A family’s journey through mental illness

This submission is published anonymously. The writer shares her reflection on her journey as a mental health carer of 25 years to multiple loved ones as well as her own mental health journey.

The reflection was shared with her carer peer support worker in thanks for their contribution to her healing journey.  The listening ear and gentle reflection helped her feel less alone and manage some of the everyday challenges of caring while juggling her own recovery. She feels that the supports provided by MIFWA carers services have been invaluable in her navigating this journey. She also shared that she has benefited greatly from the insights and authentic connection provided by MIFWA’s CHIME recovery support.

I am sitting here while this experience is still reasonably fresh in my mind to reflect on recent dramatic events in my life. Why? Perhaps the saying that your story of living through your own worst days may become someone else’s survival guide. Perhaps at this precipice of deciding future direction that I feel like I have been dangling over for eternity, it is most relevant. The possibility of being a peer support worker in front of me, encouragement to explore it further as I have much to offer, leads me to thinking about my story and what I would share about what has been helpful for me. Not a map, no, as each person’s journey is so unique and unpredictable, I couldn’t venture an “x marks the spot” guarantee. Perhaps a fellow tourist’s reflection and a few reviews, for what they are worth.

I am not my story

yoga carer story

I am reflecting on my story. The backstory, the pivotal scene, and the happy ending (middle really, as I will not be here to reflect on the ending, and I am suspicious of their finality).

The pivotal scene, the moment I am lying on the floor (on my yoga mat which does little to ease the general discomfort). Leaning into the meditation passionately led by our facilitator’s voice. Ripe for meaningful experience, having just done a goal planning session and being reminded of the importance of claiming our power: I am going to find meaningful work … not I plan to or I’m going to try to. I am, I am.

I don’t remember exactly what she was saying as I lay there with inspiring music coming in peaks and waves, and surrounded by 35 other vulnerable, open women longing for release from their considerable burdens.

This thought hits me that I am not my story, this series of tragedies and dramas and monologues that I have been carrying around with me, etched into my mind and leaching into my soul. This visceral sense of undoing the immense bundle of limitations that had been placed upon me and that I had unconsciously placed upon myself. This overwhelming sense of optimism and excitement about my future and that anything was possible. I felt this strange thunk on my head and reached up and felt around and had this sudden realisation that it was a crown that had been dropped into place, where it should always have been.

I beam as I embrace the idea that it is a symbol (metaphorical of course, no crowns were gifted in the making of this retreat) of me stepping into my power as the main character in my own story as if the Queen of the fairy tale has come to claim her kingdom and free them all from the shadow of the menacing monsters that have long controlled the kingdom. Many bore the ferocious face of crippling self-doubt, the fiercesome fangs of worthlessness and terrifying talons of shame waiting to rip into the beleaguered folk who are struggling through the long days supporting their families.

My arms and shoulders relax into the floor in the dramatic sigh of undoing my burdens, letting go entirely. This feeling of relaxation I have never quite experienced before is remarkable for two reasons: the very insubstantial yoga mat but also the memory of years spent trying to relax my shoulders (including physio three times a week with many acupuncture needles, Pilates and TENS machines to no avail). I feel, what can only be described as light, unburdened in a way I never thought possible. I stand up more easily, I have an energy in my muscles that is usually lacking, even if my backside may never be the same again after its prolonged intimacy with the floor. My head is clear and pain free, a rare occurrence. I stand straighter, I am wearing my crown as my face smiles itself without my prompting.

Change is both slow and laborious and then sometimes dramatic

So, if I ask myself now, what happened in that moment? I have many thoughts about what contributed, how change is both slow and laborious and then sometimes dramatic. I had been slowly lightening my burden to good effect over the last few months, which is probably why I was there to begin with. Having hopped into a car by myself with someone I have never met before to go to a retreat run by a woman I had only met for one hour at a mediation class and was the only person I knew there. I would be sharing this space with strangers for a night and two days of workshops and bonding. I was a little desperate for connection, authenticity, transcendence from the drudgery I had been trapped in for some time.

I had been pulling threads on the crushing bundle I had been carrying for so long and examining them, slowly unravelling knots and throwing unnecessary and burdensome pieces away, discerning what was under all the dirty, disparate rags and whether it was worth keeping.

carer story 2022 headphones

The Brené Brown podcasts and books on my early morning walks by myself before the world came crashing down again. Listening to the messages on the power of vulnerability and how we are all worthy and the utmost importance of braving the wilderness to belong to ourselves above all else.

Listening to the Curable app for chronic pain and really taking in people’s success stories. Learning all about how our brain can generate pain long after an injury is healed or sometimes when it was never there to begin with. A smoke alarm still going off after a fire has been put out or perhaps there was no need to panic and that it was just burnt toast in the first place. Similarly, a brain when it feels unsafe will keep warning us that something is wrong until we tend to it. But also learning that the brain and nervous system can be re-wired when it is calmed and supported. The potential of what this could mean for other symptoms and experiences.

My health was important, I was important

Meditating, or more importantly perhaps, the commitment to doing it for a full 45 days before the retreat. Every day without fail, because my health was important, I was important. The conversations with a skilled, compassionate carer peer worker from MIFWA, helping me unravel the mess I had uncovered and which thread to follow.

The MIFWA CHIME mental health recovery group that I had spent time with over the last month, envisioning what recovery looks like and how it can be supported. Sharing hope, stories, tips, strategies, lows, gratitude and perhaps the beginnings of authentic connection. As Brené would say, true belonging requires you to be yourself without the hustle for worthiness. The knowing of having survived all my worst fears, everything I had devoted my life to avoiding.

The dissolution of a 16-year relationship as I was just ‘too mentally ill’ and not the person they thought I was. Incapable of following through to become the person I said I wanted to be. That instance allowing me the chance to step out of their characterisation of me, which I didn’t recognise, and rejecting the notion of needing to be fixed. Unable to shake the thought that they really didn’t have a good understanding of my motivation and perhaps projected a lot of their own worst experiences and deepest fears onto me. Feeling strongly that I had a right to embrace the idea of being a work in progress and a masterpiece simultaneously.

My voice getting stronger, my boundaries sharper, my potential and intentions clearer

carer story 2022

Starting to change my narrative of my life, supported by my peers in the recovery group; the strength I had shown, the knowledge I had earned, the sheer determination to persevere. The insight that I know how to live with mental illness, it is woven deeply in my life story. What I couldn’t live with were people’s assumptions and judgements and then the catharsis of realising that I didn’t have to.

Somewhere along the line in the meditations and wise reflections of Sarah Blondin, the kind whispered words, the message of self-compassion had sunk in. The only way forward was not trying harder and turning to my perfectionism but letting go of it. Making a commitment to myself to be kind and gracious and understanding and starting to find ways to put myself first. Reassuring myself that I was safe and that I would show up for myself. Starting to write love letters to my own heart and mind acknowledging their pain and hurt, their fear, expressing gratitude for their courage for showing up and trying regardless. Their willingness to fail differently.

Words from my own wise self, my observer. They were finally fully validated and felt belonging and unconditional love from the only source that truly mattered in the end. Not my husband, my parents, my bosses, my friends, my teachers but me. So much loneliness dissolving in those acts. I was never alone as I would always show up for myself. My voice getting stronger, my boundaries sharper, my potential and intentions clearer.

It just really didn’t matter, I had begun to hear the words of all the ways I was a failure and just see their lips moving and my wise self saying, “you can’t fully know me or define me” — yes queen! I had stepped out of my assigned role, and my power to create my new character was growing.  Climaxing in that scene as my wise self faced the battered down, overburdened, bitter complaining resentful hag and understood her for the first time before she vanished.  She whose self-worth had been so eroded that just months earlier devoted her time to plotting how best to permanently write herself out of her own story.

Transformed into the Queen who would rule with kindness and compassion, starting always with herself.

“I had stepped out of my assigned role, and my power to create my new character was growing.”


Carer Support Services with MIFWA

At MIFWA, we aim to provide mutual peer support, promote resilience and coping skills, and increase understanding of your caring role.

We provide 1-to1 support, social and support groups for carers supporting people with mental ill-health, as well as information, training and workshops. Click here to learn more.

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