Spring Cleaning: Living with ADHD

Today started—at 11am—with a very strong craving for pepperoni pizza. So I went to Harris Teeter for things to throw on the grill for dinner tonight and on the way back I picked up the aforementioned pizza at our local Dominos. After we ate, I wanted to sit on the front porch and hammer out something that resembled a coherent blog post because I realized yesterday that I haven’t written anything in months! It’s now 4pm and I’ve finally finished bleach mopping the porch, scrubbing the railings and banisters, and wiping off all the pollen from the tables and chairs so I can sit down and concentrate on writing. All I wanted to do was sit down with my laptop and write.

In case you’ve ever wondered, this is what ADHD is like on a daily basis. Minute by minute the self-regulation of thoughts, feelings, and actions is on a razor’s edge between control and chaos. And I took my meds today, too. This isn’t the raw, spontaneous fury of unmedicated ADHD, this is the smooth and regulated flow of medication in action. The disorder is horribly misnamed and that, in part, has led to the tremendous misunderstanding of what ADHD is, how it works, and why it hurts everyone it touches.

This is a topic I’ve circled for a long time, never really sure if I wanted to write something about it or to describe my personal experiences for fear of focusing a spotlight on myself and inviting the scorn and ridicule of the public—the stigma of mental health is pretty intense. And to be honest this is not what I had planned to write about, but as I sat down just now and began to type this is what came out.

Attention Deficit, Hyperactivity Disorder is poorly named; in fact, a better name for the disorder would be Self-Regulation Deficit Disorder, or SRDD. This comes, almost verbatim, from Dr. Russell Barkley‘s many lectures on the subject. And at the risk of sounding as though I’ve bought into his theories hook-line-and-sinker, I have to say, as someone who has lived with ADHD his entire life, that Dr. Barkley’s explanations of the way ADHD impairs function and disrupts behaviour come the closest to what I have experienced every day for nearly 30 years.

I was diagnosed with ADD in the third grade after a week of tests and doctors visits. I was eight years old and had absolutely no idea what was going on. At the time no one explained anything to me, I was just going along with it because my mother seemed very concerned and stressed by it all—and, let’s be honest, I was eight years old, what exactly was I going to do to protest any of this? A few days later, on a Saturday, my parents gave me a small yellow pill and asked me to swallow it. They told me it would help me at school and that we were going to try it on a non-school day to see how it worked and make sure I was okay with it. I had never swallowed a pill whole before in my life. And I was fine.

So from the third grade until the ninth grade I was on methylphenidate, which is the chemical name for the drug Ritalin. Over time we switched doses and delivery mechanisms, from 5mg immediate release tablets to 36mg sustained release capsules—by the time I stopped taking medication for it in high school I was taking Concerta, which is the same drug as Ritalin but lasts much longer because of how the pill releases drug into the body. It helped tremendously in school, but I had a lot of the negative side effects of stimulant medications and by the time I was in the ninth grade—and thought I knew everything there was to know about the world—I decided that I didn’t need to take my meds anymore. So I stopped.

The last three years of high school and the entirety of my college career were an awful, uphill struggle, but I was too proud to ask for help and too ignorant of how the healthcare system worked to find a doctor and get myself back on meds. As a result, I have a lot of regrets from my academic career. But that’s my fault, and I accept the responsibility for that. Help exists, I was just too proud and foolish to avail myself of it.

Fast-forward to the present day and I’ve gotten myself back on meds and can function much better and more smoothly because of it. But that doesn’t mean that I’m cured. Every day is still a struggle, as it is for every person with ADHD. The simplest of tasks can seem insurmountable. And that’s because at it’s very core ADHD is largely an inability to self-motivate and regulate one’s own immediate reactions and responses to stimuli. That’s why someone with ADHD appears to get stressed and frustrated by the smallest things at a pace that surely boggles the mind of the observer—from 0 to 60 in no time, flat.

As Dr. Barkley explains cognitive functions, there are four “executive” functions of the brain and they have to do with self regulation in different areas. They are: nonverbal working memory, internalization of speech (verbal working memory), self-regulation of affect/motivation/arousal, and reconstitution (planning). Together these cognitive abilities allow a person to direct their own actions towards a goal and to delay the rewards/consequences of their actions to a time/place in the future as yet undefined. It is the impairment of these cognitive functions that results in ADHD, or SRDD. In children these impairments manifest as an inability to stay quiet or stay seated (this is the “hyperactivity” portion in the name of the disorder), stay on-task in school or home life (and this is the “attention” portion in the name), and volatile emotional responses as well as impulsive behaviour, which is often what leads to the observation of restlessness, distraction, and emotional volatility. In adulthood much of the external hyperactive behaviour becomes internalized and leads to constant and uncontrollable rumination, frenetic thoughts, and increased distraction; short term memory also suffers to varying degrees and tends to be significantly more impaired as age progresses. (Dr. Barkley does a much better job of explaining this, and in greater detail, than I do.)

This afternoon I collected my laptop and phone, a drink, and the power cable for my computer and stepped out onto the front porch. When I looked at the chair I saw that it was covered in pollen, along with the table next to it, and so I set my things down and went back inside to grab some Windex and a rag to clean it off so that once I had finished writing for my blog I wouldn’t have to worry about bringing a cloud of pollen back into the house with me. As I wiped off the armrests and table, I figured that I should do the other chair, too. And once I had, I decided it wouldn’t take much time to wipe off the porch floor with a wet mop, so I might as well do that too. Three hours later, I’d cleaned the entire porch. One thing lead to another and before I knew it, I was neck-deep into a project I’d never intended on starting.

Most days, especially if I don’t have medication on board, it’s a battle just to get up and do something, even if I want to do it, it is still a struggle to motivate myself to take action to do so. This is not laziness, I assure you, this is a real and true inability to motivation my own actions and it is incredibly difficult to explain and relate to another person. That’s the part that people who do not experience the disorder first hand find so difficult and challenging to understand. Even I admit that it sounds completely absurd! The commentary frequently sounds something like “How is that even possible, that you’re not able to motivate yourself to take action with even the most basic and common tasks? Surely that’s not a real thing, that is just laziness and it’s been given a name by the pharmaceutical industry in an effort to sell more drugs.”

I promise you, dear reader, this is real and has been a recognized and studied condition for over one hundred years. In fact, ADHD was first described in 1846 by Heinrich Hoffmann, a mental health physician in Frankfurt. It wasn’t until 1902 that the disorder was given a name for the first time by British pediatrician Sir George Still, who called it an “abnormal defect of moral control.” Later, in 1968, the DSM-II gave the disorder its first specific name, “Hyperkinetic Impulse Disorder.” In 1980 the current name for the disorder began to appear with the release of the DSM-III, Attention Deficit Disorder, and later still, in 1994, that the H was added, making the name Attention Deficit Hyperactivity Disorder. So for those of you who say that ADHD is not real, or that it’s a very recent creation of pharmaceutical companies—a conspiracy between pharmacists and physicians to sell more pills, please understand that the history of the disorder is a long one and it is a very real condition. There is compelling research to suggest that the causes for ADHD are physical, neurological developmental delays in specific regions of the brain that give rise to the aforementioned executive functions; and a plethora of case studies and family histories that show ADHD runs in families and may even be inherited genetically.

But I digress, on days like today when I do have meds on board (which, for me, is most days) every action is part of that delicate balance between staying on task and diving head first into a series of every more tangential tasks. And that’s how it is for a lot of people with ADHD: the disorder doesn’t just go away when you take the drug, it merely becomes more manageable to direct the whirlwind. At least today the tangent was a useful task and the front porch is nice and clean.

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