I have already told some of my ADHD story in the first post of this blog titled Here We Go…, but for the sake of completeness, I’ll be retelling it a little in this part of my story. If you’ve already read the previous post, some of this will be familiar and you’re not going crazy! Haha.
As a chronically ill person who had gotten that way from a virus, it’s probably not surprising that the COVID pandemic was (and still is!) a particularly scary situation for me. My health anxiety went into absolute overdrive and I found it so difficult to cope with the complete lack of concern ~normies~ had about the virus and doing their part to stop the spread.
I held it together as well as I could, but after the second year in a row of people flagrantly ignoring the fireworks ban designed to relieve the pressure on the healthcare system, I couldn’t hold it together anymore. My mental health was in complete shambles and it was simply impossible for me to just accept that my neighbours didn’t care enough to make sure I didn’t die or become more disabled.
They weren’t going to start to give a shit, even under the threat of the law, so I knew I needed to learn how to accept it. I considered the possibility of moving back to New Zealand, where they were doing a lot better re: the pandemic at the time, but pre-pandemic Netherlands was the perfect place for me so I happily put down roots that were planted way too deep to just yank them out without serious damage.
I reached out to a professional to help me figure everything out, and during those sessions, she picked up on something that I had already ruled out as a possibility because no one else, including teachers and other psychologists, had ever picked up on it. She said that, with my level of self-awareness and how much I already knew of the tools she was giving me, something else had to be going on.
Something like ADHD.
Because of the way the system works in the Netherlands, she was not able to diagnose me herself, so I had to get a referral to a diagnostic team before I could find out for sure if the years of mental health issues I’d dealt with were a literal neurological difference. Three days before my 35th birthday, I officially started my ADHD diagnosis journey.
Of course, that journey started with a 6-month wait for my appointment, which is actually not too bad considering the 1+ year wait some people have, but it was still a long time to be in that limbo of knowing there’s likely something TREATABLE wrong with me before finding out for sure. All of the research I did made it very clear that I had ADHD, but I couldn’t say for sure until I was diagnosed.
Diagnosis day finally came at the start of November. I got there early like I always do (because I hyperfixate on appointments), so I had a bit of wait before my nurse took me in for the pre-interview. This interview was to get to know me and why I was there, and I honestly think the nurse was ready to diagnose me then and there with how much I awkwardly went on about my life. But that’s not his job. So I had to wait again…
The next interview was with a psychologist to see if I met the DIVA (Diagnostic Interview for ADHD in adults) criteria for a diagnosis (and what type of ADHD I had). Much like the pre-interview, I rambled on about things that probably didn’t matter so much for the diagnosis, but I think it probably demonstrated what a whole ass mess my brain was. We even had to switch to a standing desk to finish the interview because I had so much nervous energy that sitting was getting painful!!!
Next up was the QbTest, which is a computerised test to check attention, impulsivity and movement. You have to press a button every time two shapes and colours match and the results would show how often you missed double shapes, if you pressed the button before the next image showed and how much you moved around. These were my results:
I then met with the diagnosing psychiatrist. She gave me a diagnosis of combined ADHD (both inattentive and hyperactive), but I scored significantly higher on hyperactivity. This is unusual for women, and she was surprised I’d not been diagnosed earlier, but she also said my level of intelligence and interest in school covered up the fact that I very clearly had ADHD all along. The stereotype of ADHD = dumb and unable to do well at school was the problem.
Normally, after a diagnosis is made, a test dosage of medication is given, but because I have epilepsy, I had to wait to get clearance from my neurologist. So even though I had my diagnosis and knew there was actually something to be done about it, I still had to wait another three months before treatment could start. This meant another NYE without help to get me through, but just knowing I had ADHD was really helpful. I spent the entire night with my noise-cancelling headphones on, playing Disney Dreamlight Valley instead of socialising. It was lovely (and what I did again for last NYE!).
I was a little pissed that they didn’t tell me I’d need to see my neurologist in the six months before my appointment, so I didn’t have to wait even longer to get help, and even more pissed that when I finally saw my neurologist, she said it wasn’t necessary to see her because methylphenidate is not contraindicated for people with epilepsy. But it’s not a true medical experience for me if there isn’t some kind of bullshit to make it harder than it needed to be! 😂
I went back for my medication trial and second qbTest. I was given 15mg of methylphenidate and sent back to the waiting room to let it start to work. I didn’t feel the sense of mental calm that I hear a lot of people experience on their first dose, but I did notice my body was relaxing in a way I don’t think I’d felt since before I first fell ill and I no longer felt the urge to move around to get comfortable/lessen the pain I was in. It felt SO good.
The second QbTest went by really quickly, and despite being more fatigued on that day than I was on my first test day, the difference in my results was truly astounding. I barely moved, made fewer mistakes and even kind of enjoyed myself. My window of tolerance for tedious tasks was expanded by the medication, and it felt amazing! These were my results on the second test:
I also started a CBT programme specifically designed for people with ADHD.
Since diagnosis and treatment, I have to admit that things haven’t gone exactly as I’d hoped because my physical health is still in the gutter (possibly due to the COVID I caught literally DAYS after starting my treatment). But my mental health has improved so much. My emotional outbursts are few and far between now, as I am able to catch myself before feelings turn into behaviours. I have also become far more productive and able to just get up and do things, even with my physical issues.
My next post will be the last in my story (for now, anyway). I’ll be writing about how I hope my future will pan out now that I have an answer to a literal lifelong question (what the hell’s wrong with me?!). Stay tuned for that!
PLEASE NOTE: I am not a medical professional. Any information or advice provided in this entry is for general purposes. Please read the disclaimer for more information, if you haven't already done so.