When I was ten, I loved a science-fiction TV show called “The Prisoner.” I was too young to fully understand it, but one chilling part of the story involved a huge black sphere that rolled out of nowhere to pursue the escaping prisoner. It was relentless and horrifying. There was no getting away from it; the prisoner was always consumed. That’s what depression feels like to me, and this summer was the worst episode yet.

For many weeks, I didn’t even realize what was happening. I felt totally drained of energy, but I was used to fatigue; I’ve had AIDS for nearly nine years. But there were other symptoms, too. I ruminated endlessly on my failures-trivial encounters that were painfully embarrassing, pain and weakness that made activities difficult-nearly everything that was wrong in my life I automatically labeled “a failure.” It’s a life-long habit. As the episode wore on-it seemed to swell like a blister-I could barely get out of bed in the morning. But I had to force myself in order to take AIDS medications on time. Otherwise, I might have stayed in bed late into the day.

Clinging to Normality

The diagnosis of AIDS didn’t precipitate a depressive episode. I’ve suffered (and I don’t use the word lightly) with depression or dysthymia since childhood.

Mood disorders ran in my family. My paternal grandfather and uncle were both alcoholics (often a way to self-medicate depression). My paternal grandmother had some kind of breakdown in her sixties. My mother apparently spent most of my 4th year in bed, getting up only in the evenings when my father came home. And the disease spread to the next generation: my older brother has been variously diagnosed with depression and bipolar disorder, and both of my brothers are alcoholics.

I too coped with depression by drinking, beginning at the age of 12. I was a painfully shy and lonely little girl who was full of anger and self-hatred. Alcohol was a wonderful drug for its ability to soothe my over-active nervous system while giving me the energy that depression stole. And for the next 25 years, I “passed” as (relatively) mentally healthy. I still had a terrible temper, but I was mostly enthusiastic, active and productive. I earned excellent grades in school and graduated college with honors. I moved up easily in the corporate world. And yet inside, I always lived in hell.

Strangely, when I found out I had AIDS, it was such a shock that it somehow pushed the depression to a corner of my mind. I’d always been physically healthy-that much I counted on. I’d rarely even been sick with the flu. I’d never injected drugs, and had been married monogamously for 13 years. But suddenly in 1995 I developed an AIDS-related pneumonia-and not just HIV, but AIDS. (I quickly realized I’d contracted the virus from a boyfriend in 1982; my husband remains HIV-negative to this day.)

The diagnosis was such a shock that I thought: “If I’ve been wrong for 13 years about being so healthy, maybe I’ve also been wrong about being a “rotten person.” I felt I was being given a message, that my whole life was somehow a spiritual challenge. And so, like all those death-row inmates who find God, I “became spiritual.”

When Faith Fades

In 1999, I went on permanent disability from my job. Since then, I’ve tried to “make myself useful” by doing volunteer work or selling crafts I make. But over time, activities have become more and more stressful, even overwhelming. This summer I began to think that my health had deteriorated to the point where I really couldn’t do much more than water my garden, put a load of laundry in, or wash the dishes-and by now, even those chores were often beyond my ability. I had constant digestive problems, shakiness, sensitivity to light and sound, obsessive thoughts and ruminations.

My options in life seemed horribly limited, and all I could see was impermanence and futility-not just in my life, but everyone’s. It wasn’t just a “lack of interest” in activities; it was all meaning sucked out of life. I couldn’t think clearly, couldn’t focus. Everything ran together, without definition or order. It was mental chaos, when seeing dust bunnies in a corner could make me heartsick and filled with dread.

Dealing with people was frightening, because I’d become acutely self-conscious. Every time I stuttered or mis-spoke I felt humiliated, and it became a vicious circle: in my discomfort I became more ill at ease, which caused more communication problems, and so on.

I began to avoid going out in the yard, for fear of having to chat with neighbors. Even the idea of calling a plumber filled me with anxiety. And since I was too tired to put on “real” clothes, I wore the same sweatpants and flannel shirt day after day, avoiding go anywhere at all. I became almost completely isolated. Fortunately, my husband and I had developed a habit of going to a movie every Friday night. I could manage that; it was not too frightening, and it was an escape from the blackness that ruled my mind.

Although long-prescribed sleeping medication allowed me to sleep through the night, I was always tired, and suffered from constant lower back pain due to sciatica and muscle wasting. I could have easily slept during the day, but avoided naps because an even deeper malaise would seep into my brain as I slept, and I’d awaken feeling worse than before. What baffled me to no end was how much better I would feel as evening approached: more energy, better mood, less pain.

I thought of death and suicide nearly every day. Frequently on the verge of tears, I often broke down altogether, sobbing uncontrollably. Each morning I woke with intense guilt, despair and fear. My first thoughts of the morning were fearful-and yet almost hopeful-imaginings of when and how I might die. There were times when my spiritual faith faded so far into the background that only my elderly cats kept me from killing myself. I didn’t feel that my husband needed me, and in fact would be relieved of a lot of pain and stress if I were gone for good.

It was an odd emotional roller-coaster that seemed always to point downward. I worried constantly about neglected home repairs and the lack of money we had to fix them. I had little appetite (partly due to the AIDS drugs and the anti-depressant I was taking), and I only ate enough to wash down my many AIDS medications.

For the first few weeks, I was particularly angry. It’s a “character trait” I’ve had all my life-a bad temper, an irritable personality. (I now know that irritable, angry children are often depressed.) And this summer, nothing that came out of my mouth was positive. I hated everything- from TV commercials, to our status-conscious neighbors, to the doctors who couldn’t get to the bottom of all my pain.

Shame and Denial

Not surprisingly, my own denial and lack of information kept me from really understanding I had a mental disease. I’d been told I was depressed (and of course, by the time I was infected with HIV, I had “a good reason” to be). Doctors had prescribed anti-depressants for me since 1996, but none ever explained the disease. It was only this year that I tried to discern when I’ve had “episodes” of depression-to tease out the disease from what I always thought was just my “rotten” personality.

In fact, shame is the real reason it’s taken me nearly 35 years to face this thing. I’ve learned that shame is one of its symptoms, but I still believe depressed people feel shame for more reasons than “distorted thinking.” Maybe “embarrassment” is a better word for it, but mental illness in America is still often ridiculed, if not scorned outright.

Of course, my slowness to come to terms with depression parallels the painfully slow learning curve of the medical system itself. Thirty-five years ago, even the psychiatric profession didn’t know much about it. My father was a psychoanalyst, yet even he did not see (or want to see) the symptoms of depression in his own daughter.

And even my current doctor doesn’t seem to “get” it, although she’s been prescribing antidepressants to me for years (since 50-80% of people with AIDS have depression). Recently she told me of a new study that showed depressed HIV-positive women had higher mortality rates than those who weren’t depressed. To my mind, this conclusion merited “a big ‘duh.'” Yet my doctor said, “But this shows depression is real!”

Understanding Depression

There has been a sea change in America since the sixties, when depression was never discussed in casual conversation. Celebrities have confessed they have the disease. The media has picked up on it, and psychoactive drugs have flooded the market. Now it seems family physicians are prescribing antidepressants for almost every kind of upset.

Much progress has been made, and many lives saved. Depression went from being mysterious and unknown to ubiquitous and almost fashionable. But there’s the rub. Movies like “As Good as it Gets” and TV shows like “Monk” make mental disorders look cute and endearing. Such shows sanitize the problem, smooth out the unpleasant edges, and leave out details so that painful diseases become palatable and even humorous. The reason, I believe, is because the real thing is still somewhat unsavory in our society, which values productivity and conformity above all else.

The problem is that the incidence of depression is growing rapidly-up to 20% of Americans experience it at any one time. And to stop its spread, we have to examine it more closely-and I think the stigma of mental illness prevents us from doing so. Instead, we hold it at arm’s length, as if gazing at it through the wrong end of a telescope.

Recently I read that “everyone knows what it’s like to be depressed.” In other words, depression is something like a long-lasting sad feeling. But sad feelings and a major depressive episode are as similar as a drop of water and the ocean. You simply can’t know the ocean by observing the drop.

The Turning Point

When in July of this year the episode had gotten so bad I was speaking in a monotone and my husband looked like a whipped puppy, I got scared enough to face the shame and admit I had a serious mental disease. I swore to myself that if there were anything I could do to prevent it, I would never go through that again.

Of course, it was very difficult to do anything at first. But slowly, I read a half-dozen self-help books that were, to my astonishment, helpful. I switched anti-depressants. And even though I’d sworn off psychotherapy after a half-dozen ineffective attempts, I tried yet one more therapist (who will, I hope, be my last).

I began to walk in the park, having learned that light and exercise are helpful. I improved my diet. I wrote my thoughts in a journal and renewed my spiritual practice. I’m still not out of the woods, but I have regained a shaky hope.

For me, the sobering reality is that after a lifetime of dysthymia, it appears I’ve begun experiencing major depressive episodes that are worse each time. Statistics show each episode increases the likelihood of a recurrence. I’m working hard on staying well.

By: Colleen Bridget Farrell
Editor: Shaheen Lakhan