The Drugs Don't Work

I'm a little more reticent when talking about mental health than I used to be. When I started discussing it publicly a decade ago, there were still many misconceptions and stigmas surrounding diagnoses. These days, openness is encouraged, and there are booming wellbeing industries and thriving charities and corners of the arts sector dedicated to encouraging conversation. These cultural developments have undoubtedly had some positive impacts. However, although open dialogue has reduced stigma, the push towards the notion that conversation is a cure-all has ultimately been quite damaging to those of us with chronic diagnoses.

I used to feel like my story was somehow helping, but with all this conversation and back-slapping happening, I often feel that adding my perspective to the mix is little more than ideological onanism. I remember a time when people used to be interested in the actual art I made; no one gave a toss about my medical history. These days, I'm so frequently upstaged by my psychiatric records that I'm not even sure what I do for a living anymore. I never wanted to be the poster boy for mental illness. Oddly, professional loon was tabled as an option at my school careers interview.

I was only ever compelled to talk about my mental health because I had experienced injustices, and I wanted to improve the system that supported them. I didn't understand at the time that being solely identified by my infirmities would be a deep and thankless rabbit hole, one that I'll no doubt spend the rest of my creative career trying to crawl out of. So, if you've been wondering why I've been keeping my mouth shut lately, now you know.

It's hard, though. Somewhere along the line, the conversation seems to have been derailed. All these solo shows and moodily shot interviews where some footballer chats to a Royal about how mindfulness rescued them from the jaws of depression are just window dressing. They give us the impression that we've got a handle on the nation's mental well-being when, in reality, psychiatric services are every bit the exploding clown car they've always been. In fact, cuts mean we're in a worse state now than ever, not great news amid the biggest mental health crisis in living history.

I turned forty-six yesterday. I first interacted with mental health services when I was eleven. I started taking medication at sixteen. I don't know exactly how many medications I've been given over the years, but my guess would be at least forty. It's mostly been a combination of three separate medications to be taken daily in combinations of four to seven pills: an antipsychotic, a mood stabilizer, and some form of barbiturate or strong sedative. The medical consensus is that taking these medications can shave around fifteen years off a person's life expectancy. Even though I've had several stints of inpatient psychiatric care and a smorgasbord of perfunctory and often pointless interactions as an outpatient, I don't believe I've ever been properly treated for my issues. The reasons for that are complex, and the blame doesn't fall solely at the feet of services, but the damage inflicted, the lack of judgment, care, and expertise demonstrated, would, I'm sure, be considered nothing short of negligent in any other branch of medicine.

I have a diagnosis of bipolar disorder and post-traumatic stress disorder. Nobody likes an armchair doctor, but I've done extensive research and find my bipolar diagnosis pretty questionable. There's no doubt I have PTSD, but my own research points less towards bipolar and far more strongly towards an Autistic Spectrum diagnosis. I've taken several respected tests and scored within autistic parameters on all of them. On the many checklists of around thirty to forty symptoms I've studied, I always have all but a couple. Almost all of my masking behaviours are congruent with autism, yet not a single medical professional has ever hinted at the possibility that this could be something worth investigating. On the many occasions I've tried to bring this up with mental health professionals, I've been told that I can't be tested for autism because it's an entirely different branch of services, and it would just complicate things. If it weren't for my stubbornness, my suspicions would have been entirely dismissed. After months of persistence, I was told I'd be tested sometime within the next three years. When I questioned my GP several months later, I was told they'd lost my referral, so I had to start the process again from scratch.

So why am I telling you this? Why does any of it matter? Well, partly because we need to get the conversation about mental health back on track. We need to point it towards useful outcomes. We need to focus on issues like the availability of beds and treatment, funding and its distribution, improving assessment and diagnostic processes, and community care approaches. Talking to a mate down the pub is all well and good, but it won't cure schizoaffective disorder. Most people don’t have the skills to deal with complex mental health issues, and being habitually floodlit by someone who isn’t well would put an immense amount of strain on an untrained individual.  

Let's face it, services are in a tough spot. They have been for a long time. I was given strong, addictive drugs for over twenty-five years. Dangerous, toxic drugs with horrendous physical side effects. Drugs that compromise your consciousness and can hold you in a prison of physical lethargy and emotional stasis. The truly galling revelation in all of this is that research is now showing the veracity in something that I've been penalized and berated for even hinting at in the past, which is that many of these drugs don't actually work (see the link below). So, three years ago, after over two and a half decades of being medicated, I made the decision to stop taking my meds. I know lots of people who are insistent that medication works for them, and I believe them. I want to be absolutely clear: I'm not anti-meds for everyone. I would never advise anyone to come off their meds or tell anyone how they should be handling their care. I can only speak to my situation. For me, they were the wrong call, which, again, could be taken as evidence that a misdiagnosis had occurred.

I'd long suspected that my medication was doing me more harm than good. With the exception of the sedatives (highly addictive and problematic opiates), my medication seemed to have zero positive impact on me. Over the decades, my protestations about this were always met with the same cynical response. They would incrementally augment my dose until it couldn't be increased further. At which point, they'd switch me to a newer, shinier drug and repeat the process ad infinitum. Since abandoning my medication, my symptoms have been no worse, and, in some cases, markedly better. I feel it's important to add that I've replaced my medication with a person-centred self-care routine, including exercise and rigorously controlled lifestyle changes. It was unequivocally the right decision for me.

What has been infuriating is that I still have severe and disabling issues. The medical profession's response has pretty much been to say that if I won't take medication, I can't have access to other essential support. This, to me, demonstrates the unhealthy interdependence between mental health services and pharmaceuticals. I'm not some bean-weaving anti-vaxxer type. Medication is important, but it's too easy to prescribe or miss-prescribe. It's too easy to fob people off with a prescription without properly investigating what's happening with them. Mental health has been a zeitgeist topic for years, but the changes have mostly been cosmetic. If my experience is representative, and I have friends who tell me it is, then the system is not fit for purpose. The changes we need to make are systemic, and the primary reason we're being told it's good to talk is that talk is cheap. [Link to research: https://pubmed.ncbi.nlm.nih.gov/33550993/