I Built My Identity Around Being Bipolar. Then My Doctor Said I’m Not Bipolar

What happens when what’s wrong with you isn’t what’s wrong with you?

bipolar diagnosis

For years, Liz Spikol has defined herself by her bipolar diagnosis. But what if the professionals were wrong? Illustration by Jon Stich

My psychiatrist first floated the idea that I don’t have bipolar disorder months ago, when we were spending another session dissecting my history of disasters. That’s what you do in therapy, in case you’re not familiar — you take out your calamities and examine them, hold them up to the light until you can see them without shadow. Then, if you’re lucky, you fold their shiny sharp edges in tissue paper, place them in a box, and shove the box to the back of a shelf you can’t reach without a ladder. When all the boxes are on the shelf, you’re done with therapy, I guess. I’m not there yet.

But I am getting closer. It’s been 20 years since my last stay in a psych ward. My medication cocktail, which once involved up to 10 drugs at the same time, each trying to fix the sins of the others, is down to two. I haven’t missed a day of work due to mental illness for more than a decade. On the days when the boxes are especially well stored, I find it hard to remember what psychosis was like, or how it was that I used to spend days anchored to my bed, unable to move.

At one time, for a long time, I was so ill that I dropped out of graduate school, went on disability, suffered through shock treatments and punishing medication regimens. I talked to myself in CVS, walked in my nightgown to Wawa, then sat on the corner of 15th and Locust not understanding where I was. I had paranoid beliefs about cashiers and receptionists judging me; my mother had to call places ahead of time to warn them I’d be hostile. I saw cockroaches everywhere, skittering. Once, when I saw one for real, I killed it with a blowtorch and then stayed in my bathtub all night, blowtorch in hand, in case it came back to life.

Every day was a struggle, but getting better was almost worse. The medications I took were savage. One made me drool uncontrollably, so that the washcloth I held under my mouth would soak through in minutes. I frequently visited the ER for catheterizations when my bladder froze. Most meds made me voraciously hungry, so I’d gain weight until another pill took the hunger away and I dropped down to 85 pounds. One pill gave me tinnitus, and even though I stopped taking it years ago, the tinnitus is still with me, like a traveler who’s slept on the train well past his stop.

The medication I loved best, the one I believed was keeping me from the hospital and the self-talk in CVS, ultimately caused akathisia, a sensation not unlike hundreds of miniature earthworms in a downpour snaking quickly onto the sidewalk of your skin.

Yes, I know. It’s a lot of metaphor. Pseudo poetry is the only way I know to say what it was all really like without wanting to die, though I tried that, too — the dying thing. It didn’t take. As for the shock treatments? There’s no metaphor to describe what it feels like to open your eyes and not know your own name. “Who am I? I know I’m someone.” I’ll never forget that experience of forgetting.

But all of this horror, which went on for years, had an explanation — one I took dark comfort in.

And then, all of a sudden, it didn’t.

These days, you’re not supposed to say, “She’s bipolar.” You’re supposed to say, “She’s a person who’s been diagnosed with bipolar disorder,” which is less pithy but also less defining. But I can tell you with certainty that I was bipolar disorder for a long, long time.

Proof: For 10 years, I wrote a column and blog called The Trouble With Spikol that was predicated on its authorship by a bipolar person. I won an award for Best Bipolar Blog. I was featured in the New York Times as a bipolar spokesperson, based on my YouTube videos about — you guessed it — living with bipolar disorder. I was an unpaid shill for AstraZeneca and spoke numerous times about how one medication had tamed my bipolar disorder. I became a certified peer specialist and provided mental health services to other people with severe mental illness based on my bipolar diagnosis. I was on radio shows and TV specials. I was one of four people profiled in a feature-length film about people with bipolar disorder. The list goes on.

Once, I remember, a woman said something disparaging at a party about people with bipolar disorder. “I have that,” I said. “That’s me.” She looked shocked, which pleased me. It was like a delicious hors d’oeuvre, which that party was short on. I was constantly trying to upend stigma and stereotypes. Not just about bipolar disorder — I wanted to change perceptions of people with mental illness in general. But the bipolar disorder was the foundation of my activism and identity.

And then, a few months ago, my psychiatrist said he wasn’t sure it actually fit, that bipolar diagnosis. After almost 20 years of our doing psychiatry and psychotherapy together, my doctor sat back in the wing chair in his office and gazed at me across the river of his carpet, saw the sweep of my life, my calamities, and posited that they didn’t add up to bipolar or schizophrenia or any other biological brain disease, as he put it.

I hadn’t had a recurrence in many years, even after going off the antipsychotic medications I’d been on since 1991.

The truth was that I had become a person who, though neurotic and anxious (which is my Jewish birthright), was pretty much fine.

During the workweek, I took medication for ADHD, which helped me focus at the office — something that used to be difficult. At night, I took .5 milligrams of an anti-anxiety medication for sleep. When I first went off the antipsychotics, I kept waiting for the horrors to return, but instead it was like looking at a long stretch of train tracks glinting in the morning sun — nothing but the potential for movement ahead. A metaphor, not a hallucination! The absence of effort was startling. It also raised a lot of questions.

Much of medical diagnosis is guesswork, arrived at by a process of elimination. It might seem that there’s clarity, but at each step along the diagnostic path, there are questions that beget questions.

A doctor looks at urine under a microscope and sees bacteria. Is it truly bacteria, or clumps of dye or debris? If it’s an uncontaminated sample, is the bacteria the cause of the patient’s complaint? If so, what kind of bacteria is it? What antibiotics will it respond to?

Many illnesses do not have definitive clinical signs that indicate a particular diagnosis. There’s plenty of trial and error, and each year, it seems, we learn something new that changes what we thought of as medical gospel.

Psychiatry may be the medical field with the least precise diagnostic capacity, which has caused it to be fraught with controversy and subject, as all medicine is, to ideological trends and cultural prejudices. And it’s seen as suspiciously impressionistic, especially compared to the kinds of ills most of us are exposed to routinely — a broken bone, a cut that needs stitches, a bad cold. When you have a sore throat, you get a swab in the back of your mouth to find out if it’s strep or just “It’s winter in Philadelphia and my throat is on fire.” No one ever swabbed my brain for bipolar disorder.

The problems of the brain, of the mind, whatever that is, don’t yield so easily to investigation. Even after years of scientific advancement, the brain is a mystery, as those who study it will attest.

Yet psychiatrists don’t typically enjoy the characterization of their field as guesswork. In my experience as a patient, a mental health journalist, and a mental health service provider, psychiatrists can tend toward the strident when it comes to diagnosis and medication. They substantiate their decisions based on the Diagnostic and Statistical Manual of Mental Disorders, which changes with each new iteration. The fact of those changes isn’t necessarily an indictment; the Merck Manual has surely changed its section on ulcers now that we know they’re often caused by bacteria. But it’s the nature of the changes in the DSM that reveals some of psychiatry’s key challenges and that shows how culture shapes even seemingly rigorous scientific conclusions.

In the 19th century, we had the diagnoses of “drapetomania,” the supposed mental disorder that caused slaves to run away, and female hysteria, frequently ascribed to women who weren’t obeying their husbands. Being gay used to be in the DSM as a mental disorder; now, it’s not. That 1973 change had nothing to do with a Nobel-worthy discovery of wiggling bacteria under a microscope. It had to do with a brave group of doctors and patients who spoke out and fought discrimination, which is what that classification was about.

The definition of schizophrenia, the psychiatric illness that perhaps has the most credibility, as it were, as a biological disease of the brain, has morphed over the years with changes clearly inflected by social turmoil. In the 1960s, as shown in a study of a Michigan mental institution, it changed from a sort of split personality mostly affecting white men to a disease characterized by belligerence and hostility perpetrated by black men — at a time when black men were engaged in activism.

Diagnosis, guided by the DSM but also simply by individual practitioners affected by the society they live in, has been similarly inconsistent. Is it really true that first- and second-generation immigrants in places like the United Kingdom, hailing from disparate countries, have nearly three times the rate of schizophrenia that native-born white people there do, as a report revealed in 2005? Or are they just diagnosed as such due to life circumstances and implicit bias? Such discrepancies in rates of illness are even more distressing when the influence of Big Pharma is taken into account. If you ask me, the outrage about Purdue and the opioid crisis could just as easily apply to any number of drug companies that manipulated psychiatric diagnoses to result in overprescription.

The psychiatric diagnoses that patients are given tend to cling to them, necessarily, because they need a DSM code in order to have their health care covered. People who go in and out of hospitals or are in long-term treatment get saddled with these labels the same way prisoners become their inmate numbers. I remember working at a mental health program in the mid-2000s that fancied itself progressive. They never used the word “patient,” and they spoke relentlessly about recovery from mental illness — a message they infused with hope. Yet when the non-patients wanted to get career counseling, they were instructed to call vocational counselors who would answer the phone with: “Career Counseling, what’s your diagnosis?” That was the first thing they wanted to know about you: your label.

I tried so hard to get people to forget their labels, especially because any of us who have had multiple hospitalizations also have multiple diagnoses. I’ve been diagnosed over the years with the following: generalized anxiety disorder, major depression, rapid-cycling bipolar disorder, bipolar I, bipolar II, dissociative disorder, schizoaffective disorder, PTSD, PMDD, ADHD, and probably some other acronyms I’m forgetting. So it was a contradiction: You’d get stuck with one label that came to define you even as individual clinicians would vacillate on whether that label was correct.

For me, the label was both a professional advantage — I could speak for an entire population during a time when my diagnosis was especially in vogue — and a grievous limitation. After my parents and I participated in a Johns Hopkins study on heredity and bipolar disorder, I felt even more convinced of the biological underpinnings of my troubles — and thus quite apprehensive about having children of my own.

I also memorized and internalized all the stats about people who had bipolar disorder: My lifespan would be shorter; I was much more likely to die by suicide; the illness was chronic. Just the other day, I unearthed an old episode of Radio Times, the WHYY show hosted by Marty Moss-Coane, on which I was a guest many years ago, speaking about living with bipolar disorder. I cringed when I heard myself say, “If I went off my medications, I guess I’d have to live in a residential treatment facility.” I’d doomed myself to such a tragic fate, with such minimal potential. Now that it’s too late, I wonder: Could I have had children after all, and not passed along hereditary mental illness? Quite a sacrifice if the diagnosis was wrong.

I don’t have a neat bow to wrap all this up yet. I wish I did. I wish I had answers to all the questions that not having bipolar disorder brings up. Did I really need all those drugs I was taking? Were the drugs and the constant changes in dosages and protocols actually causing the supposed bipolar symptoms? What was causing psychotic responses if not bipolar disorder? Was it trauma from childhood and post-rape PTSD? Was it some other biological factor? Does it matter now what it was? Did I unknowingly mislead others with bipolar disorder and cause them to have treatment they shouldn’t have? Did I make life choices based on ideas of limitations that didn’t need to define me?

The list goes on.

And then, thinking of my psychiatrist, there’s the biggest question of them all: How do I know he’s right this time?

Published as “Poster Girl, Interrupted” in the November 2019 issue of Philadelphia magazine.