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Why I spent 8 years on Malcharist, a novel about akathisia

By: Paul John Scott.

I am a health reporter. I don’t have akathisia, but I recently wrote a novel about it. I used to write for magazines, and now I write for newspapers.

Here is a little bit about my background. Health reporting is a busy line of work these days, but I only got into the field by accident. One day, after I got my first job at a magazine, 25 years ago, I met a health editor who had a desk near mine. We hit it off, and he started giving me health stories to write. The rest as they say is history.

I grew to like reporting on health, for the most part, because health is not only at the center of all of our lives, but I learned a lot of practical information. Over the years, I have reported on cholesterol, heart disease, back problems, cancer, knee surgery, drugs, training, dehydration, dental and skin care. I have reported on the unpopular side of topics ranging from nutrition to radiation to seasonal allergies. I have won awards and I have had doctors yell at me and I have had editors tell me I had to rewrite an article six times.

In all of this work, however, I have never found a topic as personally troubling or as professionally challenging as akathisia.

For starters, no one knows about akathisia.

I must have written about health and fitness for a decade before I first heard the term. I only came across it in 2004, while reading a book by David Healy called Let them Eat Prozac. It showed up on page 14, now that I pull my copy down from the shelf and check, in a section on the earliest history of drug-induced “depression.” Healy had listed in that chapter a series of early case reports from the 1950s of people reacting badly to a drug. They were all taking a medication for hypertension at the time, a drug called reserpine.

Something about that secret in the medical literature grabbed me, and over the ensuing years, learning all that I could about the history of akathisia became kind of a side project for me. I can’t tell you how many doctors I had interviewed in that time who grew quiet when I mentioned it. Many had never heard of it. But I would eventually track down all of those studies Healy had cited myself, and even managed to locate and interview one of the last living authors of one of them before he died. He didn’t understand the mistake at the heart of his finding, even all these years later. He called akathisia “depression,” too.

Healy called this mistake “one of the greatest mistakes in the history of psychopharmacology.” He was referring to the way in which American doctors in the 1950’s began to notice patients becoming agitated and apprehensive on a drug, with a feeling of strangeness and weepiness and despair, a set of symptoms they had labeled then, as so many doctors do now, “depression.”

“This is not depression,” as Healy wrote.

A few years later, I met a woman named Kim Witczak whose husband had taken his life during a bout of restlessness after going on an SSRI for insomnia. By then I had already traveled to Bethesda, MD, where I met met families waiting to testify about the loss of a husband, wife or daughter after taking a medication, their personalities having changed very quickly. Over time I began to read testimonials by people suffering from akathisia on a variety of internet message boards, some of them recollections I can still quote all these years later, they were so precise and odd in their detail.

I didn’t speak with anyone who had akathisia until a number of years after that, but I will never forget the hour we spent in conversation on the phone. He lived in Florida. I met him while reporting on sexual side effects of SSRI’s. He calmly began to describe for me how his life had been upended by a chance bout with akathisia — how his entire experience of being alive had shifted into a distorted dimension after going on a medication, with his insides seeming to vibrate, a feeling of electricity within his body producing periodic zaps in his brain, with the fear of another one coming almost worse than the shocks themselves.

He eventually pulled through. I don’t remember how. He seemed uninterested in convincing me, or even of being written about, in other words, he seemed entirely credible.

For me, the idea that any medication could unleash this upon another human being was a story I couldn’t let go. The idea that these medications were often given by doctors and nurses purporting to treat mental illness only made the event worse.

The idea that a doctor would decline to make the prevention of akathisia among their highest priorities as prescribers was unimaginable.

My new novel Malcharist is the story of a reporter and a medical ghostwriter who attempt to bring akathisia out of the shadows, and in so doing, encounter the resistance of patient groups, drug makers and powerful physicians. It is a novel about a fictional drug and fictional drug maker, but it is also about the real story of the earliest confusion over akathisia.

A word of warning: The novel opens with a scene depicting akathisia, as seen from inside the mind of a person who has become a danger to himself. It does not end well, this chapter. Reading this scene might be hard for people suffering from akathisia. I am told by some readers that they had to put it down for that reason. I am also told that it seems realistic, which is surprising, because I have never experienced akathisia myself. But people with akathisia, I have learned, can describe for you what they have very well, if we listen.

I only put this scene at the beginning of my book after talking with several readers who thought that waiting to show the reader what akathisia looked like was missing an opportunity to get their attention fast. Later, another character in my novel develops akathisia, but his story ends differently.

While I am sad to hear I have written a scene causing distress, I am also hopeful that the novel will help. With so much confusion over akathisia, and with so many doctors thinking it is simply a variant of depression, I knew the reader had to understand why it mattered, and why it was so very different from depression.

The ability to dismiss akathisia as depression has caused untold suffering, and until the public can talk about it as a product of the pharmaceutical age, the help that is needed will be delayed. I hope I can be part of that process in writing Malcharist.

Paul John Scott

Paul is a reporter and writer who lives in Minnesota. His work has been published in the New York Times, The New York Times Magazine, Men’s Journal, Outside, Details, Men’s Health, Cosmopolitan, Ski, The Columbia Journalism Review, The Star Tribune, and The Fargo Forum.

This Post Has 2 Comments

  1. Vincent

    Hello Paul,

    I am from Canada. I think bringing awareness to this horrible side effect from prescribed drugs is important. I never never knew about any of the dystonia’s and have taken my movements and thoughts of wanting to end my life everyday thinking it was coming from PTSD, CRPS, anxiety and depression. I then found out I had all three: Tardive Dyskinesia, Akathisia and Tardive Dystonia in my face all from side effects from anti-depressants to anti-psychotics. I’m trying to persevere on promises I recently made last June, 2020, to my Psychiatrist, Doctor, my sister and best friend that if I begin to make plans to hurt myself I am to tell someone as I do not want to give my hell to go to my kids. That was to get out of the psychiatric ward.
    I have come to the acceptance of what I have and can only try to slow it down as I am going to progressively get worse over time.

    Thanks for putting your book (I have not read but do understand the condition as I have it.) as it will bring awareness of a terrifying side affect you do not want to have all because of an anti-depressant or anti-psychotic.

    Thank you,

    Vince

  2. Jean

    Thankyou Paul, I will purchase your book to read and share with others. I am a health practitioner and I have never heard of Akathisia until today (I had probably come across it in the past but either didn’t pay attention or thought that it was so rare that I didn’t need to pay attention) – although now I am aware of it, I can say with certainty that I have seen it numerous times in clinical practice and now sit here with the guilt of knowing that I did what most others do, diagnosed it as a worsening or development of depression/anxiety. I failed to listen and thought I knew best. When we know better, we can do better. Another one of those “rare” conditions that isn’t so rare once your eyes are opened. Thankyou again.

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