What It’s Like to Know You’ll Be on Antidepressants for Life

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Photo-Illustration: Photos: Getty Images

A few years ago, after being on the same medication regimen for depression for several years, I told my doctor I wanted to try to go off of one of my meds. I was taking three at that point and I felt bad about how many medications I was on. She asked if any of them were causing me issues, or if I felt they weren’t working; I said no, but that I was exercising and eating well and felt great, so maybe I was cured! Eventually we compromised, decreasing one of my meds slightly.

Two months later, I was back in her office, crying. Everything had been great and now everything was bad and I didn’t know why. She asked how long I’d been feeling that way, and I guessed about a month or so. She pointed out that we’d decreased one of my medications shortly before I started feeling bad.

At first, I burst out laughing: The problem had a solution; I was so relieved. But then I asked her, am I going to be on medication forever?

I remember her looking at me carefully. She asked if that idea upset me. I immediately said yes. Then she asked why. I didn’t have an answer right away. Maybe it was money? I hated that it was more expensive to keep me alive than it was for “normal” people. She nodded; that’s understandable. But were there any other reasons?

Finally, I said, “I guess I feel bad? Like I’m weak?”

She asked if I thought other people who take medication are weak. I shook my head immediately. Of course not. Then why did I think I was?

***

The notion that people who take medication for mental illness are weak seems rooted in internalized social stigma. There’s still this strange divide in thinking about mental illness, where much of society seems to dismiss those illnesses as somehow less “real” than ones that are considered “physical.” But aren’t our brains part of our physical bodies? If a mental illness is making it impossible for someone to get out of bed, to walk even short distances, and to eat properly, how is that not a physical ailment? It suggests an assumption that because someone’s pain isn’t visible, it’s not real.

It’s an idea embedded within a widely shared piece in the New York Times this weekend, headlined “Many People Taking Antidepressants Discover They Cannot Quit.” The implicit assumption of the article seemed to be that there is something fundamentally wrong about being on medication long-term, despite the fact that for many people, depression is a chronic illness. (As researchers in a 2010 study wrote, “Recurrence is the rule, and about one-third of patients go on to develop chronic depression.”) But never once does the article mention that going off medication is a common cause of death among depression sufferers; that many people, when they start to feel better, forget how bad they felt before, forget that feeling better came from the drugs they were on, and stop taking them; or that for many people, the alternative to the side effects of and dependency on the antidepressants or anti-anxiety medication they take is a feeling I’m fairly certain is worse than death, or death itself.

The issue of short-sighted mental-health research that the Times article raises is a real one (and was also addressed by NPR in 2010). That long-term studies are expensive and not in drug companies’ best interest, and that nearly all research — even research done at academic institutions — is funded by pharmaceutical companies is a fact. But there are other facts: The brain is the most complex organ in our bodies, and it makes sense that we’re still at the Galileo stages of our understanding of it. Mental illness has only been studied seriously as a medical issue for a handful of decades; there is a ton left for doctors and researchers to learn. We don’t even know for certain that the problems originate in our brains, rather than elsewhere in our central nervous system, or even another system entirely. A 2015 study, for instance, suggested that an interplay between the gut and the brain might be “the missing link” in our understanding of depression.

There are certainly people who can take antidepressants or anti-anxiety medication short-term. It’s frustrating that for those people, there are few options in terms of medication that can be discontinued without issue. But there are many of us who need to be medicated indefinitely, and that the default belief about medication is that it is meant to be used on a short-term basis is extremely harmful. It’s stigmatizing. It perpetuates a notion that to take medication is to somehow be weak. The Times article, for example, included this line: “Longterm users report in interviews a creeping unease that is hard to measure: Daily pill-popping leaves them doubting their own resilience, they say.”

How is this not a product of social stigma? The common mentality is that being responsible about one’s illness is somehow a sign of a lack of “resilience,” rather than one of strength and intelligence.
Why do we venerate suffering? Suffering is given a moral value, as though there is something about being miserable that is worthy of praise. But what is so bad about using our intellect — using science — to make our lives better, more livable?

The go-to analogy in this situation is usually diabetes. Would anyone judge someone with diabetes for taking insulin? Maris Kreizman, who wrote a Longreads essay about her experience growing up with diabetes, supports this analogy, and said the fact that she had to accept that her diabetes was “a lifelong condition” helped her come to terms with the same realization about her anxiety.

“There is no diabetes cure just around the corner,” she said. “And last year I realized that my anxiety was the same. I’d taken antidepressants a few times in the middle of crises, but it was when my life was going really well, and I got married and felt good about my career but I still felt anxious as hell, that I realized that my anxiety is a long-term illness just like my diabetes.”

Even with the experience of growing up with chronic illness making her more amenable to long-term medication, it took Kreizman some time to accept that her mental illness was as chronic and as real as her diabetes. So it stands to reason that those who don’t have that experience struggle with the stigma of medicating mental illness.

***

Just as I was coming to terms with being medicated indefinitely, the medication I’d been on for about eight years stopped working. It was a couple of years after that conversation, described above, with my psychiatrist. I shut myself in an empty room in the office where I worked, slumped down to the floor in a corner, and called one of my closest friends. For weeks, I’d been crying every day on the way to work. Through sobs, I tried to tell her how bad I was feeling; how I didn’t feel like I was worth anything, or like anything I did or thought or said was worth anything; and how I was so, so scared.

She listened and murmured comforting things, then cautiously said that she hadn’t heard me in this state in a long time. She is one of those invaluable friends who keep people like me alive: She can witness this kind of pain and not get scared or overwhelmed. Something she said in our conversation jogged my memory. Eight years prior, during my second major depression, I told my psychiatrist that I knew everyone else didn’t feel or think what I did — that nothing mattered, that everything was meaningless or worse — but that I couldn’t understand how they didn’t. My psychiatrist told me major depression changes the logic of your brain. When I was well again, the way I was thinking at that moment wouldn’t make sense to me anymore either.

I realized my logic had changed. I called my psychiatrist and told her I was pretty sure my meds weren’t working anymore. I spent the next several months sorting out my medication and fighting desperately to stay alive while feeling like I was possessed by something determined to kill me. I tried different medications; some worked right away, but didn’t feel right. Some worked, and then turned out to have side effects that I couldn’t live with. But one of the worst parts of the experience was that I was in so much pain, and it was completely invisible.

Previously, the lack of acknowledgment from the outside world would have made me doubt myself. You’re just weak, I would’ve thought. Just try harder. But I was trying so impossibly hard. And for the first time, I knew it, and that was enough.

It took a full two months for my new medication to start working. Every week, I would tell my doctor, “I don’t feel better. When am I going to feel better?” But I didn’t feel worse, so I listened every time he told me to give it one more week, give it a little more time. Then one day I was walking outside City Hall — I can still remember exactly how it felt, how it was sunny but brisk, early spring, and I had just eaten lunch and was headed back to work on a story — and I caught myself thinking, “Maybe I don’t need this medication. I feel fine, and it’s not working.”

I stopped in my tracks when I became aware of that thought and laughed out loud. It was working. And it was working in the way that antidepressants work when they’re the right medication for you — so subtly that I didn’t even notice.

What It’s Like to Be on Antidepressants Long-Term