Misdiagnosis
Image credit: @garymcmillanart on Instagram
Author’s Note: “Misdiagnosis” follows a brief trajectory of my life, navigating it with undiagnosed ADHD and autism.
The other day I took a nap at work. Strange thing to admit to, being something so frowned upon, but I could not help myself. I had had enough. I was physically and mentally exhausted, and grumpy on top of it. Years and years of masking make me sometimes forget the characteristics of ADHD and Autism, how I manifest them, and how they trigger other conditions I suffer from, such as Fibromyalgia and Vasovagal syndrome. Masking also worsens my depression to boot. But therein lies the crux of it, I cannot unmask anymore. I could perhaps learn how to slowly be more my authentic self with specialized psychological and psychiatric support, both of which I cannot afford. This is the story of how I have lived my life with undiagnosed mental conditions that, some might say, are becoming increasingly more common. Lest we forget how they affect someone personally, this account is supposed to help clarify the difficulties of living with these conditions without the appropriate treatment.
I am a 42-year-old woman, and I got my ADHD/Autism diagnosis at 39. While “better late than never” still holds water, a lifetime of persistent misunderstandings and traumas could have been avoided had someone noticed in my childhood something about me that was different and had decided to investigate. While being different does not bother me in any way, I would still like to have been given the tools to navigate the world with these conditions. At 39 years old, all I got was the relief of having my reality finally explained to me. One of the maxims I have always used to describe how I view things, which is not unknown to many, is “life is like not having a script to live it, while everyone else was given one”. Well, they forgot about me, and the more I speak to people with such conditions, the more I encounter people who feel the same way.
I have not been well lately. Fibromyalgia has been flaring up like Christmas lights in my body, and simple tasks such as writing this text to make my ongoing disorders clearer have become daunting. Am I fit to work? Am I capable of having a normal life? When I was a child, I was the weird-ugly kid with good grades. I would thrive in subjects such as History and English, merely because I liked a good story and I liked learning languages. Now I know that to be my ADHD hyperfocus at play, helping me through school and getting in the way of most things in my life right now — I now tend to hyperfocus on social media and shopping websites. I did not do that badly in Maths and Portuguese, but books were my companions. To a child, and later a teen, who did not know how to make friends or make themselves be liked, which I now see clearly as my being on the autistic spectrum at play, one might have confused such hyperfocus with effort. Having a conversation with another person was frightening to me; I could not fathom where to begin with such social interactions. So, when I made my first close friend at the age of 14, due to our shared interests in music and blond, long-haired boys (a rarity in the Brazilian mid-west, where I come from), I latched onto her until she became sick of me. Unlike me, she is white and of German and Polish descent and had always displayed characteristics of racial prejudice in her speech. She would eventually become a NeoNazi sympathiser, and while the signs were all there, I overlooked her prejudiced ways just to keep a friend. These are the lengths a misunderstood kid will go to just to feel like they belong.
I vividly remember one experience around that time. My memory is usually a blur—side effect of having taken prescription medication all my life—but this one is crystal clear. I had made a plate of food for lunch, and my father mistakenly took it, thinking it was his, to which I started crying like a baby because my plate had been “made to perfection”. It may seem like an odd little story, but it showcases one of the lesser-known characteristics of ADHD, which is oversensitivity. Other lesser-known traits one will find in people with ADHD are the fear of beginning a task, like starting conversations, clearing up after their mess, or even beginning to write the text I am presently writing.
Adulthood came, and with it my first relationship, at the age of 22. My boyfriend at the time was a deeply troubled 19-year-old, diagnosed with schizophrenia, acute depression, and OCD. By that time, I was already being treated for depression—which was only noticed by doctors when I was diagnosed with hypothyroidism, since women with hypothyroidism often display signs of depression—but so much of my understanding, or rather misunderstandings of the world, were still left unanswered. Watching my then partner, his struggle, and how all of that affected me, made me seek out further diagnoses and get further treatment, because as far as I was concerned, I did not only have depression. It is worth noticing that I was suffering terribly with insomnia, which I still suffer from, and it is so common in people with ADHD. In less than ten years after the beginning of this ill-fated relationship and its eventual end, I would be making my first serious suicide attempt, which landed me in the ICU, and got me one month of psychiatric internment. Before this suicide attempt, I was what is described by many people suffering with ADHD as a thrill-seeker, the eternal search for dopamine hits. That made for very unhealthy life choices, a bad relationship with alcohol and medication, and the pursuit of increasingly more dangerous activities. It was at that time that I began to seriously harm myself with cuts and burn — most of which are now covered by tattoos. I was diagnosed, or should I say misdiagnosed, with bipolar disorder, and started on a series of different medications for it, such as Topiramate, Depakote, and finally moving onto lithium. That gave me a series of side effects, such as exaggerated weight gain, while not easing any of the symptoms I displayed. My anxiety was amped up and my insomnia increasingly worse, which turned me into a zolpidem dependent. Zolpidem, largely known as Ambien, is a medication taken to induce sleep, and should be used only temporarily, which I only found out after years of taking it.
This account is meant to emphasize how finally being diagnosed with ADHD and Autism, and receiving the right counselling and treatment, was a big relief. That which I had spent so long trying to understand — overblown need for attention, self-destructive behavior, seeing and making sense of things differently from other people — was finally explained. While that was elucidated to me, it remains a mystery to a lot of people with these conditions. I am married now to a man who desperately tries to comprehend my shortcomings and quirks, and I can see how much this struggle takes a toll on him. My family sadly has not adjusted their own behaviours to my now known reality, and many people utter the classic misconceptions heard by autistic people, You do not look like you have autism. Only the closest to me understand that ADHD is much more than attention deficit or spells of hyperactivity — it is indulging in addictive behavour, it is being childlike at times, out of paralysis to face the world, it is being extremely sad over small slights, it is insomnia and anxiety, it is also an overwhelming sense of emptinessdue to the perpetual lack of dopamine. Medication does help, but having access to free therapy would help me and others a lot more. I have seen numerous people with ADHD who cannot hold down a job, but I am hopeful that, with the amount of exposure and awareness it has had lately, that scenario will change.