by Terri Cheney
I wanted to throw champagne in his face, but it was vintage and he wasn’t worth it. But I wondered as I drove home, wiping off tears, He’s a doctor, and I’m not. Who am I to contradict him? Maybe he’s right, and I’m just making things up.
Self-doubt is poisonous—but when it spirals down into self-stigma, it can be deadly. Whole organizations are devoted to fighting stigma, but it’s very hard to fight our own selves. I know, I’ve tried. When people question my bipolar disorder, they trample my reality. Even when I know they’re wrong, it sets off a chain reaction of confusion in me. My self-confidence begins to crumble as I question my own veracity and my hard-earned belief in my illness.
I must be a liar, I tell myself. I must be pretending, to get attention. I’m a horrible person who doesn’t know the truth from a lie anymore. The only thing I know for certain is that I’m somehow at fault for being me. If I truly wanted to be stable, I could because it’s all just make-believe.
But it isn’t. It’s real, so real. That’s what I always say when depression hits: “It’s so real.” I say this with a shake of my head and wonder in my voice because I simply can’t believe how palpable the pain is. It’s not only in my head, it’s in my bones—my whole body aches with sorrow. I find this oddly comforting. It shows I’m not just a wimp who can’t cope. I’m not a malingerer. It’s not because I Googled “depression” one too many times. It’s real.
And yet—on a day like today, when the happiness rabbit pops up unawares and I doubt that I was ever ill, I have to stop and email my therapist.
“Am I really bipolar?” I ask, for the umpteenth time in our relationship.
“Yes, you are,” he writes back.
“Are you sure?”
“Yes, I am.”
“Cross your heart?”
“I swear.”
I’m convinced for the moment, but for that moment only. So I send myself a message for the future: “Note to self: it’s real.”
YOU MAY SOON BE UNREMARKABLE
A few years ago, when actress Catherine Zeta-Jones announced that she was bipolar, a frenzy of publicity erupted. That evening it was one of the lead stories on the NBC Nightly News, the nation’s most popular news broadcast. I remember this because that morning a swarm of Nightly News cameramen had descended on my house. For several hours a reporter had earnestly interviewed me about “what it’s really like to be bipolar.”
I felt rather important and at the same time extremely weird, like I was a space alien asked to describe the customs and culture of my home planet. I did my best to explain the different mood states I travel through and the impact the illness has had on my life. I wasn’t in top interview form that day—I was coming out of a depression and cursed the absence of my manic eloquence. But the reporter seemed very happy with the material he got. It wasn’t until after the camera crew left that I realized why I was feeling so blue: because bipolar disorder was still considered big news.
I do want the illness to get as much attention as possible, from as many sources as possible. That’s the way to more funding and research and hopefully, one day, a cure. And of course, it can be very valuable to witness other peoples’ disclosures, so we don’t feel alone. But I don’t want bipolar disorder to be considered newsworthy because it’s so bizarre. For every sober Nightly News interview, there’s a flurry of tabloid exploitations, and God knows how many cyberspace atrocities. I look forward to the day when the condition will be so well known and understood that it borders on the mundane.
Another celebrity with bipolar disorder? Yawn. What else can we cover?
People from all across the country are eagerly waiting for that time to come. I constantly hear from bipolar readers how frightened they are that “someone will find out.” They’re certain they’ll be fired or ostracized or no longer loved, so they hide an essential part of themselves from the world. These people live, not in a closet, but in a shoebox: stuffing their personalities into dark little fissures where enlightenment can never shine.
But then it happened: not too long ago, Zeta-Jones was in the news again. I barely caught the story. It was just a blip on the evening news—a photo of the actress, looking stunning as always, followed by a quick blurb: she was going to be hospitalized for “proactive treatment” of her bipolar disorder. Then the news moved on to the Middle East.
I wondered what proactive treatment was, and whether I could get it. Then it struck me—wham! pow!—how exceedingly short the whole story had been, if one could even call it a story. But why? Zeta-Jones was just as big a celebrity as she ever was. Yet this time around her bipolar disorder was treated more like a factoid, with a very pretty face attached. No reporters had called me for background material that day. Apparently no one wanted to go deep, as they say.
Because I used to work in the entertainment industry, I have some sense of when a story is hot, and when it’s no longer a story. A few seconds on the nightly news constitutes interest, but the prurience of that interest is clearly waning. Maybe this means that being bipolar is not such a big deal anymore? Maybe people are getting used to it, and the stigma so many of us have had to endure all our lives is finally starting to lessen. I sincerely want to believe that. I want to be able to tell the people who write to me with such fear and distress: hold on, be patient, just wait. The end may be beginning, and you may soon be unremarkable.
TERMS AND DEFINITIONS
“Words are, of course, the most powerful drug used by mankind.”
—Rudyard Kipling (1865–1936)
“The misuse of language induces evil in the soul.”
—Socrates (469–399 BC)
Mental illness is slippery and often defies comprehension. It’s full of shadows and phantasms and inchoate feelings that need words to give them shape. Not just clinical terms, but everyday language that reflects everyday experience. And yet so much speech about mental illness is constrained. Sometimes it’s the fault of political correctness (which has its place, except when it impedes clarity). Or the blurring intent of pharmaceutical agendas. Or, sadly, a lack of empathy and just plain fuzziness. Whatever the reason, imprecision and careless choices are dangerous to us all.
Celebrity suicides have highlighted that danger. After the extensive media coverage of Robin Williams’s death in 2014, suicide rates spiked by 10 percent—a phenomenon called the Werther effect, which is essentially a technical term for copycat suicides and suicide contagion. This led experts to reconsider the rules of reporting, resulting in changes in the Associated Press Stylebook. It now cautions reporters not to explicitly describe methods, use graphic images or language, or otherwise sensationalize a death; and to provide resources to readers and, if possible, hope.
Some countries, such as Norway, don’t report suicides at all in order to avoid any harmful consequences. But this seems to be taking prudence too far. Contrary to popular belief, a study by the Department of Psychological Medicine at King’s College London found that simply talking about mental illness and suicide does not implant risky ideas in people’s heads (https://www.ncbi.nlm.nih.gov/pubmed/24998511). Not talking about these subjects only intensifies stigma, impoverishes our language, and discourages people from seeking help.
Hard as it can be to open up about sensitive emotional issues, it’s imperative that we do so. Men are four times more likely to kill themselves than women. It’s impossible not to wonder how much of this tragic statistic is due to the stereotype that men are supposed to be strong—and silent.
CALL IT WHAT IT REALLY IS
One in five Americans is on some kind of psychiatric drug, mostly antidepressants. So all of you out there, dutifully taking your Paxil or your Zoloft or whatever, let me ask you: Do you know how hard it may be to go off it, should you ever want to? Did your doctor explain the risks when he dashed off that prescription, on the way to his next patient? Did you ever think to ask?
I didn’t, which surprises me because as a lawyer, I’m naturally suspicious of all new developments. So every
time my doctors prescribe a new drug, I whip out my legal pad and start taking notes. I ask what I can expect to feel, the possible side effects, interactions with food and other drugs, etc. I don’t stop the interrogation until I feel satisfied. Then I go home and look it up online, which may or may not be such a good idea. But at least I tell myself I’ve done my homework before I pop that next pill.
I never think what might happen if I someday want to stop taking it. I’m too eager to be fixed, to be cosseted and soothed by the mighty magic that lives inside that tiny capsule—that symbol of hope and transformation. It’s like starting out in a new relationship: you don’t even think about the possibilities of divorce.
You should. Divorce is a messy business.
I’d been taking an expensive new antidepressant for about six months, with no discernible impact except on my checking account. My psychiatrist and I agreed we’d given the pill a fair shot, and its time was over. I started feeling sick three days after I reduced the dose. I’d only gone down a little bit because I knew that you should never, ever stop any drug abruptly. Ideally, you should slowly taper off in compliance with your doctor’s directions, to give your body a chance to adjust to the change. Which is exactly what I did. Nonetheless, I felt woozy and nauseated, and when I tried to get out of bed, I fainted. Then the chills started, followed by a fever and copious sweating.
Definitely the flu, I thought, and I continued to go down on the drug. But every day I got sicker, until finally I couldn’t keep anything down, not even water. Weeks passed, then a month, then two, and still I felt no better. But it never once occurred to me that going off the antidepressant might be the culprit. I didn’t even think to call my psychiatrist because this was clearly physical illness, not mental: the province of my internist, gastroenterologist, and endocrinologist, although all of them were baffled.
Finally, when I found myself growing suicidally depressed, I called in my psychiatrist. He chided me for not calling him sooner. The medical term for what I was going through, he said, was “serotonin discontinuation syndrome.” Serotonin is a brain chemical that may be implicated in depression, and antidepressants increase its availability. So when you go off an antidepressant, the amount of serotonin in your brain diminishes, and this can cause all sorts of nastiness. I read up on it: physical symptoms include problems with balance, gastrointestinal and flu-like symptoms, and insomnia. Psychological symptoms include anxiety, agitation, crying spells, irritability, and aggression. Some studies also reported “zapping” sensations in the brain, headaches, tremor, fatigue, and problems with vision, among numerous other things. In other words, pretty much anything that goes wrong with your mind and your body could be a result.
With the help of a magnifying glass, I scrutinized the teeny-tiny patient information pamphlet that came with my medication. Despite an alarmingly long list of side effects, there was no mention of “serotonin discontinuation syndrome” or of any of the problems inherent in reducing or stopping the dose. Getting angry at the drug company helped me a little. I was less angry with myself, at any rate, for not having asked the right questions of my doctor, and for my naive belief that prescription drugs aren’t every bit as dangerous as street drugs.
But shifting the blame didn’t lighten my symptoms. Nor did my doctor’s admonition to be patient. Lying inert in a fetal position, unable to eat, sleep, write, or make any social commitments, I finally had to admit I was licked. My psychiatrist prescribed a different antidepressant to get me through the worst of the discontinuation syndrome, and gradually I started to feel more like myself.
I’ve had a lot of time to reflect on this experience, and I think in the end what upsets me the most is the misleading terminology being used to mask a significant, potentially life-threatening problem. While I was retching and shaking and passing out, I looked very much like one of those pathetic characters in a grainy 1950s film about heroin addicts kicking their habit. That squeaky clean clinical name “serotonin discontinuation syndrome” did nothing to capture the shame and degradation I felt for being so dependent on a drug. I really hate it when words don’t work.
So it was some small comfort to discover in my research that “serotonin discontinuation syndrome” is a relatively recent term. Get this—it was coined at a pharmaceutical convention in 1996. Before that, what I went through had a very different name: It was simply called “withdrawal.” The old words often work best, it seems, before they’ve been polished and prettified. “Withdrawal” would scare the hell out of any of us, and it’s good to know when to be scared.
VAGUELY BIPOLAR
There are few things more frustrating than trying to describe the state of your mental health to someone else. It’s amorphous and abstract; it defies pinning down. Clinical terms are practically useless—although, of course, you need to know them so that you and your doctor are on the same page. But they take a one-size-fits-all approach, which ignores the nuanced nature of my moods. I mean, come on: What is a “mixed state,” anyway? Why can’t I just say, I’m extremely agitated and mad as hell and I hate myself and you? Wouldn’t a doctor get a clearer picture from that? Textbook speech is fixed and dry, and I’m a living, constantly evolving creature.
The right words at the right time can make all the difference, in unexpected and spectacular ways. Some of the best sex I ever had was with a young man I met in college, who was a dual English and premed major. He knew the precise names of all sorts of things I’d never dreamed existed. Up until him, the only sex-related word I knew was “no.” But he gradually introduced me to the language of love, and his lessons made me delirious. Actually, at first they made me blush; then came the delirium. Since then, I’ve come to appreciate how essential it is to have le bon mot at hand.
But even though I’m a writer, the perfect description often eludes me, especially when it comes to my mental health. For example, right now I’m perched on the edge of a mood avalanche, for lack of a better term. I can sense that my world is about to change, but for the life of me I don’t know in which direction. All I’m certain of is that the shift will be cataclysmic. And it’s hard to explain this to anyone who’s not bipolar, in a couple of curt or clinical phrases.
Like this morning—a good friend asked me how I was feeling. “Good,” I said. “Fine.” What I really wanted to say was something like, “You know that feeling when you walk into the ocean, and the sand begins to erode beneath your feet? It’s exhilarating but scary because your balance gets tricky and you realize you’re in the grasp of a force that’s so, so much bigger than you. That’s how I’m feeling, and that’s what it’s like to be bipolar, when your sanity starts to slip away.”
But I didn’t want to impose, and I didn’t want her to think I was weird—I know most people don’t live inside metaphors. Even here in Hollywood, the land of the well-spun story, people want to hear quick, to-the-point phrases they can easily understand. They want the elevator pitch, the beat sheet, the log line. It’s a lazy way of listening—and besides, I don’t have fast, easy summaries most of the time.
This isn’t just wishful griping. A proper description is essential for the right diagnosis and treatment. How are we supposed to help our doctors care for us if we aren’t given the time and permission to adequately express what’s wrong? How can we recognize our symptoms and triggers if we can’t explain them fully and clearly? The correct words aren’t just empowering, they give you instant street cred, which is a nice thing to have when you’re a mental health consumer.
So I vote for a vocabulary revolution! Let’s ditch the one-word diagnoses and tell our doctors and loved ones how we’re really feeling. This will undoubtedly require more than just a neatly packaged term or two from the DSM-5, which may make your pressed-to-the-minute doctor squirmy. But enough of the white coat worship. Sometimes you need a bit of a narrative, a glimpse of a story—“This is what happened to me today, and this is how it made me feel”—to make yourself understood.
I think the people wh
o really care for us will be willing to listen because their level of frustration probably mirrors our own. They want to know how we experience our world, and I’m sure it’s as hard for them to feel shut out by language as it is for us to feel so hemmed in. Let’s allow ourselves to be heard and be truly seen. Let’s claim all the orgasmic power that comes with knowing—and saying—just the right words.
SPITTING ON P.C.
I was invited to sit on a panel at the USC Film School. The topic was Mental Illness and the Cinema. My fellow panelists were filmmakers; the moderator was a psychologist. I was the only person, I realized as I took my chair on the stage, who was mentally ill (or at least had admitted to it). I was the voice of madness. To do justice to the role, I tried not to look too composed—which wasn’t hard because public speaking always makes me anxious.
The filmmakers had all made feature films or documentaries about some form of mental illness: depression, bipolar disorder, schizophrenia, etc. This being ultra-liberal Hollywood, the topic soon turned to political correctness. The moderator asked the filmmakers if they’d had trouble with the diagnostic labels they’d placed on their characters. “That was one of the hardest things I had to deal with,” one of them replied. “I didn’t want to stereotype anyone.” Another said, “I hated to use a diagnosis because it narrows the actor’s range.” Labels are bad, they all agreed. They harm people more than they help. The moderator concurred, saying that labels reduce the world to a cluster of symptoms defined by the DSM (the psychiatric bible).
The room glowed with that warm, we’re-all-good-people-here vibe that sometimes comes over these events when everyone seems to be in accord. I was twitching in my seat, eager to speak yet keenly aware that I was a minority of one. But I couldn’t help it, I’ve never been able to keep my mouth shut when I have a strong opinion.