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Beware of misdiagnoses

Amy Cox is one of the courageous contributors to my 2022 bipolar anthology: Navigating Bipolar Country – Personal and Professional Perspectives on Living with Bipolar Disorder. She recently emailed with an update to her story, and kindly gave permission for me to publish it here on my blog.

“Merryl, I hope your [Navigating Bipolar Country] anthology has been a success.

“It turns out that I’m not bipolar and never was. I’m autistic and always was, and as you know, there’s a history of severe abuse and trauma in my family, which continues to this day. So what appeared to be “mania” was a stress reaction to abuse/trauma, and when l discovered this on my own, l told the psychiatrist I had been working with for 20 years. His reaction was nothing less than cruel and unprofessional: he refused to admit he was wrong, and he did not apologize for the many years of over-medicating me with unnecessary drugs, ECT [shock therapy], bad advice, and unethical therapeutic interventions, none of which ever helped, but did cause lasting damage. I had given him plenty of clues over the years and had always questioned the bipolar diagnosis myself, since it didn't seem to describe me at all. But as you might guess, doctors do not like to have their authority challenged.

“Although l did mention the term ‘Asperger’s’ in my original emails to you, that term is no longer acceptable to me due to its negative connotations, and l now prefer ‘autism spectrum disorder.’ (Note that autism isn’t a mental disorder at all—it’s a developmental or neurological disorder/disability.)

“When l realized this, l felt like a bit of a fraud, being in a book about bipolar disorder. But it’s my fervent and informed belief that there are many people in the world who are autistic and have been misdiagnosed by honestly ignorant practitioners, or by those who are just arrogant and cruel, as my particular doctor was.

“I now work as a registered pharmacy technician, and when l see some of the medication profiles of people, especially women, taking so many overlapping drugs, often at increasingly higher doses, I can’t help but wonder if they are like me, but it’s not my place to say anything.

“Still, l would like to thank you for your kindness in including me in your bipolar anthology, and perhaps now you have learned something from my experience that you can use going forward. And I do hope there’s no one else in that book who has also been misdiagnosed and is still suffering the consequences.”

I replied:

Amy, how great to see your name in my inbox today! Thanks so much for writing.

I’m so sorry to hear that you were misdiagnosed for so long, but I must assure you that you’re by no means alone, and you are by no means “a bit of a fraud”: it's part of the process. In fact, Chapter 5 in Part 1 of the book (Reflections by people living with bipolar disorder) is titled “From Missed Diagnosis to Misdiagnosis to Bipolar Diagnosis.” And then, some time after the writer finally got her bipolar diagnosis, she wrote to me to say that the bipolar diagnosis had been "removed" as the doctor no longer felt that she met the criteria for bipolar disorder...

So, nothing is simple or straightforward, it seems, and shifting diagnoses is a part of living with a mental disorder like bipolar.

But here’s a thought to help set the record straight: What do you think about me publishing your clarification as a blog post on my website? Obviously, not everyone who reads the anthology will read my blog, but at least some people will...

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Thanks as always for reading this, and for considering Amy’s caution about possible misdiagnoses. Have you ever been misdiagnosed, or had your diagnosis unduly delayed for some reason? Or, if you’re a clinician, has this issue of arriving at an accurate diagnosis for your client(s) plagued you? Please share in the comments below.


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Feb 27, 2023

I think it's important to highlight that diagnoses really can evolve. This is especially true in children and teenagers, who often get the "correct" diagnosis in their late teens or early twenties when serious mental show up. Prior to this, the same youths have often been diagnosed with such things as ADHD, anxiety, and depression. Then a major mood disorder and/or psychosis comes forth when the youth reaches young adulthood, the typical age when these serious mental health conditions manifest. The earlier diagnoses were likely the prodromal phase of schizophrenia, schizo-affective disorder, or severe bipolar disorder. Mental health diagnosis and treatment are evolving sciences, and it's very important to remember that this is the case.

Beverley Watkins PhD LCSW

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