En español | (Video) No More Shame: Releasing a 30-Year Secret: What does it feel like to experience severe anxiety and depression? Why is there so much stigma around treating it? In an intimate, first-person account, AARP's Meg Grant reveals her 30-year, secret struggle with the disease and breaks the cycle of shame surrounding it.
In the fall of 1985, my life was pretty darn good. I was 26, crazy in love with my husband, Greg, and looking forward to settling into our new home in Seattle. We were a well-matched couple: high achievers and fearless strivers, ready to ditch the SoCal smog and begin life anew in the clear air of the Pacific Northwest. I landed a gig as a features writer for the Seattle Times; Greg began working as a clinical psychologist at the respected Western State Hospital. We moved into a cozy one-bedroom bungalow on Queen Anne Hill with a view of Lake Union. We made new friends easily and met up with them for toast-filled dinners at our favorite restaurants, such as McCormick's Fish House and the Greenlake Grill. On weekends we hit the Pike Place Market or ventured out to the San Juan Islands or British Columbia for romantic overnight stays at tiny B&Bs. Greg and I were almost giddily living in the moment but also looking forward to what we expected would be an amazing and fulfilling future.
It was an ordinary October night, I recall now, the happy end of an ordinary drizzly Sunday, when I awoke with a start from a deep sleep, my heart thudding and adrenaline surging like fire through my body. My ears buzzed, my leg muscles spasmed, and my throat closed. What was worse: I did not know where — not even who — I was.
Five minutes must have passed before I succeeded in recalling the where — Bigelow Avenue in Seattle — and the who: me, Meg, successful young journalist, wife, married to a wonderful man who loved me. I shook my husband awake, paced the living room floor, then finally ran out into the street, where I doubled over, struggling to catch my breath.
"Take me to the hospital!" I demanded. Instead, Greg walked me back into the house and calmed me down, telling me I'd probably just had a disorienting dream. "We're in a new place," he said, donning his therapist hat. "It's normal that you might at times feel scared." He managed to coax me, still shaking, back into bed, where he held me tight. With him at my side, I tossed and turned until dawn.
Later that day, my internist suggested I might be having a bad reaction to asthma medication I'd been taking for a year. I stopped the drug immediately, but three weeks later, my hands still trembled; I slept hardly at all; I had to force myself to eat. I was in panic mode 24/7, convinced I was losing my mind and on my way to a mental hospital. I tried twice-a-week counseling sessions and swam 100 laps a day at the YWCA pool to burn off my anxiety. I even volunteered to undergo hypnosis at an alternative medicine clinic, but nothing worked, and my despair deepened into depression.
My mother, a devout Catholic, almost shouted through the phone lines: "You've let yourself get out of control! You haven't been going to church enough!" My father, a surgeon, said I was too smart to need a shrink. My husband didn't always have the answers I wanted to hear — "It's better never to have a nervous breakdown than to hope to recover from one," he once said when I asked — though he was a thousand times more understanding than most other partners would have been. Still, that winter I startled myself more than once — and always while soaking in the bathtub — by imagining that a simple way to end the pain would be to sink under the water and stay there.
And so it was in late January of 1986 that I fled home to my parents in Phoenix. My father, shocked by my condition, referred me to a psychiatrist, who determined that I was suffering from a serious depression, along with what's called panic disorder. He wrote me a prescription for a month's supply of Ludiomil, an early antidepressant of the tetracyclic class, which, within a week, tamped down my anxiety enough to allow me to sleep. I returned to Seattle and began treatment with a gentle, compassionate Dutch psychiatrist named Johan Verhulst. Throughout this period, I never missed a day of work and told no one outside my family and a circle of trusted confidantes about my diagnosis. It would be my secret — my hidden struggle — for the next 30 years.
Because I remained in the closet about my condition, I felt a tremendous sense of alienation and shame. Little did I know that I was hardly alone in my distress. One in 4 American adults — approximately 61.5 million people — experience mental illness in a given year. Fifteen million people in the U.S. live with major depression; 42 million suffer anxiety disorders. Sadly, many never seek treatment, which may be why suicide is the 10th leading cause of death in America, according to the National Alliance on Mental Illness.
For me, getting healthy was a difficult and gradual process. For months my symptoms swept in and out like pernicious tides. One day I'd be able to savor a meal or talk to my sister on the phone without crying; the next, nothing would seem real, including me. I'd be lost in a fog — numb and dull. Travel, meeting new people and unstructured time all made me uneasy, which quickly morphed into a vague feeling of free-falling, then anxiety, then hopelessness about ever feeling normal again. Indeed, merely anticipating what I saw as the next inevitable bout of panic seemed to bring one on. When I confessed this fear-of-the-fear cycle to Dr. Verhulst, he eased my mind with a simple statement: "You are no more to blame for your condition, Meg, than an epileptic is to blame for suffering epilepsy." He also upped my dosage of Ludiomil, which gave me dry mouth, constipation and fatigue but quelled my panic. To live without all the angst was worth the side effects.
A year later, I was feeling better but still fragile. Dr. Verhulst encouraged me to switch to Prozac, the first of a new class of antidepressants with far fewer side effects than tetracyclics. Prozac seemed to work by blocking the reabsorption of serotonin, a chemical that brings on a sense of well-being, in the brain. Selective serotonin reuptake inhibitors, or SSRIs, must have seemed like miracle drugs to psychiatrists at the time, as they prescribed them not only for depression but also for anxiety, chronic pain, obsessive-compulsive disorder, PMS and more. Soon enough, SSRIs became the most commonly prescribed medication class in the U.S. Prozac begat Zoloft, which begat Paxil; now more than 260 million antidepressant prescriptions are filled each year. (To put that number in perspective, the total U.S. population is 321 million men, women and children.) The heaviest users? Boomers like me, struggling through the middle of our lives. The National Center for Health Statistics shows the proportion of Americans ages 45 to 64 taking antidepressants soared from 3.5 percent in 1988-94 to 14.3 percent in 2009-12.
And for reasons as varied and complex as the symptoms that drove us to these drugs, we have not stopped taking them. I am well aware that they were never designed to be taken indefinitely. Doctors typically recommend a six- to nine-month course of treatment, or until well after symptoms have subsided. Yet I have remained on the medicines — except for the 48 months that began before my first pregnancy in 1989 and ended after my second in 1992. That's half my life. And I have plenty of company: A 2014 analysis in the Journal of Clinical Psychiatry found that long-term antidepressant use (defined as 24 months or more) has surged in the 21st century. More than two-thirds of us who take antidepressants report long-term use, with the heavy majority of those "longtimers" clustered in age groups 45 and up. That's as many as 5 million boomers — not surprising, perhaps, for a generation that came of age believing there's a pill for everything.
But there are many unanswered questions: Are we longtimers risking our health in ways yet to be established? Does open-ended pill popping represent a chemical crutch or a rational approach to a chronic illness? Are the meds addictive enough to discourage getting off them? Or, to put the questions in personal terms: Should I be worried?
I put my questions to some of the nation's top mental health experts — and discovered that easy answers were hard to come by. Most conceded that SSRIs and other antidepressants can be extremely difficult to withdraw from. "Some people have tried to stop and felt withdrawal symptoms such as increased moodiness or anxiety," said Matthew Rudorfer, M.D., associate director for treatment research at the National Institute of Mental Health (NIMH). "They then assumed they were getting sick and rushed back on. That might be the wrong answer. Some people need a long and slow taper to come off. These drugs should never be stopped cold turkey."
Tell me about it. After I'd been on meds for two years in 1988, I told Dr. Verhulst that I was feeling well enough to go off. He recommended a very gradual decrease in my daily Prozac. Did I listen? No. Overly confident, I immediately cut my dose by half. Wham!
Within days — on March 25 of that year, to be exact — my symptoms returned: muscle cramps in my thighs, trembling hands, that familiar dry lump in my throat. And too soon, those old obsessive thoughts about going crazy and being locked away in a mental hospital returned in full force.
Days later I was back in Dr. Verhulst's office, where I agreed to taper off the Prozac in much smaller increments. It took me six months to go off entirely, by which time Greg and I had relocated to Miami to take exciting new jobs — I as a bureau chief for People magazine, and Greg as a psychologist for the Miami-Dade County Children's Court. Now that I was med-free, Greg and I felt ready to start a family, and in 1990 we welcomed the birth of a gorgeous baby girl.
My unmedicated life was kind of a beautiful thing. Yes, I was better. And yes, it felt liberating to no longer rely on a chemical crutch. But most important was my fading sense of alienation. I could now count myself among the normal masses, a healthy woman who, with my husband, had just started a family — something, in the throes of my illness, I feared would be closed off to me.
I remember those four years free of antidepressants as a cheerful but busy blur of baby-raising — decorating a nursery, changing diapers, hiring a nanny — while balancing my career. But after the birth of our second child, a strapping son, signs of a relapse appeared. My daughter was about to start preschool, and I vividly remember dreading the first parent meet and greet. Would I be unable to speak? Faint dead away? Almost immediately, the physical symptoms returned. My hands trembled, legs ached, throat closed. Soon the old sadness rode in, coupled with a smothering malaise.
I quickly scheduled an appointment with a new psychiatrist. Without hesitating, he put me back on Prozac. I knew that SSRIs don't take effect immediately — they sometimes require weeks to kick in — but three months went by with no relief. I tried Zoloft next, again with no success (by which I mean three more months of unrelenting anxiety and despair). Finally, a colleague of Greg's recommended Effexor, an SSRI cousin that works well for depressives who, like me, also suffer from panic disorder. At last the crashing waves of fear and hopelessness began sliding out to sea.
Though my overall symptoms during that relapse were no worse than they were at their initial onset seven years before, it took me longer — two long years — to regain a sense of stability. I checked with Paul Summergrad, M.D., immediate past president of the American Psychiatric Association, who explained why it took so long. "You can end up with tachyphylaxis, where the drug loses efficacy," he said. The reason why is unclear; some experts point to a dynamic called oppositional tolerance: A brain on medication stops producing serotonin naturally in some, causing symptoms to worsen to the point where the old dosage — or drug — no longer works.
I should point out that unlike many fellow sufferers of depression, I have managed to avoid hospitalization. With the help of my husband, I have successfully raised two lovely children. I managed to move upward on my career path, in part because the focus required in my work — the reporting, the writing — served as a distraction from my inner pain.
But enough was enough. Once I recovered from my 1992 relapse, I opted to stay on a low dose of the meds indefinitely. That's because research shows that the chance of recurrence goes up with each episode of clinical depression. "If you have two or certainly three episodes," Summergrad noted, "the advice is to stay on medication longer — for an ongoing essentially indefinite period."
That was me, medicated and under a doctor's care for "an indefinite period" — and looking for assurances this was safe. Kenneth Duckworth, M.D., medical director of the National Alliance on Mental Illness, told me such assurances are hard to come by. "Medicines are tested for weeks or months, not years, to get FDA approval," he said. "Once things are on the market, we rely on voluntary reporting for side effects." I have so far noticed few side effects from my SSRI usage, though other users have reported increases in bruising and bleeding, as well as a slightly higher risk of bone fractures.
Those possibilities aside, Maurizio Fava, M.D., an SSRI expert at Massachusetts General Hospital, said: "There has not been any particular adverse event associated with long-term use of antidepressants."
That kind of medical certainty calmed my fears — temporarily — until I asked the opinion of NIMH's Rudorfer. "It took many years to figure out that the older antipsychotics could cause tardive dyskinesia — a terrible, permanent neurological disorder," he said. "There does not seem to be anything that drastic with these antidepressants, but we're talking about medications we are intentionally getting into the brain — and that should be taken very seriously."
So, we longtimers, millions of us, must live with the uncertainty about the drugs that are getting into our brains. But one thing I can't get out of my brain is my growing belief that my depression is a chronic disease with a strong genetic component. When I woke in a panic nearly 30 years ago in Seattle, it seemed my condition had come out of nowhere. Yet hindsight has enabled me to spot symptoms that surfaced intermittently throughout my adolescence — tear-filled nights, social isolation and a brief, morbid fascination with razor blades. I realize such experiences are typical of so many teenagers. But as it turned out, some of my close family members hadn't been "going to church enough" either, to quote my mom. A few years after my first depression, an older sibling was diagnosed with severe depression and anxiety, and a handful of other relatives remain active members of the Antidepressant Users Club today.
Of course, there are more ways to treat depression than with medication, although I believe I could never have recovered without it. Still, key to my first remission was the counseling I received from Dr. Verhulst. No fan of Freud, he gave me permission to stop scouring my past for the cause of my distress and start learning new and constructive ways of accepting myself.
When I told Rudorfer, the doubting Dr. Thomas, that I view my daily low dose of Lexapro today the same way I would a medicine to control high cholesterol, he paused, then told me I had a point. "Side effects do not determine the stop-start decision of antidepressants any more than the daunting list of adverse effects should deter a person with cancer from undergoing potentially lifesaving chemotherapy," he said. "The risk of untreated depression is greater than the risk of any adverse effect of antidepressants."
So that was my answer — as clear as these things will ever get. I won't go off the meds again, but I will no longer keep the secret. I am lifting the veil on my experience, in part to chip away at the shame and to share what I've learned with the many members of my generation who have these same worries. For me and the many people they have helped, antidepressants allow us to experience the full gamut of emotions — not some artificial sense of well-being but every shade of human experience, from grief to joy. In the depth of my disease, I was too overwhelmed to feel anything but a numbing pain. Antidepressants have given me the freedom to be moved deeply by the life that's happening all around me, and that's a precious gift.
Meg Grant has written some two dozen features during her tenure with AARP The Magazine.
The search for next-generation therapies for depression embraces multiple strategies to fight this common, life-threatening disorder.
Mindfulness-Based Cognitive Therapy (MBCT)
Developed by psychotherapist Aaron Beck in the 1960s, cognitive therapy (CT) teaches people how to change their thinking to influence their moods. Therapists now believe that CT combined with mindfulness — observing one's thoughts and feelings without getting caught up in them — can be helpful for those who suffer depression.
Ketamine and related drugs
In trials; some on the FDA fast track
A powerful anesthetic, ketamine targets a glutamate receptor called NDMA that helps to increase brain-cell function. Early studies have shown that a ketamine infusion can reverse suicidal depression within hours, though there can be hallucinogenic side effects. (The drug has found its way to the party scene.) Results are short term. Testing is underway on non-hallucinogenic variations and different methods of delivery, including a once-daily pill.
Kappa-opioid receptor (KOR) antagonists
A few on the FDA fast track
Naturally occurring opioids in the brain help to regulate neurotransmitters, but opioids such as morphine tend to increase pleasure and have the potential for addiction. The KORs in development offer an antidepressant effect without the pleasure response or risk of dependency.
Some types in clinical trials
Directly stimulating the brain to relieve depression has progressed since the early days of electroconvulsive therapy. New studies suggest that low-field magnetic stimulation (LFMS), which painlessly sends low-strength, high-frequency magnetic waves to the brain, may offer treatment-resistant patients immediate relief.
Triple reuptake inhibitors (TRIs)
Some in early human testing
Today's antidepressants target the brain's neurotransmitters serotonin and norepinephrine. Now researchers are suggesting that dopamine should not be overlooked and are investigating drugs that simultaneously target all three key neurotransmitters.