How Seeing My Mental Health Records Helped Me – and Didn’t

Is there anything to be gained from perusing your psychiatric medical records?

I’ve always wanted to be a nice patient. Even as a baby, I didn’t cry when the doctor set me on the cold, metal scale, I’m told. But last summer, when I spent several days in a locked psychiatric ward, I was put to the test like never before.

My main physician was well-regarded. (“She’s good,” said one nurse.) During our first appointment, in a quiet room off the main hall at Aurora Psychiatric Hospital in Wauwatosa, she ran down a long list of questions probing for markers of mental disease: Had I ever heard voices? Experienced visual hallucinations? Gambled excessively? Had suicidal thoughts? My mind swam.

I’d checked in with a diagnosis of bipolar disorder, which I’d received in 2013 after years of unsuccessful depression treatment, although I didn’t see myself as having suffered a manic episode, not particularly. A few other patients were clearly struggling in this way, including the man who wrapped himself in his bed sheets and went around seeking religious converts. My crisis, I thought, was mostly medication-induced.

One of the oldest and most ghoulish side effects of psychiatric drugs, particularly antipsychotics, is called akathisia, and it can vary from a mild, knee-bouncing restlessness to a hellish, suicidal dysphoria worse than anything mental illness alone has inflicted on me. I had gotten it, I thought, from a mood-stabilizing antipsychotic medication called ziprasidone that I badly wanted to work.

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But when akathisia’s overwhelming terror came crashing down – a feeling not unlike being buried alive, over and over – I quit ziprasidone cold-turkey and cut back on other medications. (I take several.) I think I unwittingly gave myself “discontinuation syndrome,” aka withdrawal, compounding the problem. Within a week or two, I was hobbling over to the hospital next to where I live with a wild look in my eyes.

In Tosa, my doctor restarted my medications, with some tweaks, and I stabilized after a few days, although akathisia hounded me, to varying degrees, for several months. While in the hospital, I felt positively tortured by inner distress, but I kept hearing from nurses and doctors that I probably just had anxiety – something that feels very different to me – and that a new antipsychotic might be the solution. (It wasn’t.) What worked were medications used for akathisia, one of which I still take today.

Wisconsinites have the right to request their own medical records, so I exercised that right. And as it turns out, the first doctor recorded that the akathisia began after I stopped taking the ziprasidone, not after I started taking it – an apparent miscommunication that made its way into a second doctor’s account of my case as well. As such, my record painted a picture of a bipolar patient who was “not compliant” with his medications (I had curtailed them) and suffered a blow-up in anxiety, agitation and restlessness – a very common occurrence – rather than an overwhelming, negative drug reaction.

Looking through the doctors’ reports stirred up some anger over the factual inaccuracies, but in the long run, I’m glad I did it. A large part of the horror and frustration of being mentally ill is the very common feeling that the mental health care system is indifferent to you, or capricious in its actions. Humanizing my providers and seeing where they’re coming from gives me hope and reminds me that I have people to rely on, even if they make mistakes sometimes, or I disagree with their conclusions.

As a psychologist once told me, “Diagnosis is fuzzy.”


This story is part of Milwaukee Magazine‘s March issue.

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Matt has written for Milwaukee Magazine since 2006, when he was a lowly intern. Since then, he’s held the posts of assistant news editor and, most recently, senior editor. He’s lived in South Carolina, Tennessee, Connecticut, Iowa, and Indiana but mostly in Wisconsin. He wants to do more fishing but has a hard time finding worms. For the magazine, Matt has written about city government, schools, religion, coffee roasters and Congress.