Illustration by Eleanor Doughty
Women with ADHD have to deal with symptoms that range from disorganization to OCD-like rituals—as well as the fear of being found out. The Better Together Festival—where attendees are encouraged to doodle in notebooks or walk around during presentations—aims to ease some of that pressure.
On a bumpy shuttle ride to the Better Together Festival grounds, I sat next to Courtney, a woman I instinctively cast as "having it together." With wide eyes, an exuberant laugh, and the sort of blonde hair I'd bargain with God for, at 27 she seemed to be everything I wasn't: a poised, upbeat woman who doesn't cry on the toilet. Two minutes of conversation revealed a more complicated reality. Courtney was diagnosed with Obsessive Compulsive Disorder in middle school, anxiety and depression in high school, and ADHD just five months prior to the festival. Now, she wonders if the childhood OCD was a misdiagnosis, as she's learning that many of her rituals stem from the chaos of navigating ADHD.
"If I'd had a diagnosis in college, if I had known, college would have been 100 times different. I failed a class my first semester, and it completely shattered my self-esteem," Courtney said. "I thought I was stupid. I couldn't figure out this material. I would read the same page over and over again and not retain anything. It felt like there was a missing piece. People told me, 'You need to study harder!' But there was no one who studied harder than I did."
That's why it's so difficult for millions of girls and women to receive accurate ADHD diagnoses, if any; not only can ADHD can look like depression, OCD, and anxiety disorders (and vice versa), but psychiatrists, parents, and educators are less likely to suspect that a well-behaved girl—let alone a high-achieving woman—could be struggling with a condition associated with boys who maintain gym-class-dodgeball levels of hyperactivity at all times.
The Better Together Festival, a daylong celebration of women with ADD that took place near Ann Arbor, Michigan, in the middle of May, was conceived by psychologist Michelle Frank, and Sari Solden, a psychotherapist who pioneered and popularized the idea that adult women like Courtney, me, and thousands of others could, in fact, have something in common with hyperactive boys. While there were speakers—life coaches and ADHD professionals and therapists and former recording artists (including Solden's husband, Dean)—the affair was avowedly anti-conference. The "ADD-friendly pep rally," as Solden deemed it, was designed around the specific fears women had voiced about coming, like not knowing anyone or having to sit still for ten hours.
We had journeyed from all over the world, most of us alone and many of us terrified, to a charming, albeit muddy mill house to commune with others like us. Despite the day's persistent grayness, the grounds were outfitted with summery private nooks—lawn chairs with pillows, hammocks, a breezy tent with crafts—for women to retreat if they became overwhelmed. There was a display of paintings, collages, and jewelry women had made to commemorate the day and their disorder. There were lawn games. The schedule was punctuated with hangout sessions instead of breakout sessions, as well as activities like yoga, improv dance, and arts and crafts.
People told me, 'You need to study harder!' But there was no one who studied harder than I did.
Solden stood on the main wooden stage, addressing a crowd of 100-something women, aged 20 to 70, and a handful of men, all seated at round, white tables in a large heated tent. Solden, who has a smooth brown bob and wears expertly applied makeup, smiles when she speaks and manages to exude a warm, encouraging energy even when she's talking about the "wounds women carry with them."
Settling in at a table of women I'd met that morning, I took a moment to appreciate that an objectively terrifying premise—being emotionally vulnerable with strangers in a rural location—had become almost instantly cathartic. Not working double-time to hide my ADHD felt like one giant exhale, like relaxing in a hot tub after a long day of cleaning the cereal out of my bed frame. I wasn't questioned for picking at my cuticles or scribbling in my notebook during a long presentation. (Scribble notebooks were strategically included in the welcome bags.) When I told my table that I couldn't really see because I'd just lost my second pair of glasses in two weeks, I was met with solemn nods of understanding.
"My kids have to sit through church extra long because I bring them there so early," a woman at my table told me. ADHD women often have one thing they're experts at controlling, whether it's time management or pencil organization, helping them maintain a semblance of structure in their otherwise chaotic lives. Her thing is time; she gets places early. I grabbed her hand. "That's my thing, too! It's truly uncool."
Regina Carey doing a demonstration at the Better Together Festival. Photo by Howard Morris/Maciejka (Em) Gorzelnik. Courtesy of Morris Creative Services LLC
There were many big health revelations in the early 90s. Aspirin can help ward off heart attacks. Trans fats are a thing, and bad. There was also the lesser-known discovery that adults, in addition to hyperactive boys, could have ADHD. Several revelations followed in quick succession: You can continue to have difficulties even if you lost your hyperactivity. You never even had to have hyperactivity to have ADD. When Solden, who was then working with individuals, couples, and groups with "invisible disabilities" at a counseling agency, got her hands on the book You Mean I'm Not Lazy, Stupid or Crazy?!, written by Peggy Ramundo and Kate Kelly in 1993, she started putting the pieces together.
"Many of my clients were saying stuff about disorganization, but the women were also much more ashamed about it," Solden told me. "We started looking at the gender differences—not even so much in how they manifested, but how women felt about them, due to these culturally idealized roles. We had a feminist kind of perspective. It was really about what happens to women when they can't meet those expectations."
Expectations include, but are not limited to, remembering to make dinner, keeping track of the kids' homework, removing wet laundry from the machine before a week (or more) passes. Many women felt crushed when they couldn't perform these seemingly basic tasks, surrounding them in a cumbersome, unshakeable fog of shame. But because the idea that women could have ADHD wasn't mainstream, they had no framework to understand why they couldn't sit still during their kid's five-minute talent show set.
Despite increasing awareness that women can have the disorder, the shame part has stuck around. Solden still encounters clients who are paralyzed by the embarrassment of not meeting these "deeply embedded expectations" of how a woman should be.
OK, you're distracted, but it is a pretty color, so enjoy that.
"At the end of the day, if you're just dealing with ADD, that's great," Solden said. "But most women—because they weren't diagnosed as children, because they didn't have hyperactivity or were smart—grew up absorbing a lot of wounds and shame. These women are often twice exceptional. They have incredible strengths and are really smart and creative, but they have these struggles that nobody understands, including them."
Terry Matlen, a clinical social worker and psychotherapist who was diagnosed with ADHD in her 50s, told me that this sense of hopelessness and regret can linger, especially for women diagnosed much later in life.
"Many women I work with talk about the sorrow that they feel," Matlen told me. "The sadness of the lost years, knowing what was lost. The most bothersome thing for me is getting emails all the time from women all over the world, saying: They say I have depression. They say I have anxiety. I'm not getting any better."
In 1995 Solden wrote Women with Attention Deficit Disorder, a work largely acknowledged within "the tribe" of adult ADD professionals as pioneering for recognizing the centrality of gender role expectations on a woman's self-esteem. Many women came to the festival because of that book; many of them recognized themselves in the "slob" or "space cadet" identities that Solden attempts to dismantle, piece by piece, in her work.
When Matlen began researching adult ADHD in the 1990s, she recognized her own idiosyncratic behavior in those pages.
"I have two college degrees—why can I do that, but I can't figure out how to get to a grocery store?" Matlen said. "Stuff that seems so easy, like remembering to get my kids' papers back to school, I couldn't do. People don't always get me."
In 2013, a Centers for Disease Control and Prevention study found that 6.4 million children between the ages of 4 and 17 had received an ADHD diagnosis at some point in their lives, up 16 percent since 2007. This is, understandably, terrifying, and has colored the coverage of ADHD in the media, where the current line is that kids (read: boys) are being over-diagnosed and over-medicated. Early clinical studies in the 1970s focused on hyperactive white boys, which shaped the diagnostic criteria we still use today, making it very difficult for girls—let alone women—to get diagnosed if they don't behave like hyperactive white boys. So as the serious conversation surrounding misdiagnoses and stimulant abuse dominates the public perception of ADHD, there's an estimated four million girls and women who are not receiving the treatment they desperately need because no one realizes they have the disorder. (A 2009 study from the University of Queensland found that girls displaying ADHD symptoms are less likely to be referred for mental health services than boys.) Even those who manage to get diagnoses can't always escape the embarrassment of having a condition that doesn't look the way people expect it to. You always have to explain yourself. Or, if that's too exhausting, hide.
Photo by the author
ADHD symptoms can appear later in girls than they do in boys, which challenges the common perception that the disorder is a kid thing. The symptoms are also different—think less running around a classroom throwing Cheez-Its and more having a nervous breakdown because you lost your passport somewhere in your laundry basket, which is really just a trash bag at the bottom of your closet. A 2005 study published in the Journal of Clinical Psychology notes that girls' ADHD symptoms are "less overt" than the disruptive behaviors typically seen among males, which further blocks girls and women from getting diagnoses. The lack of treatment is the scariest part; according to the American Psychological Association, girls with ADHD are two to three times more likely to attempt suicide or injure themselves as young adults than girls who do not have ADHD.
In her keynote speech at the Better Together Festival, Dr. Ellen Littman, who wrote Understanding Girls with ADHD in 1999, recalled once hearing men refer to girls as "ADD wannabes" at a conference.
"Rather than allow the point to be dismissed, I argued vociferously," Littman said. "For any of you old enough to remember the 'Point/Counterpoint' skit on Saturday Night Live, we were one step away from 'Jane, you ignorant slut.'"
In a hangout session called "Powerful Ways to Be Present," a life coach named Regina Carey was demonstrating how to use your body to derail destructive thoughts. A woman lay on a hammock behind her, nodding, and other women stood or sat in lawn chairs around the tent—some coloring on pieces of paper, some drinking beer, some standing up and sitting down on loop. Carey, who has a face so kind and expressive you'd join her cult if she had one, wore a black sweater covered in a collage of text: "Even if you are emotionally distracted, do you find that there are times when your power of concentration is laser-beam intense?" "Are you usually eager to try something new?" "My room may be a mess. But it's an organized mess. I know where everything is." "ADHD."
Women with ADHD tend to berate themselves internally, and constantly. As most are diagnosed years after their symptoms first manifest, they've grown accustomed to blaming themselves for their inability to "get it together" and do the things that most mothers, daughters, and humans can do. Remember appointments. Arrive at their jobs on time. Have jobs. Meet deadlines. Not lose the milk you could have sworn you just bought. It's common to end up fixating on these perceived failures. Carey told us to comment on our breathing—neutrally—whenever we find ourselves slipping into dark rumination spirals. "Now I'm inhaling. Now I'm exhaling. My breath is shallow, huh."
I have two college degrees—why can I do that, but I can't figure out how to get to a grocery store?
After the session, I ventured to buy a glass of red wine because someone I cared about wasn't texting me back. When I arrived at the bar, I couldn't feel the hard trace of credit card in my back pocket, so I squatted down on the ground and removed the contents of my backpack. I found the loose card three minutes later, wedged in the pages of my planner.
Anyone who knows me knows this look well: hunched, flinging objects, muttering.
"I'm a mess!" I said, instinctively, to a woman who asked me if I needed help. "I really should get a wallet." This line usually kills. In the real world, the idea of not having a wallet to store your credit card, cash, and ID is so wacky as to be laughable.
"It's OK," she said, getting down on her knees to help me put my camera, old apple, headphones, cell phone, receipts, receipt-wrapped gum, and pen caps back into my backpack. "You're OK here."
Photo by Howard Morris/Maciejka (Em) Gorzelnik. Courtesy of Morris Creative Services LLC
Sari Solden speaking at the Better Together Festival. Photo by Howard Morris/Maciejka (Em) Gorzelnik. Courtesy of Morris Creative Services LLC
Anne Marie Nantais was diagnosed with ADHD five years ago, when she was 40. She loved her job as an elementary school teacher—and was good at it. Teaching had kept her hyper-focused for 19 years, but she was finding it more and more difficult to perform the basic tasks the job required. "Dealing with undiagnosed ADHD and the increasing demands of paperwork and being a part of a high-performing teaching team was taking its toll," she said.
At the festival, Nantais, now a full-time life coach, read what Solden calls a "turning-point story"—the moment when her perspective on her ADHD shifted—on stage. Her eventual diagnosis wasn't the turning point, as it is for some—Nantais continued to feel ashamed as she tried to hide her diagnosis from her neurotypical coworkers. Women diagnosed later in life can experience burnout from the exhaustion of concealing their symptoms, a phenomenon known as a "mask of competency"—the extraordinary lengths ADHD women go to conform. "They may be rigidly hypervigilant about controlling their behavior, investing extraordinary amounts of energy in the goal of maintaining a seamlessly 'appropriate' façade," Dr. Littman wrote in a 2012 essay. "This may prove effective in the short-run, but it comes at a heavy price: as they pursue the perfectionistic demands they deem necessary, they are constantly burdened by anxiety and exhaustion. Struggling to do what appears effortless for other women, they feel like impostors, fearing discovery at any moment."
Nantais found that medication alleviated some of her symptoms, but none of the shame.
"Because I lacked education and information about ADHD, I still had deeply held beliefs about the JUSTS," she said in her presentation. "If I 'just' tried harder, was 'just' better at managing my time, or if I could 'just' get a handle on organization, I could fix my ADHD."
A major discovery for many women is that they aren't stupid or bad. Rather than laboring to maintain a "mask of competency," Nantais allowed herself to shape her environment around her ADHD brain.
"Reframe the lens," Littman said in her keynote speech at the festival. "Create one that's more realistic. You have the ability to look at the same reality, but have options."
Photo by Howard Morris/Maciejka (Em) Gorzelnik. Courtesy of Morris Creative Services LLC
Sarah, a 26-year-old part-time yoga instructor who works full-time at a corporate sales job, is an expert re-framer. Diagnosed her sophomore year of high school, which is early (and lucky) compared to many women at the festival, who were grappling with the sorrow of "lost years," Sarah has been on everything—Ritalin, Vivance, Concerta, anti-depressants. Now, she takes nothing. For many women, myself included, medication is at once a game-changer and source of shame, as the national discussion surrounding stimulant usage zeroes in on abuse, addiction, finals cramming, college partying, weight-loss scheming, and professional maneuvering. (There are very few impassioned op-eds about Adderall improving the quality of some people's lives.) At the Better Together Festival, being prescription-free is neither a victory nor a loss, but is, unequivocally, stigma-free.
In the art tent, Sarah told me that she's recognized some things will always come a bit more challenging to her, "especially in a corporate setting." With my left hand I put cake into my mouth and with my right, I clawed at dried icing on my jeans. The philosophy behind yoga —largely Buddhist—has helped her with the reframing, she said.
"It takes such an observational stance on everything you experience; you watch it happen," she said. "'Oh, I'm distracted by this pretty color, even though I should be focusing on this report that the boss needs by the end of the day.' OK, you're distracted, but it is a pretty color, so enjoy that. You have to believe in the power that other people are able to adapt."
I wanted to say: I promise I'm listening, but there's icing all over my pants. Classic me! Maria "A Mess" Yagoda! Laugh track. But I stayed quiet and continued feeding myself cake. I focused on her words.
"Maybe I'm not the perfect corporate person—I'm okay with pushing boundaries," she said. She explained that there are hard deadlines and soft deadlines, and she had to learn figure out which is which. I write "soft deadlines" in my notebook. I circled it three times. "'I know you want it by this time, but I need this space to get what you need done.' If that doesn't work, [the task] needs to be reassigned."
While the arc of the moral universe may bend towards adaptability, Sarah's experience isn't necessarily the norm quite yet. A woman told me that one of her clients recently got frustrated with her for always being a few minutes late. "I had to tell her, this is not about you, it's about me," she said. When I lost the company credit card, my credit card, company keys, and my keys—all within the span of two weeks— at a job a few years ago, my boss did not understand and was frustrated. I, too, did not understand and was frustrated; it's the sort of thing that's hard to adapt to. Now, I work triple-time to hide these quirks of executive functioning that, more often than not, make me feel stupid.
But here, at the festival, "stupid" was just an adverb I paired with "beautiful" to describe the deep-fried cheese curds I'd eaten the night before.
I took my last bite of cake. I left the icing on my pants.
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