Monday, November 2, 2009

Misdiagnosis - Patients Tell Their Stories

I write a very different blog on HealthCentral's BipolarConnect. There, I take a backseat to my readers, bipolar patients and loved ones. Nearly a month ago, I asked them:

Were you misdiagnosed with depression or something else? How long did it take before you finally received the correct diagnosis?

Readers began telling their stories over the next days and weeks, which I assembled into three blog pieces. The narrative is sobering and instructional:

"Jane's" response is fairly typical. She was diagnosed with depression at age 16 and prescribed Zoloft, “which was making me like a bunny on mass caffeine consumption.” She was put on Paxil, but her depression worsened and she gained 40 pounds. Unable to hold onto her job, she found a new doc, who “cocked his head, asked about my family’s mental health history ... and asked me ‘Did anyone ever ask you if you thought you might be bipolar?’"

Finally, on Lamictal, she has her life back, but "I spent 11 years on the wrong meds and destroying my life because I was misdiagnosed.”

What is coming in loud and clear is that a misdiagnosis of depression is all too common, with years on antidepressants that only worsen one's unrecognized bipolar. Since we tend to seek help when we are depressed rather than manic, it is not surprising that we receive the wrong diagnosis at first instance. But then the problem is compounded by psychiatrists who refuse to listen. As "Rachel," who waited 14 years for the correct diagnosis, describes it:

My major complaint with this whole debacle is not that I was incorrectly medicated, it is that I was incorrectly medicated because an entire comprehensive mental and physical inventory was never taken. AKA no one ever TALKED to me about what I was feeling and why I was feeling it. No one had mined my data for facts and established a clear pattern of my behavior. The first person who did that was me. ... They didn't do their job. Much like getting a bad mechanic job, my tranny dropped out on the freeway and my vehicle hit the wall going 75 - a complete loss.

Doctors who don't listen - that has been by far the number one complaint I have received from readers ever since I began writing about bipolar more than 10 years ago. As "Lorraine," who suffered with antidepressants for three years, writes:

The doctor (as many are) was a know-it-all and rarely listened to me. The doctor rarely considered how I felt. The doctor thought no one could ever know more than this one. The doctor rarely even considered the possibility of what I was feeling.

Why does it take so long for doctors to get smart? "Georgine" responds: "I believe it was because I was diagnosed with [depression] before so instead of trying to find out what I needed, the docs took the previous diagnosis and just agreed with it."

It took 25 years before a doctor finally corrected the original error.

And this from "Eva":

It was only when I got old and ugly that a doctor finally said, ya man, she's depressed, and she's bipolar. ... When I was young, beautiful and well-groomed, I looked like a female high-powered executive. On top of the world to the doctors who saw me. They dismissed my claims of depression, as ridiculousness. What does she have to be depressed about? Now that I'm old, ugly, unfashionable, I'm believable.

Our own ignorance and denial is another factor. As "Lilly" reports: “I stayed in denial successfully with alcohol and pills.” At last, during her third hospitalization, “I finally opened up a pamphlet on bipolar.” She took her meds as directed, and “was able to see reason. ... I’ve been struggling with this disease for over 25 years since I had turned 16 years old and I was 40 when I excepted it as something I would have to live with and take care of for the remainder of my life. Life is good now.”


There is no substitute for listening to real accounts from patients and loved ones. You can check out the full conversation at Bipolar Connect in the comments to my original question and a follow-up question, as well as my three pieces and the comments to these pieces:

Misdiagnosis - Eight Readers Tell Their Stories

Misdiagnosis - The Dialogue Continues

Misdiagnosis - Readers Tell Their Stories

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