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Lived Experience Mental Health Support – Not a compromised service

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Running any business is hard and running a lived experience mental health business can be both absolutely soul empowering and continually self doubt engendering. When a professional, a service or even a community member openly or subtly (same result either way) ignores or disregards your professional experience it becomes to feel disrespectful, frustrating and exhausting. It derives from a place of stigma and bias; based on the incorrect assumption that lived experience can somehow compromise the service provided. It can load noxious mental weight to your already experienced challenges. Between negotiating and proving my worth to those who hold steadfast to this narrow view, supporting APTF’s ,often maltreated, peers by our system failures and ensuring my selfcare to stay well, COVID has presented as a particularly tricky time for me. Sure, I could write another post to boost your spirit and positivity or I could be totally authentic and share how it really is and has been for me.  I hope this post serves to enlighten those with a conservative view point and provide some warmth and comfort to those struggling in these times. That is what lived experience is; a shared experience to help carry the load of the peers who trust us. I believe, using both my lived and professional experience, I do that very well. I was challenged by the first lock down, but I polished up my selfcare skills and even took on some new ones to see me through. The remaining lock downs are now a blur, to the point that I can barely remember when we arose from each restriction. Each isolation reprieve saw me become more and more anxious to venture back out, intertwined with not wanting to stay in either. All I know is where I sit now; feeling almost defeated. This is the closest I have come to that feeling of total worthless since I was acutely unwell after the births of our 2nd and 3rd boys. Don’t get me wrong, I am using coping strategies, just ones that are either really unhealthy and brain numbing, not soul nurturing. People with pre-existing mental health challenges can find these lockdowns additionally difficult. That is not to claim those experiencing these challenges for the first time are not. The difference is, there is a doubling of everything negative; the loneliness, the isolation, the connection, the lack of support and there is a total body and brain exhaustion that comes with trying to keep employing those positive strategies or find new ones. When I then need to continually prove my experience and worth as a lived experience mental health professional (as I do over and over again in advocating for our peers) it deflates me.  I disconnect. I feel without words to describe my emotion again. I begin to forget things.; only yesterday I forgot to run a zoom review of our sporting peer program, that I set up… That gutted me. And although I was close to breaking, that very error held me over the edge and instilled back in me a determination to continue, for myself and APTF. I have been fighting so hard within the system so they too see the worth of my peers the way I do, I forgot all about my passion to continue to invest in prevention and early intervention and in myself. Those kids, that club and the many parents who have backed my program as instilling resilience and essential life skills have just as much right to feel as let down in me, as I do in myself.  The program is small, but creating large impact within a safe sporting community for our future young people and their families. I am also disappointed that I have left my own health go as well, watching it as it waved me good bye. This morning I awoke with Gladys Berejiklian eyes, tired but quietly determined to make some changes; in myself and in consolidating the substance of APTF that connects with my life purpose and what community needs.  I hope I can share some of the journey with you as I get myself back on track again (who knows, maybe you will also see that I can struggle mentally and still provide reputable service, or especially so, given lived experience can be the unique gem in a conservative field for those who look outside the box. Kirstie Sign up for our future blog posts and news here

Mental Health System Experiences

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I Survived I am not ashamed. I will not sit quietly any longer. I am not ashamed to tell you my story. To tell you of my hospitalisation, where I experienced the very best and very worst of our mental health system, A system plagued with misunderstood children trying to be heard, A system full of passionate nurses working to help these children, A system that has failed so many in the worst way, A system that denies care to some of those who need it most, A system full of doctors who might tell me that my urge to kill myself and the voices in my head are just a product of my drug use and my friends that I “have to pull my socks up” and “just be positive” And that night I lost my faith, I said “I’m no longer believing in a system that tell me that my problems are just fake”. Kyle’s Journey-Part 1 My first brush with Emergency Mental Health That night I was brushed off and told to go home; “sleep it off”. Turned away by the system that is supposed to be there for those in need. Scared, suicidal and exhausted I left the hospital that first night with my mum feeling as though nobody even wanted to understand what was going on in my head. I left the hospital in the most chaotically peaceful state that one could find themselves in. Chaotic in the way that I was scared, sad. I felt betrayed by a system I always knew was not perfect but felt at least could do its job. The peace I found when I left the hospital was not that of serenity and calm, but rather a peacefulness within my brain that I had given up on myself, on my life. I no longer had anything to worry about because soon I would take my own life and this would all be over. My Family; My Life Line The coming days was a series of naps mixed with tantrums, panic attacks and whatever self-harm I could bring to myself without being caught by the watchful and caring eyes of my parents. I was compelled by the voices in my head to take my own life, that by me being gone, so would all the pain and destruction I bring to myself and those around me. That wasn’t my family’s plan though; they pushed me; they saved my life. The compassion and love I received from each of my immediate family members gave me some strength to continue on through my life, which at this point seemed to be a never-ending maze of sadness and sorrow. It wasn’t all up from there though; my time in the system had only just begun… I spent about a week at home before my first home visit from an outreach Psychiatric team (CATT). After a half hour talk with the two incredibly good men working for the outreach program it was decided that I should be taken back into hospital for further assessment and treatment. At this stage they thought I was experiencing early onset psychosis. A somewhat broken system with shining lights I was taken back to the same hospital I had been sent away from just the week before, although this time I was treated far better because of the call ahead by the outreach team. I spent one long night in the emergency room getting bits and pieces of sleep, an incredibly sarcastic smile and “back again?” from the mental health clinician who had turned me away last time. I was made to feel like a burden, like the bed I was taking was unjustified and could be better used somewhere else. And do I agree the bed that night could have been used better for someone else with a physical health problem? Yes, in an ideal world, a supportive and professional mental health system could stand alone and could have prevented my first and second presentation to emergency. We already tried the other options we had; private, public… Too risky, not risky enough… In an ideal world there would also be an emergency room just for mental health issues; in turn allowing the specialists from each hospital to focus on their actual specialist area, creating more opportunity for doctors to genuinely be able to treat an illness and traumatic incidents. Experiences, such as mine, might decrease exponentially. Austin Awesome The next morning I was transported to The Austin’s Children’s Psychiatric Ward where I would spend the next 4 days. As I arrived in the psych ward any cord in my jumpers and pants had to be removed, as well as all my shoelaces. My bag was searched and my Phone was taken. I remember looking at my parents. The look of distress on their faces, especially mum’s, made the situation even scarier. I spent my first night literally trapped inside a panic attack; crying and just wanting to be at home. Despite my troublesome first night and an urgent, pleading phone call to my parents to bring me home, my experience at The Austin, for the most part, was extremely positive. They boasted modern facilities, including a bedroom for each child, a small school and a decent sized outdoor area with tennis courts. There was a great games room with a pool table, massage chairs and gym equipment. As well as these facilities the case workers, nurses and doctors were incredibly good and clearly trained and experienced at dealing with and helping teens with mental health issues. The Austin provided me with an amazing team that, in my short time there, truly helped me and gave me some good strategies for dealing with my mental ill health. Unfortunately, these gems are very rare and can only benefit very few children, for too short a time. After 4 days at the Austin I felt as though I had started my journey to recovery and was looking forward to what

Brain takes a break. Body keeps score.

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The journey behind Mental Health Challenges: Brain takes a break, but the body always keeps score. I feel it would be highly hypocritical of me, given this is a Lived Experience Service, to only share my tools and strategies of past wounds from which I have healed. I feel it would also be highly hypocritical of me given my assertive community voice in decreasing mental health stigma and helping people to heal through sharing their very real and common experiences, to now hide behind mine.  The real story behind mental health challenges is not always pretty, is often raw and yes, it can be frightening. What it is often not (despite media representation), is violent or threatening, contagious or life changing for a bystander. What it is, is a strikingly common, lonely existence often hidden behind the closed doors of those you know. Not for me, not for my family and not for my community; not anymore. Mental Health Challenges: Then I remember parts of my first experience of *dissociation; some memories, but mostly feelings. Ben, a toddler, and Kyle, a few months old. I remember my sister-in-law dropping me flowers. I remember looking at my feet as breast milk splashed on the flower. I remember smiling and saying goodbye. I remember being on the bed, phone to ear trying to answer Anthony’s questions. Where are the boys?  I don’t know. Did you put them to sleep?  I don’t know. Tiredness. So tired, too tired, too scared to check on the boys. I could not have done something, could I? I could not check. I needed to sleep. The quiet, warm fog weirdly comforting. Of course, they were ok and of course I did not hurt them. I had put them down for naps and there they remained, I think, until Anthony got home. That dissociation, like this time, only lasted a short time. The subsequent fog, the disconnection from life and fatigue lasted well over six months. This was my first introduction to serious mental health challenges. Mental Health Challenges: Now… In the blink of an eye, all sense of time, place and self, gone… I may have even gone to IGA in my dressing gown. Yep, my very own customised dissociation. Some part of me knew I needed help. But *Self and the spoken word had suddenly evaded me; they were simply buried so deep I had no immediate access. There were no words for my boys; that it was happening again. No, not again. I text my mate, he respected my request to not call. I texted my Psychologist. She called. “Right. Back against something hard. Feet planted. Got it?” Unusually assertive, she went on, “who am I talking to?” I didn’t know, I only knew for certain it wasn’t Self.  I can’t clearly remember the rest of the conversation, common with a period of dissociation, but she reached Self enough to convince her/me that hospital was not the answer. Most parts of me, from my lived and professional experiences, actually already knew that. But there was a part of me that just wanted to sleep, didn’t want to talk, didn’t want to think and really didn’t care. An appointment was made for the next day and I went to bed. No one noticed Self wasn’t with me; I’ve gotten good at that. Holding onto Self I awoke the next morning like someone had siphoned every sniff of petrol from my tank. My mind was a fog, my body leaden and my voice unable to verbalise. Self was back, but she was totally and utterly exhausted. Son to school? Couldn’t drive. Shower? Couldn’t move. Eat? Desperately hungry but didn’t want food. Strangely I was not overly panicked by the experience, as I had previously envisaged I would be when I thought about it happening again. Apparently, my body had kept score. Like having a baby, my body had recorded that it had been here before. Like last time, my body had decided to put a stop to what my heart and mind could not; emotional and physical over-commitment. It became clear pretty quickly that I needed to re-prioritise my commitments and that doing it now, while my body (not my heart and mind) was in control, was the only way to do it. Fortunately, any negotiations with my heart and mind would be rendered useless by my body’s utter lack of functioning: movement (slow and limited), voice (by written word only), mind (one thought at a time, on only one subject at a time).  In a somewhat detached fashion I communicated my reduced capacities to my two volunteer organisations (knowing that once my heart and mind revived, I would grieve this and a part of me would take over and keep me doing what had brought me to this current state). My first experience of dissociation evoked a consistent experience of feeling present but not here. Of watching our two little (now big) boys and their dad living life. I was watching on, trapped within my silent and invisible bubble, disallowing me from entering their world. This time is eerily similar, but nowhere near as extreme. I am currently only becoming distressed when a part of me feels frustrated, sad or angry at my total lack of energy to engage. I am still in their world and I can still feel (but not yet reach) that passion and determination to continue toward their world. Moving Forward While my external voice and movement is slow, to the point where getting up and down is physically exhaustive, my internal voice and brain appear to be functioning as per normal. I think… Yep, there is the old doubt that creeps in and out still, as there is the sudden and crippling bouts of social anxiety when thinking about seeing anyone outside of my family, but those moments will pass. I know that now. My body has been keeping score and even though my tools are not yet working, I

All about Perspective

Lived Experience in Mental Health

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Professional/Lived Experience. Who decides? Who sets the arbitrary line to determine if or when I share my lived experience with my clients? Who decides if I use my lived experience in a way that is safe, for the benefit of our community and in line with best practice? Great question. The answer?  You. And you know what? A person’s rapport with a service greatly influences the effectiveness of it.  Of course it should always be you. APTF provides a customised balance of professional and lived experience in mental health to support clients walking their mental well-being journeys. We recognise the need for consumers to feel supported by a team who can connect and journey beside you; personally and professionally. My Experiences. Don’t box me in. There is a growing body of evidence and overwhelming community and professional support for incorporating lived experience in our professional mental health services. That is how we already practice at APTF. I am more than one experience and one perspective. Don’t box me in. I am a Consumer. I am Carer and I am Professional. During physical isolation I participated in Tandem and Victorian Mental Illness Awareness Council (VMIAC)’s Royal Commission into Mental Health feedback sessions. Tandem represents carers of those living with mental health challenges. VMIAC represents consumers of mental health services.  I was also invited to bring “my perspective” to an Insta Live this week with the Discovery College. As a result of my participation and my Discovery Convo gig I got thinking more about my lived and professional experiences. How they serve my life long passion of supporting others in their mental well-being journeys. Consumer. Carer. Professional.  Three aspects of my life not looking to alter in the short term. Three aspects of my life I am proud to identify with. Three aspects of my life I know assists other people in their journeys as consumers, carers and professionals. Professional Limits A set of often arbitrary and ambiguous codes, discouraging the sharing of lived experience, were pervasive in my time working within the family and health services field. With time, I shared a limited version of my lived experience. The professional scene demanded a somewhat sanitised version, however. A stark difference to how these experiences played out in actuality. I felt disappointed and alarmed at not being able to share experiences that could help those who shared their vulnerabilities with me. Thanks to VMIAC, Tandem, Discovery College, other like organisations and passionate individuals, we are now looking at a new world. A new future where lived experience may take its rightful place in the mental health service system. A Path To Follow is already here; in the future. Our entire service is based on a customised balance of professional and lived experience in life’s challenges. We recognise there is a need and a place for all experiences to best support our community in their mental well-being journeys. The Right Balance But surely not everyone with lived experience is a good fit to provide such support I hear you ask? I agree and disagree. Fence sitter, I hear you say.  Yep, I agree with that. With appropriate desire, training, guidance and ongoing support, those with lived experience can support others in their journeys. Without those criteria fulfilled however, there are risks abound, for all parties. That is why at APTF, we provide the right balance of experience and customise a service that best suits the needs of our clients. Our Youth Mentors are not professionals, but they sure as heck have lived experience. They certainly tick off on the passion and desire. They are trained, guided and supported at all times, from both my professional and lived experiences. I understand risk. I am fully trained and experienced in assessing, working with and intervening in it. We practise with the best interests of clients at front of mind. We use a “do no harm” approach and constantly assess and monitor risk. Where our lived experience can be shared within the do no harm approach and in the best interests of our clients, then we will share. The Future I hope we are about to enter a new world where ALL professionals in the field are able share their multi faceted experiences. Where our clinicians can take the lead of Georgie Harman, Beyond Blue CEO, who speaks with honesty of her lived experience with alcohol and depression. Hearing the perspectives of fellow consumers and carers in recent times has only consolidated our approach at APTF as the right one for us. The feedback paints a service system where consumers and carers often feel disconnected from the clinicians caring for them. Very much a scene of “them” and “us”. We need to develop a “we” team.  All members on the same page, managing the same challenges, for a common purpose. A person’s recovery needs to take place with their chosen professionals, inclusive of that person’s family and community supports. A service that pays respect to and mindfully utilises lived and professional experience can attain all of that and more. I am very excited about that! I am also very excited we are already working within a model, providing services that our community is very loudly saying is needed. Professional and Lived experience; walking beside you. If you want more information about our services or are in a position to financially support our service, please contact Kirstie.

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