"This is not the end of your story” my sister whispered to me.

It was the only thing I remember of the night I was wheeled out on a hospital trolley. My not-so-grand entrance into the acute mental health system as an inpatient.

If I had my way that night, it was to be exactly that: the end of my story. I wanted to retire from life. Hurt.

This feeling had plagued me for too long. A dark cloud had crept into my psyche and my deep sense of despair and hopelessness was so profound, my only option to end the pain was to take a last breath. What a relief it would be.

This was an expression of the most profound human suffering. A deep disconnection had taken centre stage.

As a health professional working in the mental health world, had I just crossed the chasm from ‘professional’ to ‘patient?’ A highly functioning contributing member of society, capitulating to an existence in survival mode.

Past psychology sessions had shone a light on a pattern of abuse that had systematically eroded my soul. The mind is kind, and for so long I held the painful flashbacks at bay. But like holding a floating device under water, those thoughts, those flashbacks, they look for different angles to resurface and inevitably, you will grow tired and let go.

I now understand this is from years of Post-Traumatic Stress Disorder (PTSD). I had surfed waves of psychological distress before, coming out the other side. My heart just a little more hardened. But this time was different. I was masking my now breaking heart.

The monotony of COVID lockdowns shone a light in those dark places resulting in my perfectionistic traits going into overdrive. I was over-working to over- compensate for the emptiness.

To the outside world, I was a hard-working senior leader in the mental health system. I had raised two beautiful women. I was always a contributing member of society, and this nonsensical perfectionist veil camouflaged the many rounds of deep despair I continued to circle.

I had to work so much harder to uphold my responsibilities, only to collapse when I got home. My biggest fear was being a burden, so unravelling behind doors felt safer and less overt, but it was exhausting.

As a health professional, I was fighting for the rights of those living with psychological distress whilst fighting my own private battle which was ever increasingly robbing me of who I was. I realised I was no longer bouncing back. The PTSD had a firm stranglehold and in response I slowly cocooned myself.

I had tried to get the help I needed, by taking myself to already over- run emergency departments in an attempt to keep myself safe but emergency departments are no place for people who are psychologically distressed.

I had developed a dangerous relationship with mind-numbing substances to mask the pain for the past 12 months, and surrendering this information to strangers with clipboards and pens was a painful assault on the protective walls I had built to keep this darkness contained, and now compromised, these walls began to crumble.

The silence amplifies the stigma and the aloneness.

I waited three months for an appointment with a health professional to be told “I’ll send you a Valium script and see you in 2 weeks”.

Dismissed, hushed. Paternalistic response. I had pinned so much on this appointment. So much hope. to be met with “Oh no, here you are again”. Another two weeks maintaining a finger breaking grip on that cliff with no plan out. The walls closed around my heart and my mind went into the darkest corner.

The night of my overdose, I was very unwell, but it did not end my story.

While in and out of consciousness, I was taken from the emergency department to a ward with 9 other women where I was to stay for the next 5 weeks. This was meant to be a ‘safe haven’ to help with my recovery - as I could not be trusted in the real world.

It is confronting, in those early days, to realise you are walking amongst the ‘living dead.’ As an inpatient, you are unexpectedly thrust into an intense clinical hospital environment, living closely with other tortured souls. Every woman living in my unit had a history of trauma. Their invisible wounds often interrelated with alcohol and drug problems; they were at rock bottom.

I did not care for their stories or why they were here. Somehow, I was still here. Not feeling, just surviving. Just.

It is easier to not care and surrender yourself to a feeling of helplessness instead of living without hope.

Many of the women had been here before. A revolving door of acute ‘un-wellness’. All the while, life continues on the outside. Children, job, finances, social connections, and commitments. The ensuing stigma and discrimination did not allow me to tell my story openly and honestly. But I could not allow myself to care.

I wanted to leave, but my family needed me to stay.

I was here for my “own good” as I could not be trusted to live in the “real world”, and I was no longer the captain of my soul.

I became institutionalised very quickly. Being told when to eat, where to go, when to take meds, when to see the doctor. Witness to my fellow inmates who at their worst, now devoid of all their coping mechanisms, were told “you cannot smoke for another 4 hours.”

The boredom……. The boredom. The lack of control over your environment and the boredom. Distressed minds become more distressed. It is not the psychological distress that drives frustration, anger, fear- but the paternalistic environment you find yourself in.

Even when our minds are distressed, we still know what we don’t want. We can still be supported to make decisions.

Unannounced room searches contributed to the feeling of being an inmate. I was met each night on the hour with a torch shining in my face… “Just making sure you haven’t topped yourself”.

I felt like a checklist each morning and in front of an audience of fellow inpatients, I was asked if I could hear voices, if I have suicidal thoughts before robotically having my blood pressure checked.

Fronting up to the nurse’s station, calling out for attention to charge my phone, asking to go for a walk, asking to wash my clothes – were all met with “no”. The rational to deny these simple human rights hidden under the guise of controlling rules for safety and “duty of care”. You can still provide us the dignity to make our own decisions by providing options and choices, even when we are ‘unwell’.

The risk is the environment not the person.

When you call us dehumanising terms such ‘non- compliant, complex, lacks insight, difficult; we see a window into your values, and this absolutely translates into how you engage with us.

So many times, reactions by inmates were justified as being part of the ‘un-wellness or their diagnosis’, when in fact they were perfectly reasonable reactions to an oppressive environment.

The threat was always there that if I stepped outside of what was expected of me, then ‘security might be called’. It is a confronting moment seeing a woman acutely distressed ‘tackled to the ground’ by three burly men to be placed in isolation - solitary confinement. When she most needed connection, not punishment and total disconnection from other human beings.

I cannot count how many times I have heard “It is not possible to eliminate seclusion and restraint because of occupational violence”. But the clock is ticking as within 10 years all forms of restraint will be unlawful.

Many inpatients do react - to an environment that holds all of the power.

It is a completely human response. We react to threatening environments, the fear of being locked up, forced treatments, the imposition of child-like rules, being ignored, judged and breaching our human rights.

When we support people to make their own decisions, their dignity is affirmed, and this can be deeply healing. No one appreciates having decisions made for them without their input and expecting unquestioned compliance.

Respectful, kind, compassionate care will help keep mental health professionals safe.

Duty of care means having systems in place to limit risks but not at the detriment of a person’s right to decision making. Rather than constantly looking to mitigate risk, looking for ways to support someone to do what they want and need to do safely will make all the difference.

Needless human rights breaches plagued my time as an inmate.

I was often a witness to basic human rights abuses. I watched people desperate for connection denied simple requests. This often escalated quickly to the point security became involved. The person is “locked up” for their own good. Too many times I witnessed these needless escalations of behaviour that caused so much harm.

All humans are wired to need connection, but that need deepens and widens when you are in psychological pain. But too often the mental health system confuses connection seekers with attention seekers. The answer being: more Valium, or worse, being ‘removed’ and secluded.

Never as an adult had I experienced such a loss of rights, freedoms as I did when I was a consumer of the mental health system. Decisions were made for me without me.

When the fog began to lift, I felt ready to work to regain capacity for self-determination and broader recovery strategies - but this was never on offer. Meds and beds.

I was in the inpatient unit for 560 waking hours with very limited contact with health professionals – about 2% of the time I was there. Clinicians are asked to undertake so much that removes them from the very thing that they are there for. So much non-consumer facing work, so many meetings. Do they all add value to the consumer experience – or take from it?

My experience as an inpatient; unwillingly institutionalised and unnervingly marginalised, was deeply traumatic, and I am still receiving counselling to undo some of the harm it has caused. Power is always felt by those who don’t have it and invisible to those who wield it.

I want to be treated like a human being with agency and dignity.

I want an experience where:

I am orientated to the ward at my own pace and be asked about my story, looking beyond my distress.

My story follows me, so I do not have to repeat my history - this is exhausting.

I am asked early what I want to achieve, and what and who is important to me.

I am included. Involve me as a partner in my care and collaborate with me to develop a plan.

See me as a person with strengths and capabilities. Our stories are important, but we are so much more than our stories.

I promise you, the risk to mental health worker safety is reduced when people feel respected, acknowledged, listened to and valued. Create environments that we do not want to run away from or fight against.

Understand all that is impacting on me and help me to dismantle these barriers so I can get on with the business of recovery.

Strong partnerships with community organisations exist so teams can be assembled around me to address what is important to me.

Recognise me and my significant others/supporters as the experts in my life and include us in team meetings and keep us informed along the journey. Ensure a social worker is part of the team, so I do not have to tackle Centrelink alone when I am unwell.

Build partnerships with organisations that tackle alcohol and drug issues and violence in all its forms.

Give me access to information in a format that I would like and can understand.

Allow me access to an advocate when I need it.

Link me in with a peer worker who gives me hope through positive self-disclosure (my peer worker was like a shining beacon of hope for me).

Give me a choice of activities that are meaningful and not infantilising - even when I don’t care - and keep asking me to participate, because one day I just might, as my illness releases its grip.

Transform the tired courtyard to an exercise space, create a beautiful garden that is healing and good for the soul, offer meditation, music therapy, pet therapy, mutual help groups, daily patient meetings, posters on walls reflecting hope and recovery- it all matters.

Thoughtfully plan my discharge with me. Do not cut me loose without supports in place.

Please, please do not ask, “why the addiction"? ask “why the pain"?

Hear our pain, listen. Don’t cause more.

A trauma informed system that offers hope not hurt

The biggest game changer for me was a referral made to CASA- Centre against Sexual Assault. They are truly trauma informed and have helped me to unpack the epicentre of my psychological distress. Most of the women in my pod, had all experienced some complex trauma.

Design a 24-hour drop-in alternative to emergency departments for people who are psychologically distressed. This works incredibly well in Adelaide at the Urgent mental health centre - but attach it to an inpatient unit where warm and seamless transitions can occur if needed.

All I needed was for the system to paint a glimmer of hope and recognise my uniqueness and humanity so that when I was ready, I too could see this. My family never gave up on me, even when I could not give of myself anymore, why couldn't the system?

Lived Experience is not a useful addition, it is the answer.

I now understand why a consumer movement of survivors have been rising up against a system that traumatised them further.

To counteract this trauma, organisations are employing lived experience workers at an unprecedented pace in response to the Royal Commission, but without the necessary organisational readiness work that is required for peer workers to thrive.

Paid peer workers experience unconscious bias and discrimination in the workplace and are treading water at best. Whilst the system loves the ‘idea’ of learning from lived experience, it does not know how to let go of deeply entrenched power so that lived experience can step into their own power.

I would love to see a time true partnership underpins mental health service development, and quality improvement activities include the consumer, carer and service provider perspective – working collaboratively together.

Failing to achieve this means no change, and this risk is unacceptable. The Royal Commission is demanding different. Consumers, carers and Lived Experience voices are demanding different.

Lived experience work is justice work and I want to see a world maybe in my granddaughter’s lifetime, where we no longer need a lived experience lens, because the mental health system is just.

My lived experience in the mental health system has deepened my resolve to advocate for change to the systems that silence, restrain, oppress, and shame humans who desperately need connection, compassion and understanding. I hold hope and belief that things can get better. I must believe this, as it is quite literally a matter of life and death for too many.

Oh, and my sister was absolutely spot on; this is not the end of my story.

Claire Conlon, National Advocacy, Policy and Research Manager

Email: cconlon@wellways.org