Attention to inattention, an advice heard since elementary school, but which I would never have put down to a developmental atypicality – a phrase that intimidates and prevents the acceptance of an obvious reality: at least 1 in 10 people is diagnosed with Attention Deficit Hyperactivity Disorder, ADHD, formerly publicized by American society as ADD [*]. I say ‘at least’ because, despite the high number of ADHD diagnoses made in North America, the global tendency is to deny the existence of symptoms altogether, or to overlook the importance of a correct diagnosis.
For me, as for many others, ADHD was an urban myth. I probably wouldn’t have heard of the term ‘hyperactivity’ if my parents didn’t know some friends whose daughter had a diagnosis. She ticked off all the symptoms well before the age of 6, the age at which a child is officially diagnosed. She could never sit still and had great difficulty at school. After her mother, a psychologist, exhausted all alternative treatments, she turned to medication. I remember my parents at the time constantly bringing up how ‘mushy’ the little girl had become later, or how grateful they were for not having such problems with me.
That’s how the image of attention deficit (which implies much more than the name suggests!) was ingrained in me: a form of mental retardation, even disability. Movies and TV shows were silent on the subject, and the doctors I went to for various reasons had never suggested there was anything wrong with me.
It never occured to anybody since as a child I was quiet, I watched movies and theater shows with maximum interest, and I didn’t particularly enjoy running or climbing trees. Moreover, I had, according to some, a developed vocabulary and rarely had problems learning.
I was just talking a bit too much. And more often than not, it was hard for me to refrain from interrupting adult conversations. I was asking a lot of questions. I most probably inherited it from my father, because he was always talking, going from one topic to another. A nagging habit, among the many others he had, and hard to fix – that was how he was perceived.
The decision to be enrolled in school after the age of 7 was made by my mother, after drawing up a table with several arguments in favor of an extra year of ‘childhood’. I was too disorganized, inattentive and constantly talking to friends. Even in the teacher’s view I was far behind the other children in the group.
They expected me to grow out of the stubbornness of childhood, the time spent ‘in my head’ and the tantrums. At school, however, I came up against an even more rigid framework in which I had to excel in all subjects, pushed by my parents. How could I explore novelty – something I have always sought – if I was never allowed to ‘waste time’?
Since middle school, I have had difficulties in the STEM subjects. In the evenings, my father filled in as a math tutor, without much success. I used to (and still do!) get the arithmetics wrong all the time. I couldn’t hide my boredom caused by the abstract explanations: my face showed that I was thinking elsewhere. I was procrastinating doing my extra homework, looking for a loophole – either making excuses that I didn’t know how to approach the exercises, or boldly copying the results from the end of the book, ignoring the risk of being found out by my father, exasperated by my behavior. He knew I was ‘intellectually capable of more’. Still, sometimes I did well in math. I had so-called ‘moments of inspiration’, slightly more unusual ideas that in a convoluted way led to solutions.
In between ballet and guitar lessons suggested by my parents, I was working on my own projects. Like Barbie, I explored, one by one, being an interior designer, writer, sportswoman, actress, actress, photographer and programmer (until I discovered that math is indispensable there too).
The only thing my hobbies had in common is that none of them I have ever completed.
I wanted to fight against the rules from home – I liked to talk loudly and make all kinds of jokes, to sit in the school playground after school without worrying about homework. I felt most comfortable in my small group of friends because there I knew I was appreciated for the natural effervescence of my personality.
I had realized that my parents didn’t like my ‘noisy’ side and didn’t listen to my interests and wishes. And why would they if all my interests were destined to be abandoned? From their point of view, I was acting to attract attention and shock. In reality, I was in search of balance, perfection and to suppress what everyone, including me, thought were bad morals.
High school didn’t give me the freedom I coveted, either: I suddenly found myself deprived of my parents’ well-established structure. High school finally gave me what I wanted so badly – the opportunity to organize my life the way I wanted. Paradoxically, designing a schedule to my own liking seemed impossible. In my mid-teens I felt more confined than ever. I didn’t get into the high school I wanted. Of course I hadn’t worked hard enough, something I was constantly reminded of.
Without the obligation of an exam, I was tempted to stop studying. However, I didn’t. Although the struggle with lack of motivation was to become recurrent, I gave myself a chance to prove myself wrong – maybe I was able to overcome the difficulties.
My high school profile is centered around subjects I struggle with. While my classmates’ physics homework only took an hour, it took me three times as long. I wasn’t concentrating enough even without distractions. I knew that once I sat at my desk, whether I was in concentration mode or not, I was doomed to ‘wasting time’. Neither the written not the oral tests were causing me the guilty conscience they used to.
How can I function in a society with a pace that I can’t keep up with, where each age is a deadline with a certain threshold of achievement?
Suddenly the mental buzz of ideas and plans was gone. I had given up looking for the next experience to get excited about. I had somehow decided that I was better off on my own. From skipping class, I moved on to refusing invitations to go out with friends. I would never have guessed that a person who normally recharged with the energy of other people would ignore messages and calls. Weekends spent staring at the ceiling have turned into weeks of vacation. I was physically and mentally exhausted. My back was constantly aching from hours spent lying in bed. This state was worse than any boredom, in the past one of my greatest personal fears.
In the evenings, in the long hours when I couldn’t sleep, I began to search for answers. On the internet. I was familiar with the possibility that I had gone into a depressive episode. At one point I had also found information about attention deficit disorder, but as I was reading, I was only amused by my past attempts to justify my inattention in math with an imaginary dyscalculia**. I desperately wanted a label to prove that I wasn’t faking my struggles, anything but ADHD, which at the time seemed to me just an eligible excuse for someone who was lazy. I had never been hyperactive, nor could I call a lack of skill with arithmetic a real learning difficulty. I didn’t have the ‘severe features’ that I considered the basis of ADHD.
It took more than a year before I started treatment for what I didn’t want to recognize as major depression. Based on a series of assessments and questionnaires, as well as my mother’s notes and observations, I received confirmation many months later on a yellow prescription: I was starting treatment for Attention Deficit Hyperactive Disorder (or ADHD). The association with depression would not be a first.
In many girls, depression is triggered by undiagnosed ADHD because of a lack of hyperactive manifestations, more common in boys.
Even though I officially got the diagnosis, the fact that I can sit still in a chair (but still feel the urge to kick my leg) still raises the suspicions of the doctors and psychologists I see. I’ve been told that I don’t look or talk like someone with ADHD. In some people’s opinion, everyone has moments when they may seem to have ‘ADHD’.
I constantly fight the ‘battle’ of self-defense: in front of my mother, who denies the diagnosis, in front of my father (who doesn’t question the fact that he keeps forgetting doctor’s appointments or business meetings) and every 6 months for a re-evaluation of the diagnosis. It’s as if each consultation seeks to verify the veracity of my story, maybe-maybe I don’t mention some symptoms. Or possibly conclude that I am cured!
There are times when I think it was all a mistake. That, through lack of willpower, I have resorted to medication for something intangible and, at first sight, invisible from the outside. And medication, while it helps most of the time, there are times when it doesn’t. I end up wondering if it’s acceptable to ask for an alternative medication, or do I risk being labeled as someone who tries pills like candy?
In Romania, as in most European countries, getting a diagnosis of ADHD in adulthood is very difficult. After I turn 18 years old, I will no longer have the right to compensated treatment, which can in no way be considered accessible to everyone. Although those with ADHD abhor structure, they cannot live without it, and it is precisely where the need is greatest, in the medical system, that we are not given much choice.
This whole process, which is extremely long and expensive, makes me question whether it is worth the effort. Is it worth it to wait for dozens of weeks for appointments and paid investigations? Would it be better to turn to the private system, where a consultation costs what I would spend for a single month’s treatment – received only if I find a doctor who can validate my symptoms and, by implication, my suffering?
If psychiatry does not yet allow a diagnosis to be made on the basis of objective measurements (biological markers identifiable by laboratory tests or imaging), how long will the speculation that ADHD is a ‘made-up disease’, from which only pharmaceutical companies stand to gain, continue?
As I am an advocate of more integrated approaches, preferring to resort to drug treatment only as a last resort, I have often reflected on the problem. And each time I answer myself with another question: who would really be willing to deliberately make their daily life more difficult by deliberately claiming false symptoms?
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[*] Thomas R., Sanders S., Doust J., Beller E., Glasziou P. (2015). Prevalence of attention-deficit/hyperactivity disorder: a systematic review and meta-analysis. Pediatrics, 135(4), e994-e1001.
** dyscalculia = Specific Learning Disorder based on a neuro-biological dysfunction that affects the development of the brain’s ability to work with numbers
For more details on how ADHD manifests and is treated, see our factsheet.