Do you ever wake up and feel pinned to the bed by an invisible enemy? Do you ever stand in an ordinary room and feel vulnerable, in danger? Do you ever read the news and feel the long fingers of past violence on your throat? Actually feel them, and wait for your throat to close?

Mental illness is complex. And so, the medical model of mental illness is complex too. Once in a while, it becomes news. Critics start to opine: too many people are getting sucked in. Too many people are taking pills they don’t need. Too many people are going to their doctors when they’re sad or nervous or unable to complete everyday tasks. Clinical terms have entered the vernacular to describe non-clinical behaviour: “psychotic” is just feeling passionate about something; “OCD” means wanting to have a clean house. It has become impossible, critics suggest, to know who’s actually unwell and who’s just tired.

It’s a misnomer. There is not a groundswell of secretly healthy people gorging on mental healthcare plans. According to the Australian government’s own statistics, 54% of people with mental illnesses don’t access treatment. The proportion of people with mental illnesses accessing treatment is only half that of people with physical disorders.

Over-medicalisation assumes a level of access to medical care that doesn’t exist. What we really have is mis-medicalisation – the result of decades spent looking for help in a terrible system.

The Victorian government’s royal commission into mental health started this week. Janet Meagher AM, who was diagnosed with schizophrenia in the 1970s, told the hearing that Victorians were “just surviving”. She claimed the health system stigmatised and discriminated against people with mental illness. “We need health professionals who encourage and support and enable,” Meagher said to the commission, “not just people who make us conform to medication regimes”. With money and research, more patients could be treated with a view to exit or otherwise reduce dependency on the model, or supported by better community care. Therapeutic approaches actually teach what critics suggest as alternatives: learning to rationalise; understanding needs; knowing how to ask for help.

At each step, someone is waiting to piff you across to someone else. There is no holistic service

What do you suppose critics imagine mental healthcare to be like? That you get a cool birthday-girl badge with DEPRESSED written on it? That potential lovers will find you mysterious and alluring? That employers will rush to offer flexible working conditions and more comfortable chairs? None of this is true. For all the steps we’ve taken to talk openly and reduce stigma, mental illness is still a bloody awful time.

At each step, someone is waiting to piff you across to someone else. There is no holistic service. First, you will spend significant time doubting yourself. You’ll listen to people tell you it’s all in your head, to just think positive, to go for a walk. Eventually, you might feel too awful to manage on your own, and a billboard will tell you to call a number. The person on the other end of the phone will tell you to see your doctor. Your doctor will have you fill out a survey. The survey will tell you to see a psych (-ologist or -iatrist). If one exists, you’ll wait four or eight or 12 weeks to be seen and it will cost you between $150 and $600. Some sessions will be subsidised by the government, but only under specific conditions. You’ll have to go back to your doctor to check that you’re still mental. Your psychologist can’t prescribe medication. Your psychiatrist isn’t trained in certain therapies. You will become a pivot in a whirling mess of professionals.

In the meantime, you are left to manage your own brain. Friends and family will keep offering helpful tips. You’ll go online to find other people like you. The fabric of time might split in front of your eyes while you wait for a psychiatrist to have a cancellation. You will be expected to rationalise these symptoms yourself and not die.

There’s an argument to be made that mental health is over-pathologised. In the past, a mental illness was one that existed over a prolonged period of time and could be clinically diagnosed. In the 80s and 90s, that changed to include acute illnesses, and to prioritise the patient. That necessarily means more people are being diagnosed and entering this overburdened network. There are more labels than ever, and more people identifying with or accepting these labels.

But this is a failing of the system, not of the people who need it. Just as we no longer treat migraines with leeches, mental healthcare has evolved, and must keep evolving.

On one hand, research cites an over-zealous interest from “big pharma”, where profits depend on extending the boundaries of what constitutes illness. On the other, mental illness has often struggled against the tide of misunderstanding. Treatments can be anything from talky-therapy like CBT to a medication regime to electro-shock therapy. The spectrum of illness is so diverse that the disorders sometimes bear little similarity to one another. A low-level depressive episode is a mental illness; so, too, are delusions so severe they are dangerous. Depression feels like carrying a stone in your belly, but so does bowel disease; a racing heart and sweaty palms can be anxiety, but they can be menopause, too. More disorders are being identified – or created, if you’re especially cynical – based on symptoms that overlap and are hard to articulate. Indeed, an ongoing issue in the treatment of mental ill-health is the reliance of patients to be able to describe what’s happening while also experiencing it. One person’s I can’t get out of bed is another person’s When I get out of bed I feel nothing except the vast chasm where my heart used to be. Mental illness symptoms are frequently subjective, difficult to nail down and almost impossible to prove.

Compounding it is that the symptoms themselves are an obstacle to treatment. Depression already tells sufferers they don’t deserve help, or that everything is hopeless. To some degree, a person seeking medical treatment is necessarily in need of it, if only because of the process they must have gone through to get to that point. This is why the billboards exist. Seek help. Speak out. Talk to us. How easy can it be to say I NEED HELP when society still tells you that’s a weakness?

Mental illness is not fun, it does not improve a life, it does not come with secret benefits. It is monstrously awful and frequently incurable. People – even nurses, even pharmacists, even doctors – will doubt you. They will say you seem fine, that you don’t look depressed. You will believe them. You will think, I did smile the other day when I saw a puppy dancing. I can’t be depressed. I must be a fraud. I am taking up too much space. I am wasting people’s time.

The system – not over-medicalised but under-nuanced – relies on self-advocacy. We are just not attuned enough to notice strangers with mental illness in the same way we might notice a knife sticking out of them. The need for immediate care requires someone who’s feeling god-awful to find the energy and courage to ask someone to make it better.

Sometimes, the idea that it can get better keeps us alive. There is a hopefulness in a medical model. It says, I know you feel rotten right now, but there are treatments you can try. It says, it can be better than this one day. And it promises, I take your pain seriously.

In Australia, it doesn’t, yet. In 2018, the Australian Medical Association’s president at the time, Michael Gannon, called mental health and psychiatric care “grossly underfunded”, and funding continues to be stripped. We’re still pinning our hopes on a process that’s designed for people with low-level needs, living in urban areas with disposable income. Recovery and management need a nuanced system with funding to create the right channels. Not less medicalised but better medicalised. Not a deterrent for people at their most vulnerable but a stepping stone to finding the best care.

And the system needs to stop biting its own arse and recognise people seeking treatment for what they are: legends who’ve overcome the first hurdle – themselves.

• Anna Spargo-Ryan is the Melbourne based author of The Gulf and The Paper House, and winner of the 2016 Horne prize