it a cautionary tale of medical malarkey, but intuition and hindsight seem to be the only way to determine whether your doctors are as incompetent as mine. I can offer only this: if the cure is worse than the disease, you have every right to stop the course of treatment, find another doctor, get another diagnosis…and lather, rinse, and repeat.
© DeeDee and A Canvas Of The Minds 2014. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to DeeDee and A Canvas Of The Minds with appropriate and specific direction to the original content.