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Personal Accounts: In Good Hands?

Published Online:https://doi.org/10.1176/ps.50.10.1279

I didn't send a Happy Holidays newsletter last year. Instead, the demons of my chronic mental illness got the best of me. After many years of being "well," I was hit by the depressive side of manic-depression (bipolar disorder)—hit hard enough to send me, suicidal, to the hospital.

Asking for help has never been easy for me. I usually feel it's a demeaning confession of weakness; maybe no one will take me seriously; maybe the answer will be "no." I usually wait until the very last, desperate moment. When I finally called my doctor, he arranged an emergency admission. That is, the powers that be decided it was, in fact, an emergency. Next year, should the need arise, it will have to be declared a "medical emergency."

Admission (to me a shameful occasion) was hard enough. Being discharged was another matter. After five days, the health maintenance organization (HMO) covering my mental health care ruled I was no longer "sick enough" for further inpatient coverage. Ready or not, I was out. Out to the "least restrictive environment": that meant the day hospital, outside therapy groups, individual outpatient therapy—anything but the inpatient setting where I would, of course, cost more. Apparently, once I was "over" the immediate suicidal crisis, it was time to "help" me to the door.

With my HMO I had agreed to the short-term plan from the beginning. I just didn't know how short. I thought a week would be enough time. I knew what I needed. I needed the temporary, "wrapped-around" kind of care given a child who longs for comfort and for safety from everything outside that has been hurting too long, or has fallen apart.

I needed help with the chaotic emotions that had temporarily taken my adulthood from me. I needed relief from the periodic mental illness that wasn't my fault. Without that relief, at certain times in my life I could die.

In the hospital, the safety was there, along with the relief, the nurturing, the caring. The staff and the program on the psychiatric unit were excellent: professional, humane, and human. I could trust them. It was myself I didn't trust. My feelings had told me to come into the hospital. Now they were telling me it was too soon to leave.

In this safe and structured setting I was slowly learning about my long-shut-off feelings. I began to believe it was OK to cry. It was a fragile teaching-learning situation, not ready for arbitrary interruption. I thought maybe I could really get control of my illness this time, and learn to manage my life around it better, if I could feel "safe" long enough. Not long, but long enough.

In an affective illness such as bipolar disorder, emotions often overrule intellect. When I'm sick, I'm too sensitive and frightened and vulnerable to check out my emotions with reality. No one taught me that feelings were normal or that I wouldn't be punished for them. Instead, my distorted feelings may lead to disordered behavior and thinking, poor judgment, or painful relationships.

It's hard to identify my feelings, and much harder to express them. It's easier, safer to stuff them inside. But that's not a good idea; rather, it's a sick adaptation to a combination of things in my life.

Feelings and emotions are such a nebulous area. Mental illness is so complex and elusive. How can HMOs be in touch with the subtleties necessary for learning to live with this kind of disability? In an inpatient setting, the "safety factor" for patients is more than a physical issue.

Who decided on five days for me? Someone using a chart of statistics, far removed from real people who feel the real pain of mental illness? Or DSM-IV? What criteria were used to determine the extent of the inner pain that shifted my biochemical balance and made me feel suicidal? How many days does it take to dissolve the self-hate that accumulates after 20 years of verbal abuse? How many days is enough to grieve the loss of a son to drugs and crime?

Where does a 20-year doctor-patient partnership fit in the decision about number of days of hospital treatment? Isn't competency considered here? Have I had too many prior admissions? Too many because my doctor arranged them, or because I'm not supposed to get "sick" too many times with a chronic disorder?

Is Big Brother in some faraway office pecking on a computer to decide it's more cost-effective to let medication and the outside community take care of me? At least until the next time my illness presents a "medical emergency"?

Apparently I'm too ill to make this decision, but not sick enough to stay a few more days. This situation leaves me and my doctor in a kind of limbo. Just as I know when I'm too close to dying, my doctor and I should know when I'm ready to begin living again—to leave the safe cocoon of inpatient care.

As an incentive to give up that inside security and rejoin the outside community, several services—again, time limited and predetermined by insurance coverage—were made available to me: partial (day) hospitalization, "intensive" individual therapy with my psychiatrist, and outside groups.

But unfortunately, I really had no choice. I could have taken sick leave to stay in the hospital a few more days, but once I was out, I had to go back to work. My work schedule didn't allow time for the extended absences that services like partial hospitalization or therapy groups would require.

I hoped I could fool people into thinking I was OK. But I wasn't OK. My moods leapt up and slid down daily. I was terrified of everything and everyone, sure that my "ex-patient" status and my symptoms would show. Worse, I was terrified that I'd screw up.

Fortunately, or maybe not, my illness allows me the blessing of partial concealment. I often appear more well than I am, and I'll tell people "I'm fine" when I'm not. What's "acute" in an illness that doesn't show? What's "critical" that hides inside? Do the mental health HMOs know more about bipolar disorder than I do? Do they have a high-tech x-ray machine that enables them to see how sick I really am, a Psych-Sick Detector? Or maybe there's an HMO spy-guy on the psychiatric unit, getting the real scoop.

This, of course, is not really funny. What can I do? I'm told I should write my legislators and get my union to act. That seems small (and slow) comfort. Am I strong enough to fight the army of big business and the stigma? Who can I trust? Who cares how I feel? How much suffering, how many suicides cost the "right" amount?

I'm reminded of a time when I was eight years old. I'd had a nightmare and woke up really scared. As if that weren't enough, I was sure the creaking on the stairs meant someone was coming up to hurt me. I struggled with fear and shame. Finally I called out.

"Don't be ridiculous! It's nothing!" my father yelled from across the hall. "Go back to sleep. You're disturbing everyone!"

Apparently asking for help is still hazardous. Validating serious mental illness seems to have become some stranger's job. But from time to time, I still hear the creaking on the stairs.

Ms. Kiefer is a former elementary school teacher and has worked as a mental health assistant at a Connecticut state hospital for the last 16 years. Her address is 77 Burgundy Hill Lane, Middletown, Connecticut 06457. Jeffrey L. Geller, M.D., M.P.H., is editor of this column.