Drug use, disability, neurodivergence and healthcare | Helio’s Story
Trigger warning: medical trauma and brief mention of rape
By Helio (they/them)
As 2023 kicks into gear, I find myself reflecting a lot on my experiences of disability, healthcare and drug use.
Source: NightCafe
I’m proudly neurodivergent – an autistic ADHDer, I’m Mad (as in Mad Hatter – nuts), and I’m chronically ill. Before Covid, the language I had to describe my lived experience, and to connect with others like me, was actually quite limited. I didn’t know I was autistic until 2020 – the same year I went through some of the worst chronic pain in my entire life (and I’ve weathered opioid withdrawal). But the past 3 years have been a massive learning journey for me. I found the neurodiversity movement and learnt an entirely new language to describe myself and connect with others. I found a whole community of other chronically ill folks. I started to identify as disabled and engage in disability advocacy. And eventually I found the Mad Pride movement – a space to share my madness with other psychiatric survivors, without the label ‘mental illness’. Like I said, a massive 3 years!
Firstly, here’s a quick refresher on the word ‘neurodiversity’:
Neurodiversity is the natural diversity in human nervous systems (aka our ‘body minds’) – every single human falls under this label. Our ‘body mind’ is how we process information from our senses, from each other and internally. Neurodivergence, on the other hand, describes ways of information processing and functioning that differ from what we think of as typical – such as autism/ADHD, madness, or intellectual disability. Under the umbrella of neurodiversity, there are no ‘normal’ vs ‘abnormal’ people, just degrees of difference and similarity.
I don’t know a single neurodivergent or chronically ill person who doesn’t use drugs. (They’re probably out there, I just don’t know them). We use drugs to focus, relieve pain, manage our sensitivities, meet social expectations, job demands etc – and of course pleasure and play. Some people get their drugs from doctors and others from dealers or friends, but either way, all drugs serve some kind of purpose.
I’ve been using drugs most of my life, and it’s just the context around my drug use that has changed over time. In my early 20’s I was an injecting user in an all-encompassing opioid love affair. Shooting oxy was the first time I’d experienced all my mental and physical pain totally evaporate. And for a couple of years that feeling became the most important thing in the world. But toward the end, my life rapidly fell apart (to say the least), and after a series of traumatic events I eventually stopped my dependent use. I remember the first time I had my period after going through withdrawal. The pain smashed into me like a truck at full speed. I couldn’t stand or walk or even hold a conversation, as I grit my teeth and rode out waves of twisting electricity and cramps that felt like seizures. My periods had always been that painful, I’d just forgotten. It took another 3 years to get diagnosed with endometriosis, an extremely painful disease with no cure that affects 1 in 10 people with uteruses. Finally, some of my pain was ‘real enough’ to seem valid – and I had the scars from my first surgery to prove it.
I smoked meth for a few years too when I was younger. Sometimes in the middle of a chemsex bender, I’d find myself so struck by the clarity of my mind that I wished I could teleport home and organise my entire life. I tried to explain it once to my partner, but he didn’t get it. I said, “When I’m high, my mind looks like a computer screen. I can navigate wherever I want, everything is labelled in folders, and I can open up multiple windows without losing what I was just doing.” He looked at me and said, “Isn’t it always like that?”
I first sought out an ADHD diagnosis when I was 23, and the psychiatrist told me, “No, actually you just have the learning capacity of a 16-year-old due to your drug addiction.” Yikes. It took me a couple of years to wrestle with that message – to make sure I rejected it on a deep level – before I tried again with another doctor. And boom, I was right: my ADHD scored off the charts. No wonder amphetamines help my brain feel regulated. But in order to get prescribed stimulants, I had to go deeper into the system. I surrendered to its language and stigma; I learned which parts of myself to show and to hide. I had to appear more naïve than I was, yet self-empowered just enough, in order to be ‘trusted’ – all while navigating my actual challenges with drug use in silence. Sadly, this level of strategy and self-monitoring has proven to be the gold standard of how to access healthcare – and that’s only if you can afford it in the first place!
During the first 2020 lockdown, my body rapidly deteriorated into a spasming, inflamed blob of nerve pain and insomnia. I was using a lot of drugs every day to cope, which no doubt also made things harder, but I was completely ignored in my pleas for healthcare. My family did not understand what I was going through and weren’t able to validate or support me at all. I felt completely alone in the world apart from my partner, who sat with me while I cried in the dark at 3am unable to sleep through the pain, wearing the brunt of my distress and agony for months on end in the room we shared through lockdown. If there’s one thing that shows how extremely gaslit chronically ill people are by their doctors, it’s the fact that I convinced myself it wasn’t bad enough each time my partner said, “Please let me drive you to hospital.”
It's now 3 years on since that first lockdown and since moving to Naarm/Melbourne, I’ve finally had my nerve pain diagnosed. I found out I have two fully-formed additional top ribs (wait, what??). Due to the extra pressure, and an undiagnosed injury, my nerves and arteries in my shoulder have been clamped down – so much so, that my main artery has blown out like a balloon (owchh). As I write this, I’m waiting for the call any day now to head into semi-urgent surgery. Hopefully they let me keep the rib. I’m feeling a lot better about it all now, but the grief and rage in my blood starts to boil when I think about the preventable factors that got me here.
I came to Naarm in 2021, and when I found my new GP, I made the conscious decision to not bring my health history with me. See, for almost a decade I’ve had “recreational drug use and addiction” on my record, acting as a kind of glass ceiling over my every interaction with the healthcare system. I’ve constantly copped stigma and discrimination and had important treatments for my illnesses cut short, once doctors read that I’d accessed rehab services in my early 20s. As if being sick and in pain is what you deserve if you’ve used drugs – or as if my chronic illnesses are actually just a ruse to score some codeine.
In Sydney I saw a pain specialist who had my MRI scans showing swelling in my spine, and he literally said, “well I won’t prescribe you opiates because opiates are the drug of addiction”. No follow up, no referral, not even a letter to my GP. Mate, I never even mentioned opiates (I know better) – did I really have to educate him on how inflammation, nerves and neuropathic pain might work? Is that stigmatising joke of a consult really the best I should expect for $300 and the months waiting on a his ‘expertise’? Shame.
There’s a million and one reasons why someone who might need certain drugs can’t access them through a doctor – or may not even want to. (I certainly have a bit of an A.C.A.B. mentality when it comes to doctors). Poverty – aka capitalism – is the single biggest global factor for poor health. Australian health services are also often incredibly racist and culturally unsafe places, so Indigenous folks suffer worse physical and mental healthcare, despite being more likely to have multiple illnesses at once. Trans and gender diverse people experience high rates of abuse and assault while seeking healthcare – 63% of us according to a 2021 study. Disabled peoples (especially folks with intellectual disability) are at extremely high risk of abuse, assault and sexual violence while receiving healthcare. So, if you’re ALSO seen as a drug user, you’ll probably cop some trauma.
It's taken me 15 years of hustling in the system to get to where I am now, and even though I’m trans and autistic and labelled mentally ill, I’m also white and educated and verbally articulate. I’ve been raped in hospital, I’ve been denied pain relief after surgery, I’ve been kicked out of a bed when I couldn’t walk, I’ve been told my experience is not real over and over like a skipping record – and I’m considered lucky. What does that say about others in my community with less privilege? Maybe you’re one of them… well, friend, I’m truly sorry for all the times you’ve been mistreated when you needed care.
You could say that I’ve now fully graduated into the doctor’s good books: no longer a 'drug user', just a patient. It's ironic that my healthcare professionals now prescribe me the same classes of drugs for my conditions that I was previously using to self-medicate. I take opioids prescribed by my pain specialist, amphetamines prescribed by my psych, even my weed comes off a script now – produced by a company with poor harm reduction advice but good marketing. It can be hard to find the right strain and dose of cannabis if you don't already have experience. I eventually found a cannabis flower with a good balance of CBD and THC for my anxiety, but I had some intense experiences with the first high-THC flower they put me on. The TGA also needs to improve its curing standards, but overall medical weed does hit the spot.
My life has significantly improved since I started to find community, and I’ve been nourished by the wisdom and activism of badass disabled elders who’ve been fighting for and creating waves of change long before my time. But finding more of my people has also highlighted how separate some of our movements can be. Lateral violence exists everywhere. I’ve often seen the neurodivergent community lacking in anti-racism, or disability advocates leaving out Mad folks, or chronically ill activists who don’t talk about ending the War on Drugs. All our struggles are linked, and no matter who we’re talking about, community progress is only as good as its care for our most marginalised. We need to dismantle this colonial system that criminalises, stigmatises and profits off our difference and suffering. Let’s build the cultures of care we desperately need in our futures – it’s time that our movements and communities join together.