Engage Aotearoa

Category Archives: Recovery Stories

New study highlights stories of successful withdrawal

My latest paper has just been published in the open access journal, Therapeutic Advances in Psychopharmacology, as part of their special collection on discontinuing psychotropic medication.

You can read the full text free here: Service-user efforts to maintain their wellbeing during and after successful withdrawal from antipsychotic medication (Larsen-Barr and Seymour, 2021).

Abstract

Background: It is well-known that attempting antipsychotic withdrawal can be a fraught process, with a high risk of relapse that often leads people to resume the medication. Nonetheless, there is a group of people who appear to be able to discontinue successfully. Relatively little is known about how people do this.

Methods: A convenience sample of adults who had stopped taking antipsychotic medication for more than a year were recruited to participate in semi-structured interviews through an anonymous online survey that investigated antipsychotic medication experiences in New Zealand. Thematic analysis explored participant descriptions of their efforts to maintain their wellbeing during and after the withdrawal process.

Results: Of the seven women who volunteered to participate, six reported bipolar disorder diagnoses and one reported diagnoses of obsessive compulsive disorder and depression. The women reported successfully discontinuing antipsychotics for 1.25–25 years; six followed a gradual withdrawal method and had support to prepare for and manage this. Participants defined wellbeing in terms of their ability to manage the impact of any difficulties faced rather than their ability to prevent them entirely, and saw this as something that evolved over time. They described managing the process and maintaining their wellbeing afterwards by ‘understanding myself and my needs’, ‘finding what works for me’ and ‘connecting with support’. Sub-themes expand on the way in which they did this. For example, ‘finding what works for me’ included using a tool-box of strategies to flexibly meet their needs, practicing acceptance, drawing on persistence and curiosity and creating positive life experiences.

Conclusion: This is a small, qualitative study and results should be interpreted with caution. This sample shows it is possible for people who experience mania and psychosis to successfully discontinue antipsychotics and safely manage the impact of any symptoms that emerge as a result of the withdrawal process or other life stressors that arise afterwards. Findings suggest internal resources and systemic factors play a role in the outcomes observed among people who attempt to stop taking antipsychotics and a preoccupation with avoiding relapse may be counterproductive to these efforts. Professionals can play a valuable role in facilitating change.

Lindah Lepou’s powerful story of survival

Lindah Lepou is a Samoan transwoman, fashion designer, artist, and performer who recently shared her story in the form of a long prose poem called Blah Blah Blah, as part of the Pacific Arts Legacy Project from Pantograph Punch and Creative NZ.

This is an intense but powerful story that takes you on Lindah’s journey through growing up trans in NZ and Samoa, navigating stigma and discrimination, surviving physical and sexual violence, dealing with suicidal urges, and discovering her identity and personal power.

Lindah opens her story with an acknowledgement to ‘Le Va’. I love this concept. It’s like an ancient, indigenous predecessor to social constructionism and family systems thinking.

Jemaima Tiatia-Seath defines Le Va as “the relational space that connects people, things and elements. The sacred space between, the space that binds independent entities together, the space that is context, the space that gives meaning to things. A space not solely observed by the individual but also executed at wider institutional and societal levels. Pacific peoples inhabit multiple social spaces, hold various roles, responsibilities and standing within their families, villages, churches and communities, occupy a range of experiences, by age, socioeconomic position, gender identity, sexual preference, birthplace, ethnicity, disability, and religious/spiritual affiliation. Genuine Pacific cultural competency embraces and values all diversity. (See: Tiatia-Seath, 2018, The importance of Pacific cultural competency in healthcare, Pacific Health Dialog; 21/1: 8-9.) That can start to sound a bit academic sometimes, but when you read a story like Lindah’s, or any recovery story really, the many intersections come to life.

Lindah writes, “Ona muamua Le VA. Blah blah blah blah blah… Soso‘o mai loa AITU. Blah blah blah blah blah… GAFA Sāmoa and Pālagi lineage. A family of multidimensional artists. Blah blah blah blah blah… Solo Sāmoan mother and absent Pālagi father. Blah blah blah blah blah… I was born in Wellington, New Zealand (1973). Blah blah blah blah blah… Transgender. I was an effeminate child named ‘Aaron Lepou’. Blah blah blah blah blah…”

Later, she continues, “Blah blah blah blah blah… I create ‘Lindah Lepou’ with all the courage and qualities I urgently need. I wanted to kill myself. Blah blah blah blah blah… Performing Artist. I started dancing to express myself and build self-confidence. Janet Jackson and En Vogue were my obsession. Blah blah blah blah blah…”

Read the rest of Lindah Lepou’s story on Pantograph Punch here.

Alyssa’s Autism Acceptance Project

I recently discovered Alyssa’s Autism Acceptance Project online in a blog post by the project creator herself, Alyssa Bolger and her brother Lachlan, two teenagers on the autism spectrum on a mission to change their little corner of the world for the better. They are based in Australia but I found their story really inspiring and think you will too. I love solutions created by the people they are designed to serve. Insider knowledge is a special thing and it always seems a bit like finding treasure when I come across something like this. As a clinician, research is one thing, but it’s never quite as powerful as knowing real life examples of people doing well and what it’s been like for them. There’s a term for this, ‘the power of positive contact’ and it’s a key ingredient for creating accepting communities. This project has that in spades. You can find Alyssa’s Autism Acceptance Project and follow her family’s journey on Facebook at www.facebook.com/TheAAAProject/

Alyssa and Lachlan’s article on Reframing Autism gives us a real life example that totally busts the common myth that people on the autism spectrum aren’t interested in friendship and shines the light on the barriers that get in the way. All humans need friendship including people on the autism spectrum.

Alyssa and Lachlan write, “My name is Alyssa, and my younger brother is called Lachlan. We are both proud autistic teenagers and we are writing this post together (with a little help from our autistic parents), because we want everyone to know how important friendship is to us, as we know there are Neurotypicals out there who think autistic people don’t care about having friends.”

They go on to explain, “Lachlan and I have learned that making friends is all about having something in common. That’s why we started our Lego club called BrickTime a few years ago. It’s a safe place that’s seen lots of friendships, because of a common love of Lego. Some of the Lego builds have been amazing! We were even going to organise an exhibition to show off these builds, but COVID-19 put a stop to that. Hopefully, we’ll get to do it one day.

Along with BrickTime, the other thing we do as the AAA Project is travel to schools to talk to kids about autism. We started doing this because of a message that I received while I was the Telethon kid back in 2015. A young autistic girl (who was so happy to discover that she wasn’t the only autistic girl through seeing me on TV) sent a message to ask if I would be her friend. She said she didn’t have any friends in her small country town, because nobody ‘got her’. I would have loved to have been her friend but, unfortunately, I had no contact details for her (and I didn’t even know her name). So, we set off travelling around WA, in the hope that we might find her. We talked to kids from schools as far south as Albany and as far north as Kununurra. Lachlan and Dad did all the behind-the-scenes tech stuff, and Mum and I did the presentation.”

Read the full story here: Building Friendships Brick by Brick, by Alyssa and Lachlan Bolger on the Reframing Autism website.

Clinicians share their lived experience: In Conversation episodes 1-5

The In Conversation Series from In2GreatMentalHealth invites mental health professionals to share their lived experience to help reduce the stigma associated with mental-health difficulties in our communities and within the mental-health workforce.

Scroll down for episodes 1-5.
I’ve gathered together episodes 6-11 for you here.
Watch the full series on In2Gr8’s Youtube channel here.

Episode One: Clinical psychologists Dr Natalie Kemp and Dr Anna Sicilia introduce the series and talk about their lived experience and stigma in the mental heath scene.

Episode Two: Professor Patrick Corrigan in conversation with Dr Natalie Kemp about his lived experience and how things have shifted over the years.

Episode Three: Clinical psychologist Dr Nneamaka Ekebuisi talks about their lived experience of mental health difficulties and intersectional issues.

Episode Four: Mental health nurse Kate Snewin speaks about her lived experience of mental health difficulties and the impact of work culture on navigating this.

Episode Five: Dr Thomas Richardson talking to Dr Natalie Kemp about his experience of navigating lived experience of bipolar disorder as a clinical psychologist.


Clinicians share their lived experience: In Conversation episodes 6 – 11

In Conversation is a series of interviews with mental-health clinicians who have their own lived experience of struggling with their mental health from In2Gr8 Mental Health in the UK. The first five episodes feature Dr Natalie Kemp in conversation with Dr Anna Sicilia, Professor Patick Corrigan (clin psych), Dr Nneamaka Ekebuisi (clin psych), Kate Snewin (RMN), and Dr Thomas Richardson (clin psych).

Scroll down for episodes 6-11.

Episode Six: Dr Stephen Linacre, clinical psychologist, talks about his lived experience of significant eating difficulties and the professional work he does now in this area.

Episode Seven: Dr Inke Schreiber, clinical psychologist talks with Natalie Kemp about her lived experience of mental health difficulties.


Episode eight: Dr Rufus May, clinical psychologist talks about his lived experience of mental health difficulties and working in the mental-health sector.

Episode Nine: Michelle Jamieson, PhD candidate, speaks about her lived experience of mental health difficulties and issues of intersectionality.

Episode Ten: Professor Jamie Hacker-Hughes talks about his lived experience of the diagnosis of bipolar disorder, and working for many years professionally in the mental health scene.

Episode Eleven: Emily-May Barlow, Mental Health Nurse and academic, talks about her lived experience of mental health difficulties, in particular, of dissociation.

Highlights from Engage on Facebook

We Can’t Keep Treating Anxiety From Complex Trauma the Same Way We Treat Generalized Anxiety: Vicki Peterson writes “I’ve been living with the effects of complex trauma for a long time, but for many years, I didn’t know what it was. […] For those who have experienced trauma, anxiety comes from an automatic physiological response to what has actuallyalready happened. The brain and body have already lived through “worst case scenario” situations, know what it feels like and are hell-bent on never going back there again. The fight/flight/ freeze response goes into overdrive. It’s like living with a fire alarm that goes off at random intervals 24 hours a day. It is extremely difficult for the rational brain to be convinced “that won’t happen,” because it already knows that it has happened, and it was horrific.” Read more here.

Man Lessons – How to make a documentary about transitioning: “Over six years, Ben Sarten filmed Adam Rohe (who was assigned female at birth) on his journey into manhood, forming a friendship that to them has become as important as the documentary itself.” Read more here.

I was diagnosed with acute psychosis at 19. Here’s what came next:Kris Herbert reflects on her tumultuous mental health journey to share what she’s learnt along the way. She writes,”Our mental wellbeing is not fixed. It’s a shifting continuum and at the edges, we each have our limits. We all also have access to tools like exercise and meditation, good food and, hopefully, someone to talk to.” Read more here.

Researchers Find Lack of Evidence, Call for Halt to ECT: “A new review, published in Ethical Human Psychology and Psychiatry, re-assesses studies that compare electroconvulsive therapy (ECT) with placebo treatment for depression. The analysis also assesses the only five available meta-analyses that claim that ECT is effective.” In a press release, John Read, the lead author says “This body of research is of the lowest quality of any I have seen in my 40-year career.” Read more here. In related news, dozens of people have sued the NHS after experiencing a slew of serious adverse effects that they were not informed of before they consented to ECT procedures.

Inside Internal Family Systems Therapy: In this article, Ben Blum gives a detailed description of Internal Family Systems Therapy (IFS), including both clinician and service-user perspectives. Blum writes,”IFS therapy is upending the thinking around schizophrenia, depression, OCD, and more. […] In IFS, mental health symptoms like anxiety, depression, paranoia, and even psychosis were regarded not as impassive biochemical phenomena but as emotional events under the control of unconscious “parts” of the patient — which they could learn to interact with directly.” Read more here.

Find more on the Engage Facebook page.
www.facebook.com/engageaotearoa/

New issue of the Journal of Contemporary Narrative Therapy out now

The latest issue of the Journal of Contemporary Narrative Therapy is online now, free for anyone to read and full of great reflections like this quote from Rebecca Solnit…

“What’s your story about? It’s all in the telling. Stories are compasses and architecture; we navigate by them, we build our sanctuaries and our prisons out of them, and to be without a story is to be lost in the vastness of a world that spreads in all directions like arctic tundra or sea ice…We tell ourselves stories that save us and stories that are the quicksand in which we thrash and the well in which we drown… We think we tell stories, but stories often tell us … The task of learning to be free requires learning to hear them, to question them, to pause and hear silence, to name them and then to become the storyteller.”

Find the latest issue and an archive of past issues here.

Editors: Tom Stone Carlson, Sanni Paljakka, marcela polanco, and David Epston

A whole website of personal stories

We recently discovered Our Mental Story, a website dedicated to sharing the stories of people with lived experience of mental-health difficulties. We think it’s well worth a look. You won’t find stories categorised by diagnostic labels here though. Expect a list of titles like “I was crafty with my trouble making”, managing to save my ten sick days a year is an annual challenge”, “Have you ever experienced that deep tight feeling of not being able to breathe” and “everyone wants to fix me with a quick solution.” The site was created by Charlotte-Rose Ruddell and Liv Young began in 2016.

Find more here… 

www.ourmentalstory.com/

Have You Seen the Target Zero Documentary Yet? Watch Online

A very special documentary aired on Maori Television on the 15th of June. Target Zero highlights the need for suicide prevention strategies in NZ, Key to Life Charitable Trust‘s grassroots work across NZ, what gets people through and the solutions whanau and youth themselves are enacting in their schools and towns. IMG_0168

 

Engage Aotearoa would like to congratulate Mike King, Jo Methven, Tai Tupou and the rest of the Key to Life team on  the messages they have brought together in Target Zero. This is an inspiring example of what can come about when genuine people, with genuine passion, collaborate with their communities to fill community needs.

Watch Target Zero online here and share it on social media.

These are the kinds of ideas we need to be spreading.

New Poetry Book Charts Trauma Recovery Journey

Engage Aotearoa’s service director can most often be found sharing other people’s recovery stories and experiences. But in her spare time she is a poet, and writing under her maiden name, Miriam Barr, she recently had her first major collection of poetry published by Steele Roberts Aotearoa, one of New Zealand’s leading publishers of home-grown poetry.

Bullet-hole-riddle-FRONTcoverThe book features cover art by Elke Finkenauer and interior art from Andrew Blythe‘s untitled ‘No’ series. The back-cover reads, “Bullet Hole Riddle is a three-part narrative sequence charting one person’s journey to make sense of an unwanted history. Framing personal experience as a series of collective acts, Miriam Barr’s first major collection of poetry tells a story about the human psyche and the spaces between us.”

Those familiar with Engage Aotearoa will know what Miriam means when she comments on the Engage Facebook page, “I guess this [Bullet Hole Riddle] is kinda like my Butterfly Diaries story in a way. In poetry form.”

An Auckland Women’s Centre article by Sabrina Muck goes on to say, “Tied into the overall message of the book, it is worth noting its dedication, which tells us this is for the untold stories. Speaking with Miriam in the week following the announcement of the Roastbusters outcome, she felt this was particularly relevant in light of the young women’s experiences in that case, and the voices of too many survivors which continue to go unheard. Steele Roberts is to be commended for supporting this book on its journey and bringing Miriam’s voice into the public sphere.”

The CMHRT Board of Trustees and the volunteer team at Engage Aotearoa would like to congratulate Miriam for her poetic achievement and wish her all the best for Bullet Hole Riddle’s journey into the world.

Bullet Hole Riddle can be ordered online at www.steeleroberts.co.nz or from your local bookseller. Copies are available to borrow at Auckland City Libraries and the Auckland Women’s Centre Library. Check out reader reviews and share your own at GoodReads.com. Find out more about the book at www.miriambarr.com/bulletholeriddle.