There’s a stigma around brain implants and other depression treatments

People can be intensely uncomfortable with the idea of changing the brain

Jon Nelson walks along a New York subway platform holding a bag.

As part of a clinical trial on DBS for depression, Jon Nelson makes frequent trips from his house in Pennsylvania to research labs at Mount Sinai in Manhattan.

Aidan Kahn

Like many people who have struggled with a mental illness, Emily Hollenbeck had plenty of stories of people not quite getting it. One memorable instance happened as she was about to be anesthetized for an electroconvulsive therapy treatment. The anesthesiologist found out that she had a Ph.D. in psychology. “His eyes settle on me, and he goes, ‘Oh, that’s ironic.’” Her academic background should have somehow prevented her illness, he seemed to imply.

A palpable silence filled the room. “I remember literally biting my tongue,” she says, “being like, ‘We’re not going to sass the guy who’s injecting the propofol.’”

Being open about depression can bring judgment, and danger: “If you are honest about what you need for your mental health, you can suffer consequences,” says Emily, who had DBS surgery in 2021. That can include lost jobs, lost relationships and perhaps most crucially, lost health care.

Those consequences are why I’m not identifying Patient 001 by his name. He works in an intensely intellectual and competitive field, and with a new baby at home, he can’t risk losing business over people’s mistaken assumptions.

There’s stigma surrounding depression, and there’s stigma surrounding its treatments. When Patient 001 told his family he was getting experimental brain surgery, they didn’t understand. “At first, they were like, ‘You’re crazy. It’s unsafe.’”

In a way, their reaction tracks with people’s suspicions toward other treatments for depression, and psychiatric disorders more generally, despite the fact that they work for many people. Since their rise to prominence in the 1990s, antidepressants have caught heat from people claiming the drugs change personalities and steal emotions. Electroconvulsive therapy is still crawling back after the damage done by portrayals like in the movie One Flew Over the Cuckoo’s Nest. Even talk therapy can bring shame and secrecy.

So perhaps it’s not surprising that electrodes implanted into your brain raise a whole new set of assumptions, misgivings and judgments. People will live with these stigmas until society changes, until people start understanding what severe depression is like, and what treatments are like too.

“You’re screaming for help, and they just don’t understand,” Patient 001 tells me. “That’s probably one of the reasons I’m talking to you, even though I’m doing it anonymously. I hope one day one kid reads what you’re writing, and he finds DBS and he’s cured.”

Barbara, Jon’s wife, is no stranger to people’s uncomfortable reactions. “When we have told people that he has a pacemaker in his brain, basically, you get this sort of strange, ‘Oh my God,’…. They’re like, ‘What? You’re going to let them do this to you?’” There’s this assumption, she says, that the brain is somehow different from other parts of the body. The heart can also need a device that delivers electrical stimulation. So why not the brain? “It’s really interesting to see people, myself included, process that.”

Watch a video of Barbara Nelson talking about her experience as a partner to someone with depression, and how DBS changed her family.

I’ve been wondering the same thing: What sets the brain apart, and why are people so uncomfortable with attempts to change it? 

Here’s what I think. Remember the Dutch guy who all of a sudden loved Johnny Cash after his implant was turned on? That story sounds a bit trivial. His new musical taste didn’t bother him; it’s a minor thing in the grand scheme of things. But that change, that switch, arguably bores straight to the core of our unease. So many of us, myself included, consider our brains — and the minds they create — the bedrock of our identity. So when a disease attacks the brain, or a treatment changes the brain, we get nervous.

None of us like the thought of having a brain implant tell us what music we like, especially if we might not be aware of it. The stakes are much, much higher when it comes to how we feel.

Does DBS change who you are?

Reporting this story, I heard a lot of jokes about being a cyborg, Bluetooth-enabled, bionic. People would laugh as they said it. But I wondered if there was anything more to these offhand comments. Does this brain implant change who you are?

Jon kindly tells me that he understands why I’d ask. “I can only tell you that it is the exact opposite of that question,” he says. For him, DBS took away his poison. “It purely eliminates the disease…. That’s it.”

Amanda echoes the sentiment: “Nothing I’ve ever done has changed who I am or my personality,” she says, DBS included. “I’m still the same person. I’m just suffering more or less.”  

Emily flips my question on me in a beautifully philosophical twist: “What does that even mean? Where is the ‘me’?” Equating ourselves with our brains makes sense, she says, because much of what we experience comes through our brains. “But is that really where our selves are?”

portrait of Emily Hollenbeck
Emily Hollenbeck, like other people with DBS implants, had to relearn how to cope with her new emotional range.Courtesy of Emily Hollenbeck

Who she is, Emily says, is an activity, a choice. Her depression took away those choices and altered who she was. But now, “I don’t have that feeling, so which of those is correct? I don’t know. But I know which one I like better. I know that’s not a satisfactory answer for your question, but what really gets to the heart of it is that I feel like I’m untethered, and I have the ability now to focus on the things that I do really care about. And that’s where my self lies.”

These days, Jon says, his sense of self is lighter. Without the poison coursing through his body, Jon feels better, more energized, more present in his life with wife, Barbara, their three kids, a dog, a cat and a bearded dragon named Lizzy. But, as his daily surveys make absolutely clear, he’s still crabby. “There are certain things that you realize are the disease, and certain things that are innate in who you are,” he says. His irritability scores didn’t budge after DBS. “I guess I’m just a cranky middle-aged dude now.” 

Barbara may be one of the best judges of who Jon is now. Is he different somehow with DBS and without severe depression? “I don’t feel like he’s changed,” Barbara says. “I don’t feel like I have a different person living in my house. It’s not that creepy, sci-fi way, like there’s this new person,” she says. It’s just him, the Jon she met all those years ago.

Our final article in the series looks to the future for Jon and his family, and for deep brain stimulation.

This series was made possible with funding from the Alfred P. Sloan Foundation.

Laura Sanders is the neuroscience writer. She holds a Ph.D. in molecular biology from the University of Southern California.

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