The waiting game: the truth behind my ADHD diagnosis
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Imagine you live in a world where everybody you know runs.
They do it for fun, exercise and to socialise. You dream of running a marathon alongside them. One day, while training, you feel something catch your ankle and you trip. You get up and look around but there’s nothing there. You brush it off, but it happens again. And again. You tell someone about it, and they say, “it’s nothing, we all trip sometimes.” But this becomes a near-daily occurrence for you.
People laugh at you when you trip. You get told you’re clumsy or a bad runner. When you try telling your loved ones that you’re being tripped, you get told to stop making excuses. They start saying you just don’t want to hang out with them anymore. That you don’t care enough to come running, you don’t want it bad enough, you aren’t trying hard enough. You aren’t good enough. You hear it enough you believe them.
You try to make sense of it. Maybe it’s something you are doing wrong. You make sure your laces are tied properly and tucked in. You lift your feet higher than normal, so they don’t catch. Eventually, you stop running because falling so frequently hurts too much. You try to avoid even walking anywhere if you don’t have to.
Now imagine, years later, hearing a rumor that there’s an invisible monster on your running path. That there is also a doctor that sells glasses that help you see this monster so you can avoid tripping over it. That maybe, it wasn’t your fault after all.
This is how I felt when I first heard about ADHD.
The waiting game
It was less than a month between discovering ADHD affects grown women and booking an appointment with my GP. The psychologist I was initially referred to told me if was wanting meds (the glasses that help you jump the monster) I would need to find a psychiatrist (the doctors that can get you them) instead, as its best to do both the diagnosis and prescribing through the same person.
I found a telehealth clinic that could get me in in eight weeks’ time (beginning of March). What a dream! Waiting times in ACT were six–eight months. The GP switched my referral, but a hiccup meant they had to fax it through again. I called the clinic to ensure it made it.
‘We have been inundated with referrals and until its processed, we won’t be able to tell you if it’s been received until its processed. We are running about three weeks behind.’
Three weeks later, I called again, ‘Sorry, we are unable to confirm receipt of your referral until it’s in our system. Call again in a month.’
This wasn’t even about booking an appointment, just if they’d received my referral. But this was the only clinic that could see me before September, so a month later I call again. This time, I managed to discover they were currently processing mid-February. My referral was sent on 6 January. They had not received it.
I still had to wait my allotted eight weeks. Finally, my two appointments were booked for 19 and 20 April at a cost of $1200.
The diagnosis
The diagnosis itself is pretty nerve wracking. There’s the fear of not being able to ‘prove’ your experience, or not being ADHD enough to legitimise getting help. Some clinics require evidence symptoms occurred before you were 12, usually in the form of school reports or family members accounts. I’ve moved 11 times in 15 years (one of which was international) so my primary school reports could be anywhere on the east coast or New Zealand. As for family accounts, my parents’ initial response to my questioning was “Oh no, you don’t have that!”.
My diagnosis was done over two appointments, the first being asked question after question, no conversational back and forth, or reaction to the answers, with long pauses in between. Like an automated messaging system moving on to the next prompt when a silence was long enough.
The second was an extraordinary hell. My husband was asked a series of questions about what living with me is like. ADHDers tend to also have something called rejection sensitivity dysphoria. This means that not only are we extra sensitive to rejection, but we are also sensitive to perceived rejection, or rejection that hasn’t even happened yet. This is probably caused by 20,000 extra negative comments we receive about ourselves by the age of 12. So, having to listen to a good 20 minutes of my husband describing exactly how difficult it is to live life with me—brutal.
Finally, it was confirmed. Yes, I do have ADHD. I have never felt more validated! It felt like finally someone was acknowledging that, yes, something was actively tripping me at random and making my life extraordinarily difficult. For once, there was an answer outside of myself; it wasn’t a moral failing, I wasn’t just lazy, it wasn’t me ‘choosing’ to not live up to my potential. There really was something holding me back. I wanted to scream, “I’M NOT CRAZY!”
The hope flooded in. Maybe the meds will work for me. Maybe I’ll be able to think a task needs doing and actually be able to do it. Maybe my brain will let me focus on a task long enough to complete it without feeling pulled off the road.
“Two weeks or so”, I was promised. Two weeks to get in with a secondary doctor to start discussing ADHD management.
The waiting game (again)
Sadly, this isn’t the end of the article. If it was this would be a happy ending. Two weeks pass… three… and I haven’t heard anything from the clinic. I call just in case I misheard. Maybe I was supposed to call them.
I was told, that being based in the ACT, and the clinic is not, they needed special dispensation to prescribe across borders. This will take six to eight weeks. Disappointing, but I was finishing my final semester for my degree and could wait six weeks.
I call back. “We don’t have someone who can prescribe the meds to the ACT. It may pay to get on some other lists”. Lists that were eight months long when I first started this process in December. I stay on the books but start looking elsewhere. Very few clinics had their books open and the ones that did still had the interstate issue and didn’t have appointments till December.
On the first of August, I call my clinic to see the progress, and this is when I learn that when they said they didn’t have anyone to prescribe me meds; it wasn’t just because of the interstate complication as they originally explained but, rather, they didn’t have anyone on books that could prescribe full stop.
It takes me three weeks to regain motivation to get my third referral and complete the six forms they require. Finally, I have only one last part of the process to complete—payment. Upon realising that this clinic hadn’t sent through an invoice but rather a word doc with an account number in it, my husband looked at the reviews and my confidence was shot. One and a half stars.
I start the process again.
The first Friday in September I had a good dopamine day. Fifteen clinics I called. My husband called seven. Out of 22 clinics, only three had their books open (one clinic’s books had been closed for three years!). One clinic could book me in in two weeks’ time and I would walk out with a prescription! But each psychiatrist is responsible for treatment and so they would need to make their own diagnosis.
So, my options are:
- Keep waiting in a queue that I have been in four months, have only moved from seventh to fifth in line and still don’t have anyone who can medically help me
Or
- Pay another $1400 to start again with a new diagnosis but get the help I need before the end of the month.
Losing hope
It’s the indefinite nature of the process that I struggle with—the not knowing if a single email will snowball and drain all my limited motivational resources. In truth, I find it easier to sit down and do a 1500 word assignment for university than to deal with any of this. At least with an assignment, there are clear parameters and a definite end to the task. I know it will end. Every email or phone call opens a bunch more tasks like following up, searching for paperwork, and filling out forms (so many forms!). Any of these can also host even more undefined tasks. All while actively trying to not forget what you were doing, because if you put the task down, you might not notice it again for the rest of the day. Or worse, fortnight.
At every step in this process, I am actively fighting against a brain that pulls off course at even the slightest hint of something more engaging and exciting than…paperwork. With ADHD it’s never just an email. The process to get help is so burdensome and full of tripping points. Not to mention, half of ADHDers don’t make it through high school and a third are likely to be unemployed due to their condition. This means those most in need of help will be both less likely to afford it and less capable of getting it.
Before I was diagnosed, I had hope. Even knowing something was wrong with me, I had hope that maybe this productivity hack will be the one, maybe this organisational system will finally help keep my house clean, maybe this self-help book will be the one to stop basic adulting from tripping me up. When I was diagnosed, I felt that ‘finally! Someone else sees why I have been falling over my entire life’—it wasn’t just me.
But eight months since seeking diagnosis, and fourth months since it was confirmed, and I’m still looking to get a pair of those glasses so I can stop falling on my face.
The system to get help is broken. It nearly broke me.
It’s not over yet. It still might.
