What it's like to live with ADHD so severe it feels like 'brain fog'
It's not that she doesn't want to. Eliana's a sharp, hungry learner. But she also has attention-deficit hyperactivity disorder (ADHD), which is sometimes called attention-deficit disorder (ADD) in people like my sister who don't exhibit many hyperactive symptoms.
Eliana's is not the sometimes-loses-track-of-her-keys kind of ADD, and not the "oh, isn't that over-diagnosed?" kind either. My younger sister describes the condition as a "brain fog" that comes and goes over the course of a day.
It's a disability that's shaped the course of her life.
Defining ADHD
ADHD isn't really one thing - there's no ADHD spot in the brain, and the disability doesn't look the same in every person.
Lenard Adler, who directs the Adult ADHD Program at New York University's Langone Medical Center, describes ADHD as a set of symptoms that tend to travel together. These include struggles with organization, detail-oriented work, and focusing on a task.
ADHD's hyperactive symptoms make it difficult for some people to stop moving or speaking - as if there were a motor running inside their skulls. People with strong hyperactive symptoms can talk and talk, or jump in when other people are speaking - unaware that they've cut someone else off or unable to help themselves. They might fidget, unable to control the urge to move their bodies. Kids with ADHD will often jump from one game to another when playing, unable to focus as long as their friends.
Plenty of people experience distraction and hyperactivity at points in their lives, which is partially why there's a widespread assumption that the condition has been over-diagnosed. That critique has some merit, but according to the Diagnostic and Statistical Manual of Mental Disorders, a person has to have six attention-deficit symptoms and six hyperactive symptoms for more than six months in order to be diagnosed with ADHD. And those symptoms can't be traced to another mental illness like depression or schizophrenia.
That means a person with ADHD likely experiences their symptoms as overwhelming and consistent enough to disrupt their lives. Spacing out occasionally doesn't cut it.
Engaging with the world when you can't focus
The thing you have to know about Eliana is that she is smart as hell.
Make an argument that she disagrees with and she'll peel it open, reach inside, and find the flaw at its center. Ask her for an opinion on the rare subject she hasn't studied, and she'll come back hours or days later with a fully-formed, deeply-sourced theory of the case.
But her symptoms make it difficult for her to engage with the world in the way people expect.
"People will be talking to me, and I'll stop hearing what they're saying," she said. "And it's the same sort of thing [as with reading]. I'll go through the motions, nod my head, mirror their body language and stuff. But the information isn't coming through."
Because of this, Eliana can sometimes come off as standoffish.
"Sometimes I'll take my phone out and read my text messages or something. It's not because I'm trying to be rude. I'm just not cognizant of what I'm doing."
Like many kids with ADHD, Eliana spent her school years in a state of almost constant struggle - with homework, with teachers, and with our parents. In elementary school, she'd sit for hours with a book report or set of math problems, straining to focus her attention on the page. When she couldn't, she would cry, or fight with our parents. After these episodes she would go into her room and stab holes in the wall or beat herself around the head with her hands. Sometimes she hurt herself.
By high school, Eliana had given up on the idea that she'd ever be a good student. She felt dumber than her classmates, she said.
"I could see my classmates finishing the assignments in 10 to 30 minutes," she said, "But they'd take me hours and hours and hours and sometimes I couldn't complete them."
To describe the experience, she said to imagine someone putting a heavy weight in front of you, one you know you can't pick up. You grab and pull on it anyway, but it won't budge.
"The processes that needed to go on simultaneously to complete the tasks just wouldn't line up," she said.
Variation between cases
ADHD isn't always this debilitating. Nate Bartlett, a video producer in Chicago (who was, full disclosure, briefly my boss in 2015), says he's been able to successfully manage his case of ADHD case with coping strategies and medicine.
When his focus slips, he said, he can get stuck in a loop performing some other, meaningless task - losing time and energy he hoped to devote to work. Nate was diagnosed in early high school, so he was allowed extra time on tests and the SATs - enough to account for the time he lost to his wandering mind.
"I remember thinking [after my diagnosis], 'Oh, I wish I'd done this a few years ago,'" he said.
Nate managed his symptoms without medication until college, where he struggled to find places in which he could focus on his studies. Even the library was too distracting, he said - he'd find himself scanning book titles rather than preparing for a test. So, for the first time, he got a prescription for Adderall, an amphetamine and stimulant that can help people with ADHD regulate their attention.
Adderall stimulates cells in the brain to produce more chemicals called neurotransmitters - chemical messengers that help nerves pass information around in the brain. Psychiatrists think those extra neurotransmitters can help people with ADHD focus, though the exact mechanisms aren't entirely understood.
There are also several classes of non-stimulant medications for ADHD, the most common of which is known by its brand name Strattera. Rather than stimulate more neurotransmitter production, Strattera prevents a patient's brain from clearing out neurotransmitters it has already produced. Clonidine is also a fairly common non-stimulant treatment that has been found to help patients.
According to Adler, doctors don't prescribe Adderall and other stimulants lightly, since they can have harmful side effects and come with the risk of patients abusing them as recreational drugs.
Nate said that aside from a somewhat unpleasant rapid heartbeat (a common side-effect), Adderall was a positive force in his life. He learned to use it as a tool to get through his work, rather than as a crutch. Now that he's working full time, he doesn't take the drug anymore - instead, he relies on coping mechanisms like playing loud music in his headphones while he works and isolating himself in a private office.
Eliana's experience with medication wasn't as smooth. Throughout middle school, doctors prescribed her a range of pills - Strattera, Adderal, and others - with limited success.
"I'd given up." she said. "Just the idea of being competent in school was, like, so far-fetched."
When treatments don't work
Eliana stopped taking medication by the time she got to high school, and sought out other ways to cope.
"I turned to marijuana, really heavy marijuana use. Obviously it doesn't treat the symptoms but it sort of mutes them and dampens them," she said.
After high school, she went on a gap year program where a few other people also had ADHD. She began getting a prescribed medication, Vyvanse (another amphetamine), from a roommate in exchange for doing his homework.
"He would give me a Vyvanse, and I would write his essay for him," she said.
It was enough to suck her in - uncontrolled by a doctor or limited by a prescription, Eliana started to overuse the drug.
She became addicted. Although we spoke all the time back then, I didn't notice anything wrong. She sounded better, happier, and more sure of herself than she had in high school.
"To a large extent what I became addicted to was the ability to write, she said. "I would take [pills] in order to be able to write for extended periods, or read things. But because I wasn't in a healthy environment and I wasn't in a healthy mental state, it got real bad."
Eventually, she got her own amphetamine prescription, but continued abusing the pills. Eliana experienced multiple bouts of stimulant psychosis - a condition marked by disordered thoughts and delusions. The same medicines that cleared her brain fog could act as poisons, mixing her head up in a different way.
Navigating a world that doesn't accommodate your symptoms
Eliana has since kicked the pill habit and made a few stabs at community college, but none of them have stuck. Her disability and lack of college degree make it hard for her to get regular work. Instead, she devotes a lot of time to volunteering, organizing, and protesting with activist groups. Not being able to read still frustrates her constantly.
"I'll find myself reading something, then not knowing what I read. My eyes will scan the words, and some part of my brain is playing them in my head, but the information isn't actually penetrating," she said.
Her current doctor won't prescribe her stimulants, fearing her history of addiction. According to Adler, that's one of the biggest concerns for doctors treating ADHD. Nonetheless, Eliana wishes there were a doctor willing to work with her to find a safe medication regimen.
Right now, her doctor is pushing her toward a common treatment for severe ADHD that doesn't involve medication: cognitive behavioral therapy, or CBT. The goal is to get patients to confront situations that trigger their symptoms, and slowly retrain their brains to respond more productively. Psychiatrists also use CBT to manage other mental illnesses, including depression and obsessive compulsive disorder.
But Eliana doesn't want to try it. To her, CBT feels more like an effort to make her into a productive member of the workforce than to alleviate the symptoms she finds most painful.
For now, she's given up on treatment.