In her presentation to the Looking Forward Looking Back conference Mahlie reflects on her experiences within the public mental health service and where there may have been opportunities for the system to react differently. It is a powerful story that helps us to understand the complexities of mental health and where the system needs to be improved.
I guess the first public health system intervention should have been with my mother. She was 17 when I was born premature because she refused all prenatal care. When I was taken to the neonatal ICU, she didn’t come to see me for the entire month I was there. Yet, I was still sent home with her. We moved house constantly, mainly due to my father’s nomadic lifestyle. He wasn’t around a lot and spent a lot of his life in and out of prison. My mother ignored me for long periods of time, rarely spoke my name and often hid me from people she knew. I am her greatest shame. She told me constantly that I was unwanted and worthless. This litany of hate formed my brain’s blueprint. It structured the way I see myself. Its power over me is why I self-harm. It’s why I am more often than not suicidal; it’s why I have destructive and abusive relationships. We accept the love we think we deserve, they say.
My mother would slap me across the face repeatedly so I would cry and she would win. I learnt to shove my emotion down and seal it up. Control and power was everything to my mother. I think lots of people with many mental health issues also have trauma rooted in power and control plays. There are so many correlations of this power and control mechanism within the public mental health system. One of its biggest downfalls is that it often imitates the trauma dynamic. It disempowers and restricts the consumer. It leaves them vulnerable and scared and does not provide stability or reassurance. You never know what’s going to happen from one day to the next. Am I discharged today? Am I being moved to long term? Will they let me out on leave? Can I have my phone for 10 minutes? It’s a game. Many the people I have met over the years in psych wards have echoed this ‘game’ analogy. I know what to do to get admitted, to get leave, to get discharged. For me, the worst thing is knowing that it’s not about best practice or care. It’s a game of budgets and beds for them. Over the course of the last 4 years I watched the emergency psychiatric ward go from over 8 beds to only 4. It’s like a really exclusive restaurant you can never make a reservation for.
At age 11 I jumped out of tree and broke my collarbone. I told the doctor I wanted to die. My grandfather was told to “watch me closer”. No intervention.
At 13, when my mother finally left, I started cutting. I bounced from foster home to foster home, running away, using drugs and alcohol and within a year I was addicted to stimulants. I had almost constant suicidal ideation and was experiencing symptoms now described as ‘mania’ and ‘psychosis”.
At 15 I ran away with a man who promised to take care of me forever. He told me he was 19. He was 35, older than my mother. For a year, he locked me in a house and controlled me. I don’t need to verbalise what happened in that year, but it changed who I was forever. It ended violently. He went to prison for 15 years, but only because the authorities had the power to take the evidence from me, I refused to cooperate. They sent me to therapy once, I was aggressive and non-responsive so they gave up and let it go. I spent the next 10 years denying it had ever happened.
My first long term visit to the mental health system was at 16 and lasted 6 months. It was involuntary. I fought them constantly and was violent, aggressive, defiant and treatment resistant so I spent a lot of time in seclusion and restraint and in observatory rooms. No one ever seemed to look at the trauma I had faced. I was uncontrollable, so they inadvertently did to me what I had just experienced. They locked me in. They left me alone. They fed me drugs. They took away my power. They controlled me. Public mental health wards aren’t safe places. In my experience, men and women are not ever separated, the strong prey on the weak and there are stand-over tactics, bullying and sexual harassment between the patients.
You become a lab rat in an attempt to find “the proper treatment”. For example Lagactil or chlorpromazine made my muscles twitch and spasm. But in order to “give the medication time to work” I endured this for weeks. I was discharged with an incredibly high dosage of lithium and benzodiazepines. I recorded feeling as though I was “trapped under glass”. Within 3 months of discharge I started to have issues with my kidneys, and I stopped taking the lithium. I continued to take the benzo’s and developed an incredible dependence on them.
At 19, I fell pregnant and I straightened myself out. They knew about my mental health. It was the same hospital in the same town. Yet once again, after losing that child at 22 weeks, I was sent home without any psychiatric care or follow up. The dozens of suicide attempts in the next 6 months were dealt with at home. The hospitals had never helped before, so know one even bothered to try.
I have never had a relationship that wasn’t violent, co-dependent and unhealthy. I don’t cry or express my hurt and sadness, as my childhood taught me this was unacceptable. I punch walls and cut up my skin violently.
When I met my last partner, I stopped using drugs and alcohol, and severed all contact with anyone she deemed “unhealthy”, which was everyone. But the more connected I became to her, the worse my fear of abandonment became. I used her love for me as a weapon because I had no idea what to do with it.
It was her leaving me (the first time) in 2010 that put me back in contact with the public mental health system. I was so suicidal, my nurse friend had me admitted and I spent over a week in the acute ward, being placed back on lithium even though the doctors were aware of my past experiences. Once again, within months I developed kidney stones and early symptoms of diabetes and I was again stuck under the pane of glass. I’m an artist, a trained and qualified photographer, graphic and web designer. Creativity is everything to me. Lithium took that all away and my doctor advised me to stop taking the drug.
I started private therapy and received my ‘bipolar and borderline personality disorder’ diagnosis. I read everything I could about them and unlike many people; I found my diagnosis a positive thing. It was like finally finding the road after you’d been searching for it for 28 years. But I stopped going to work, would drink, take pills and cut and go to the ER sometimes up to 4 times a week.
The reactions were always the same. I am often berated for wasting their time, taking space away from people who are “actually sick and dying”, questioned about why I continue to do this to myself and why I kept coming back. It’s just “attention seeking”, it’s just narcissism
The reactions were always the same. I am often berated for wasting their time, taking space away from people who are “actually sick and dying”, questioned about why I continue to do this to myself and why I kept coming back. It’s just “attention seeking”, it’s just narcissism. There’s nothing wrong with me I just need to stop being so silly. I’ve received stitches without pain relief, I’ve received no medical care at all, I’ve been left to sit on the “crazy chair” (a plastic chair near the nurses station) for up to 9 hours. I was often discharged without seeing a psychiatric registrar because they were just too busy. I started to understand the curse of being in the “too hard basket”. Mental health services refused treatment to me and I even flew to Melbourne and used my girlfriend’s address to access a specialist service of which there is no NSW equivalent.
In June of 2011, I was admitted again after I had taken a toxic dose of lithium, damaged my nerves whilst cutting and drunk 2 litres of vodka over a 4 hour period. I had also hit my head. I complained about the pain in my neck and head. A lot. I was told that I was fine. I spent a week in the ward and was discharged.
9 days after my discharge, I was at home doing laundry when I was hit with the worst headache of my life. My partner resisted telling the ambos about my mental health issues, but eventually had to and they relaxed immediately and they diagnosed it as a severe panic attack. Begrudgingly took me to the hospital because of my elevated blood pressure, heart rate and inability to stand. I went blind. I could not walk. I could not talk or understand language. I was having a stroke. I was 28 years old.
I’d spent the majority of my life fighting receiving blows to the head. This had resulted in a dissection of my veritable artery, one of four blood supplies to our brain. My artery was blocked by a large blood clot. It wasn’t until I was given an MRI that this was picked up. The bump to my head preceding my last admission had resulted in part of the blood clot dislodging and hitting my trigeminal nerve, causing a stroke. It was 100% preventable. Had the clot been seen 9 days earlier, medication could have easily controlled and prevented the stroke, my neurologist offered to assist me in filing a complaint against the hospital. I spent 2 weeks on the neuro ward and a further month at home, learning to walk, talk and recovering from brain injury. I needed constant physical care and had to ease myself back into the world.
This highlights the neglect that I have seen within the mental health system to adequately deal with physical health issues in consumers on their wards. I have seen in myself and others, important medical issues overlooked by those in charge of the psychiatric units. This needs to be addressed immediately. My best friend was recently in a psych unit, discharged with a massive infection the psych ward refused to medically treat appropriately. We left the ward and went straight to the ER where she was admitted straight away, put on fluids, IV antibiotics and underwent surgery and a week-long medical admission. This is not ok.
After my stroke, life was incredibly difficult emotionally. Many brain injuries cause massive emotional and psychological changes and I was not immune to this. I developed severe health anxiety, suffered panic attacks and agoraphobia that I still work hard to conquer.
The stroke also had some amazingly positive effects. Learning to regain my independence again was difficult, but over the next two years I worked on remoulding my relationships. I told people how I felt, I opened up, I let myself be loved and learnt how to love in return. I refer to this time as my “stroke of luck”. The people who knew me would probably tell you I became a different person, and I think I did. Sadly, a lot of people around me couldn’t handle this change, and I lost almost everyone but a few people that proved themselves to be true friends.
During this time, I was a participant in the public health DBT program and saw a public health psychologist twice a week every week. His name is Andre and he saved my life. He is an advocate for consumer participation and if he was still in Sydney today, I know he would be here to listen to me speak. Over our two years together, Andre showed me a system that could work. He went above and beyond for me, always. He pulled every string, cashed in every favour and used his intelligence and tenacity to, time and time again, advocate for me and insist on best practice where I was concerned. He sat with me in the ER and observed the interactions between me and the ER nurses and then he questioned them. He kept me out of the long term ward that had caused me massive trauma as a child. He educated everyone around him about BPD, self-harm, chronic suicidality and DBT and the best thing about him was that he did this all WITH me. Not FOR me. I don’t think Andre ever believed in walking beside me in my journey. I think he walked a tiny step behind, trusting and encouraging me to lead.
The DBT program runs a weekly 2 hour ‘learning’ session as well as a private consult with appropriately trained psychologists and is not funded properly. It has a 6 month waiting list, and it takes on many of the most difficult patients they see; the self-harmers, the borderlines. It is based on Marsha Linehan’s 3 year DBT program and is an abridged version that runs for only 12 months.
Over the last year, things have taken a bad turn for me. My 7 year relationship ended, my mental health regressed severely, I started cutting and using again, I went back to a previous violent relationship, I became homeless and Andre left his position at the hospital. It’s been a shit year, but I’m still here. I have the public mental health system to thank for that. The DBT program taught me how to understand myself and the reasons behind my actions. It also taught me I had choices and options, that my behaviour was MINE to decide. That’s meant that, as bad as this year has been, I can maintain healthy relationships with my amazing friends and repair and restore any hiccups we might have. I am learning to cope with distress better and make better choices. This program saves the lives of incredibly vulnerable and disempowered women, most of whom do what they do just to try and survive. NSW HEALTH NEEDS TO FUND IT.
So, if I were to offer any suggestions on how to make this system work better, they would be:
- At first, DO NO HARM. Do not project your feelings onto your patient. They are not responsible for how you feel about them or their coping strategies.
- Give them TIME. We must stop the revolving door. People need to work in their own timeframes.
- LISTEN, LISTEN, LISTEN. Stop talking at them and just LISTEN. It is important to hear what is NOT said also.
- Look at the safety and security in your wards. If you wouldn’t stay there, why do you think I should?
- Understand that having a mental illness does not mean your patient doesn’t have the right to APPROPRIATE MEDICAL CARE.
- Educate yourself and your staff. Use best practice, not cheapest practice.
- Be aware of your power and control and how this is used. The consumer must always lead their own treatment. It should be on their terms, whenever possible.
- Look at the history. What has this person survived? Avoid recreating their trauma.
- Keep everyone informed. They should know what you know. They should be leading the plan, and their carers and support system should be included as much as possible.
- NEVER GIVE UP HOPE. If you give up on us, how can we have hope for ourselves?
I want to finish by saying this. Every morning I wake up and I make choices. Will I go to work today? Will I stay sober and clean today? Will I cut today? Will I be kind to a stranger today? I don’t have a choice to forget my shitty childhood, my lack of family support, or the things that I’ve experience that have hurt me in the past. But my mantra is:
NEVER FORGET, AT ANY GIVEN MOMENT YOU HAVE THE POWER TO SAY: THIS IS NOT HOW THE STORY IS GOING TO END.
The public mental health system needs to stop taking that power, it needs to EMPOWER the most vulnerable of people, not punish them.
Mahlie Jewell is a classically and technically trained freelance fine-art photographer, printmaker and graphic and web based designer. The images provided are examples of her work. You can see more of her portfolio at www.facebook.com/MJewellPhotography. She currently works as the web and graphic designer at Domestic Violence NSW.