By Michelle Seitzer
“Sometimes my brain just gets stuck” is one of many ways my daughter has described how it feels to live with ADHD, autism and other related diagnoses.
“Sometimes I just need you to help me get started” is how my partner with ADHD explains the motivation struggle, particularly when the task feels overwhelming.
I’ve learned so much over the years of being married to — and parenting — someone with an ADHD diagnosis. But I learned even more after talking to five young people with ADHD. Here are highlights of conversations with Michaela, age 20, a nursing school student from Harleysville, Pennsylvania; Riley, age 13, a middle school student from New York, N.Y.; brothers Corban and Quinn from California, ages 23 and 18; and Paige, 18, also from California.
How did you feel when you got an ADHD diagnosis?
“It helped, knowing that I knew what was wrong — but didn’t know what to do about it. I was just stuck,” Riley says of her recent diagnosis. “Now instead of stuff piling up and not knowing why, knowing is the best part. And now I can find ways to make things better.”
Her recent diagnosis was validating, Michaela says.
“I’m not crazy,” she says. “I think girls are often diagnosed later in life because we’re not typically bouncing off the walls, but we’re more likely to be daydreaming.”
But when she recently applied for her dream externship, Michaela says, she struggled with this question on the form: “Do you have any disabilities?”
“I preferred not to answer,” she says, “because there are still stigmas, and there always will be.”
But Michaela advises the newly diagnosed — at any age — not to get caught up in labels, even though a diagnosis may feel overwhelming.
“ADHD is a part of me, but it’s not all of me,” she says. “Everyone’s identity is made up of so many parts, and ADHD is just one of them.”
“(I felt) fine. It didn’t change the way I saw myself or anything,” says Corban. “I saw it almost like a super power, like I had more energy and drive than anyone else. Now it’s more (like) something I deal with everyday.”
“I was just confused because I knew it was similar to what my older brother had but not really,” says Quinn. “I also knew it would be confusing for my parents to figure out how to parent two kids with the same yet different diagnoses.” (Quinn was diagnosed with inattentive ADHD, Corban with classic hyperactive ADHD.)
“Another thing that’s been tough is the whole ‘We’re going to dedicate special time to support you’ that took time away from other things,” he explains. “It made me feel stupid because I had to spend more time on, say, math support or study skills that other kids didn’t need, and I missed out on fun options.”
“I didn’t understand the diagnosis, even though my parents and a doctor told me about it,” says Paige. “I got my 504 in 5th grade, which was young” (A 504 plan is named for the section of a 1973 disability civil rights law that calls for educational accommodations for kids with certain conditions, including ADHD.)
“It created a label that I wasn’t good enough because I needed (more) time than ‘normal’ people to complete things.”
What’s the hardest part of having an ADHD diagnosis?
“The hardest part for me is knowing that school is going to suck,” Riley says.
Riley says most of her teachers are older and have been there for years. “They know what ADHD is but they don’t know how to deal with it. They’re trained in only one way of teaching,” she says.
Because of this, Riley says, she feels the extreme pressure of adapting her learning style on her own. “I basically have to make the accommodations myself,” she says.
Riley knows she’s not alone. “Most schools aren’t set up for kids with learning differences,” she says. “There are other students like me who are struggling and need a different style of teaching.”
She says it’s not a matter of ability. “For me, I can read an assignment — I can do it — but I need it to be taught in a different way,” she says.
“It can be so exhausting,” Michaela says. “Even though you can go, go, go, you’re constantly fighting your own brain to make a cohesive thought. And it really takes a toll.”
Before her diagnosis, Michaela was a straight A student and typical overachiever. It wasn’t until she got to nursing school and really started struggling with exams and burnout that she realized something needed to change. “I was doing horribly and just couldn’t learn,” she says. When she got the diagnosis, she recognized that even though she had been successful in high school, the challenges had always been there.
While she still struggles with the symptoms of ADHD, medication and other strategies help clear some of the mental fog — and give her the ability to recognize when she’s being distracted.
Even though medication has made a huge difference for Michaela, getting started on a regimen didn’t come easily. “I cried in the provider’s office,” she said. “There’s a long history of addiction in my family, so the fear was real.” But taking a nurse’s point of view turned things around for her.
“I would think about my patients, and how I’d want them to take medication if it would help them,” she says. Now that she’s been consistently taking ADHD medication, Michaela says, “it feels like a weight’s been lifted from my own brain.”
“The worst part is going back and forth between thinking my ADHD isn’t that bad to my ADHD is literally controlling everything I do,” he says.
“The diagnosis and symptoms are different for every person, so trying to figure out what works for you is different from what works for others,” he says. “Trying to manage all of it is a lot.”
“The label itself makes you conform to things that you may not normally think about yourself,” she says. I’m someone who has been diagnosed with a lot of things — OCD (obsessive compulsive disorder), depression and epilepsy — all diagnosed around the same time. When you have several diagnoses at once, that’s a lot of labels. All the labels
made me feel like I was supposed to be this way, or not good at some things. And it held me back, especially growing up, because I was diagnosed with ADHD at 10 years old.”
What are the things that help you most with managing the challenges of ADHD?
“I try to do everything in a planned-out way,” Riley says. Sometimes, she seeks cues from what her peers are doing, Riley says. If she gets stuck, she either ignores the problem or tries to find a work-around. But she often needs help getting started. And her struggles with procrastination come from a place of anxiety.
“I usually don’t want to get started because, A, what if I don’t get it done on time? And, B, what if I do it wrong?” she says. “And then I start crying.”
“I’m constantly learning how to manage it,” says Michaela. “But psychologists and psychiatrists are still learning how to manage it too.”
What’s been incredibly helpful to her, particularly now that she’s living on her own as a college student, Michaela says, are the tips and tricks she’s discovered on social media. “There are some great ideas there,” she says.
One of the best ideas — which she says she uses daily — came from TikTok. It caught her eye because morning is a hard time of day for her. There’s a lot to do to get out the door on time, but it takes a little while for the medication to kick in. (That’s why she says she thinks some of the new formulations of ADHD medications, including a slow-release that starts at night, are the “most genius thing.”)
Based on the social media tip, Michaela made bracelets for each of the things she needs to do before leaving for school or work. “They say things like: ‘Take a shower, make your bed, etc.’ And as I complete each task, I take off the bracelet,” she says. “They were fun to make, and it helps to have something I can feel and see as a reminder. The tangible piece of it really makes a difference.”
Michaela adds that “it’s trial and error, to find what works for you — and it’s important to be gentle with yourself through that process.”
“Meds and gum” is what Corban says help him manage his ADHD.
“It’s easy to find out more about ADHD nowadays than probably it ever has been,” says Quinn. “A lot of social media is focused on mental health, including ADHD, and it’s really helpful to self-diagnose things you’ve noticed but didn’t realize were part of your ADHD. Like, ‘Oh, hey, that thing I’ve been worried about? It’s normal for people with ADHD.’ “
The ADHD community is what helps her the most, Paige says. “I know a lot of people with ADHD who support me and make me laugh. I’m not medicated anymore, though I know a lot of people who are, and we can talk our way through it together.”
What do you wish other people knew about having ADHD?
“People think it’s just in your head,” Riley says. “But it’s not an on/off switch. We’re not choosing it. We literally cannot do it.”
It takes time to set up a system, or a different way of doing and learning things, Riley explains. And, besides the time it takes to acclimate to that system, it’s not a simple process. “I would give anything to be out there thriving like my peers,” she says.
“Just because you don’t see the challenges, doesn’t mean they aren’t there,” Michaela says. “I might not be bouncing up and down in my seat or tapping my pencil on the desk, but my brain is. My brain is hyperactive. And it’s hearing every pencil tap, or noticing every light that turns on or off, or watching someone walk past the window.”
Michaela says the visible distractions can be so overwhelming, even though the feelings of overwhelm are basically invisible. “People think you’re OK when you’re not,” she says. “And we’re not lazy. We need to normalize that this is how our brain works.”
“When I interrupt you when you’re telling a story, I’m not trying to be rude,” Corban says. “I’m just excited about the story you’re telling, and I’m personalizing it. Then I’ll tell you a story of how I relate to that.”
“ADHD isn’t the same for everyone. Even people with the same ADHD diagnosis will act differently,” Quinn says. “My brother has classic hyperactive ADHD and I have inattentive ADHD, which made it harder to diagnose my ADHD because it didn’t look like his. My brother can’t sit still, whereas I can sit still and do nothing, which makes me appear lazy to those who don’t understand.”
“What I wish people knew about ADHD generally is different from what I wish they knew about me personally,” she says. “Generally, people need to understand that there are different types and different types need different things, especially in a classroom setting. A lot of educators don’t understand that each person with ADHD needs something different.”
She adds: “Me personally, it’s a lot of pushing and pulling. One day my ADHD will be more apparent than OCD; some days it feels like it’s not a matter of if I will fail — it’s when. I have so many intrusive, overwhelming thoughts. It’s one of those things you learn to deal with even though it sucks.”
Read more about why girls with ADHD are often undiagnosed or diagnosed very late in The Daydreamer: Why ADHD in Females Is Underdiagnosed.