What does ADHD really feel like?

A few months ago, Sarah Shearman came across a diary she had kept in grade four. One entry read: “My mother wants me to settle down and do my homework! Doesn’t she understand that I need a break? I need to get out of my room! But she won’t let me!”

Sarah, now 26, can’t remember what she actually did during those long hours in her room. But it usually wasn’t her homework. “I’d be in there for hours and I wouldn’t get anything done,” she recalls. “Sometimes I’d fill entire pages with doodling.” But Sarah does vividly remember how she felt: frustrated, anxious and, at times, consumed by an overwhelming urge to move. She felt that at school, too. Sarah was eventually diagnosed with ADHD, but not until grade 12.

Kids who have ADHD can’t usually put into words how they think and feel because it’s their “normal.” They don’t know another way to be, or realize that other children’s minds function differently.

“It’s like your mind shuts down because you have to put so much effort into policing your brain,” says Nick Weiss*, 28, who was diagnosed at age 11, as he describes the difficulty he had trying to buckle down to do school work. “It’s not impossible to make yourself focus, but you have to keep forcing yourself to focus over and over again, every step of the way. It takes so much mental energy that there’s nothing left to put into doing a good job on the work you have to do.”

Can he recall how it felt, physically, at those moments? “Butterflies in my stomach,” he says. “Anxiety, I guess. But there was more to it – a feeling of mental dizziness, almost like swooning.”

Read more: Anxiety disorders in children >

Sarah also used the word anxiety. “I remember being in class and feeling like I was going to explode if I couldn’t get out of my seat,” she says. “My heart rate would go up. I felt like I was crawling out of my skin.” Her coping method was to leave class.

“I’d ask to go to the washroom and then I’d just take off. I had my route. I’d go up and down the staircases and halls. I’d talk to other kids I met. Anything to get away from that feeling.”

Nick had a different approach. He learned not to care about getting his school work done. “If I stopped thinking about what I had to do, the dizzy feeling went away, and it was much easier to cope with being at school,” he says. The distraction we hear about in kids with ADHD may well be a by-product of the incredible mental, and even physiological, effort of trying to sit still and stay on task.

Twenty-year-old Adam Cormac* recalls a different feeling. “I was annoyed and bored,” he says. “I found school unmotivating, so I didn’t absorb the material. Teachers would question my intellect, and I hated that. I didn’t think there was anything wrong with my mental functioning.” Adam says he often felt either singled out or patronized. “Even well-intentioned strategies – like tapping on my desk as a discreet way to remind me to focus – were irritating,” he explains.

Of course, Adam admits he didn’t often get down to work on his own. The result was frustrated teachers, frustrated parents, and a very frustrated boy who struggled in school and seldom engaged in academics until after high school. Now, after a two-year break from formal education, he’s going to university to study physics – something that really interests him.

“I know it sounds simplistic: Just make school less boring,” Adam says. “I realize that’s easier said than done, but people should think more about it because when I was interested, I could pay attention, and that applies to other people I know who have ADHD.”

Sarah agrees that adults often misunderstand and misinterpret kids with ADHD. “The doctors, my parents and teachers thought my problem was anxiety,” she says. “And it was, in a way. But they thought I couldn’t focus because I was anxious. Really, I was anxious because I couldn’t focus. I tried to tell people that, but they didn’t listen. That’s why it took so long to get the right help.”

Read more: Kids and anxiety >

Just listening to a child with ADHD is one coping strategy that can get easily lost in the shuffle. Parents, understandably, often focus on getting their kids assessed properly, agonizing over treatments and finding the right help at school. They also can’t help trying to “fix” their kids to some degree. That means extra supervision, more reminders and teaching the same things over and over again, all while trying to stay positive.

But, as these young people explain, trying to force kids with ADHD to be just like their peers can wear them down. Nick urges parents to take the time to focus on understanding their children’s differences and working to accept them as they are, even while trying to help shape their behaviour so they can thrive at home, school and in social settings.

“Rather than just talking about how they need to be different or do better, talk to your kids about what life is like for them, without trying to fix everything,” says Nick. “If your kid says, ‘School sucks,’ don’t just try to make him look at it more positively. Have more meaningful conversations than that, even if it’s hard at first. It will get easier. Behind the lazy, oppositional behaviour that many adults see in kids with ADHD, there’s a lot going on that people don’t understand. Parents should keep talking to their kids so they can find out what’s really beneath the surface.”

A version of this article appeared in our September 2013 issue with the headline, “What does it really feel like?” p. 111.