• Self-advocacy is about speaking up for your needs, rights, and preferences within mental health care system. 
• You can self-advocate or another person can advocate on your behalf.  
• Understanding your needs and strengthening your communication skills are important aspects of self-advocacy, to ensure your choices are respected and appropriate support is provided. 

• What is self-advocacy?

  Self-advocacy involves asking for what you need and speaking up for yourself and your interests. You can do it on your own or with the support of an advocate or other person. Self-advocacy has three key elements: understanding your needs, knowing the kind of support that might help, and communicating these needs to others

• Understanding your needs

  It is difficult to self-advocate for what you are feeling when you yourself are having a hard time identifying what your needs are. However, recognising that you have needs as a first step is an important start. Once you recognise your needs, you can then begin to develop an understanding of acceptance that having needs is normal, leading you to build confidence, recognise your rights and to ask for what you need.

• Recognising feelings and emotions

  Recognising your feelings and emotions can be vital for impactful self-advocacy because emotions influence and inform what you say and do. This is the case for the person with complex mental health issues as well as their carers. As a carer it can be challenging to acknowledge your own feelings when the focus is often on the person you are assisting, sometimes even leading to the suppression of your own emotions. There are tools available to help you recognise and understand your emotions and practice this skill. For example, psychologist Robert Plutchik devised an emotion wheel based on eight primary emotions (see Figure 1). This wheel identifies your emotions but also the degree of the emotion you could feel at a given time. For example, within the emotion of joy, you could feel ecstasy or serenity. This can help you understand the range and complexity of your emotions which can inform the way you respond, react, and behave to certain situations.

• What does self-advocacy look like?

  Knowing your rights: there are resources available to help you understand more about what your rights are. For example, this video by the Independent Mental Health Advocacy (IMHA) organisation outlines a six-step self-advocacy model. One of the most valuable resources for understanding your rights as a mental health consumer is Mental health statement of rights and responsibilities.

  Building emotional resilience: emotional resilience refers to your ability to adapt, change or ‘jump back’ from a challenging and distressing mental and emotional experience. Building emotional resilience could involve:

  • practicing accepting yourself
  • learning how to establish and maintain boundaries
  • noticing emotions before they become overwhelming
  • learning how to have open communication about your capacity to care for yourself and others
  • connecting with others for solidarity and validation
  • recognising how emotions feel in your body
  • learning how to say ‘no’ or ask for help when things get too hard
  • developing strategies that allow yourself to effectively communicate what you are feeling.
  • developing different ways to express yourself

  Understanding what triggers your reaction to situations: being triggered results in the activation of the sympathetic nervous system to prime our body to protect us, and how we react informs our trauma response. Developing a sense of self-awareness about our trauma response may be helpful in maintaining composure when advocating for yourself and while being challenged in difficult situations. This can equip us with the knowledge and self-awareness to recognise when a situation may be distressing and help empower us to practice regulating our responses to stress.

  To learn more about the responses and symptoms associated with each, see The Polyvagal chart of Trauma Responses.

  Having a good knowledge of the health and social services system: navigating the complex mental health system across Australia can be quite challenging in terms of understanding which group to refer to in what scenario. A good way to start off would be understanding the several treatment and support options available so you can advocate for the one you believe is the best option for you. See SANE’s Treatment for Mental Illness Factsheet and Guide to Mental Health Clinicians.

  Each state or territory has a dedicated website explaining the ways to seek support and treatment for people with complex mental health issues and their carers. Some of the websites are listed below for further information.

  • Victoria State Government | Mental Health
  • Mental Health Commission for New South Wales
  • Primary Health Tasmania | Mental Health
  • Mental Health Coalition | South Australia
  • Mental Health Commission | Government of Western Australia
  • Mental health and wellbeing | Health and wellbeing | Queensland Government (www.qld.gov.au)
  • Find support services | Queensland Mental Health Commission (qmhc.qld.gov.au)
  • NT: Mental health | NT.GOV.AU
  • NT: Mental health and suicide prevention support in the NT (mentalhealthnt.com.au)
  • ACT: Mental health - ACT Government Self-Advocacy (Consumers) Mental Health

  Self Advocacy is possible by becoming a member of one of the Statewide Mental Health Consumer Peak Bodies which are Lived Led:

  • VIC: Victorian Mental Illness Awareness Council (VMIAC) VMIAC Home Page
  • NSW: Being Home - BEING - Mental Health Consumers Ltd.
  • ACT: ACT Mental Health Consumer Network Home - ACT Mental Health Consumer Network (actmhcn.org.au)
  • WA: Consumers of Mental Health WA (CoMHWA)
  • SA: LELAN | SA Lived Experience Leadership & Advocacy Network
  • TAS: Mental Health Lived Experience Tasmania MHLET: Mental Health Lived Experience Tasmania – experience, knowledge, change
  • NT: Top End Mental Health Consumers Organisation (TEMHCO) Home - Top End Mental Health Consumers Organisation (temhco.com.au)

  Self-Advocacy is also possible for Carers, Family and Friends through the following Carer Peak Bodies that are (Carer) Lived Experience Led:

  • NATIONAL: Mental Health Carers Australia Mental Health Carers Australia | Mental Health Organisation
  • NSW: Mental Health Carers NSW Mental Health Carers NSW - Empowering Carers for Mental Health Since 1974
  • VIC: TANDEM Home (tandemcarers.org.au)
  • TAS: Mental Health Family and Friends Tasmania Mental Health Families & Friends Tasmania (mhfamiliesfriendstas.org.au)
  • QLD: ARAFMI QLD Arafmi - You are not alone
  • WA: HelpingMinds is a Provider of Mental Health Education & Support in WA
  • NT: Mental Illness Fellowship of Australia (NT) Home (mifant.org.au) Figure 1: Plutchik’s Emotion Wheel

• Learning how to best communicate

  It can be important to understand your communication style when advocating for yourself or the person you are supporting. A good resource to help you understand your communication style is the Princeton | Communication styles. Practicing tools and techniques like assertiveness and preparedness can help grow your capacity for effective communication. Another good resource to learn effective communication techniques is the Carer Gateway – Skills Module #2: Effective Communicating Techniques

• Help for families and friends

  Below are some links to useful information for families and friends to support with self-advocacy.

  Self-advocacy and your rights:

  • The UN's Universal Declaration of Human Rights
  • Mental health statement of rights and responsibilities 
  • Speak Up Be Heard- Self Advocacy Toolkit 
  • [Podcast] The Square Peg - 98. (S8-E6) The fight for equality in education and work: an inspiring... 
  • Self-advocacy for the NDIS Workbook
  • Self-Advocacy Toolkit - Mental Health Family & Friends Tasmania (For Carers, Family and Friends)
  • How to Think More Assertively Module 
  • Mental Health Advocacy e-learning 

  Self-development, recovery and personal growth tools:

  • Improving Assertiveness Self-Help Resources
  • A bill of rights for confidence, self-esteem and assertiveness 
  • Developing Balanced Core Beliefs
  • Living Into Our Values - Brené Brown
  • The Transformation of Silence into Language and Action by Audre Lorde 
  • [Podcast]: Paradigm Shift with Ayandastood- Episode 10 Finding Your Voice
  • Polyvagal Theory: A Science of Safety by Stephen W. Porges
  • Why Healing Trauma Starts with Creating Safety

• Resources and support

  Resources for empowering us to keep speaking up:

  • Self-Care for Advocates 101
  • Staying Resilient Workbook by Amnesty International 
  • How Call Out Culture Is A Catalyst For Intersectionality At Work
  • Doing Activism My Way by Carly Findlay
  • The Revolution Starts With Me! Promoting Self Care & Preventing Activist Burnout by Nicole Clark & A...
  • Effective Activist Zine - An Evidence-Based Guide to Progressive Social Change
  • How to Use Activism as Self-Care
  • How to be an Activist Without Burning Out
  • [Podcast] Unlocking Us with Brené Brown- Brené with Laverne Cox on Transgender Representation, Advoc...
  • Solidarity with Palestine: Free Resources and Further Reading | Verso Books
  • Why self-care and collective wellbeing are critical to winning change

• Frequently asked questions

  Based on the discussion with a SANE Peer Support Worker about advocacy, agency, authenticity and the power of using your voice: Speak Up: The Power in Using Your Voice

  1. How do you build confidence in speaking up, especially about what your needs are?

  Practice accepting that having needs is ok! Practice thinking of yourself as a human being that needs certain things to survive and thrive which is help you move towards being able to embrace what you need. Know what your rights are – anything from knowing consumer rights when accessing care and treatment to thinking about what your human rights are in terms of safety and security in relationships. This can challenge how you think about your needs. Start to give yourself some grace – building confidence is hard and it can take a lot of work. Put values into action to help yourself feel more confident. How you act is quite subjective but some of the examples listed by the peer support workers were – caring about community, valuing honesty, practicing allyship and so on and so forth.

  2. How does speaking up relate to safety and self-expression?

  A quote by Audre Lorde shared by the PSW that really resonated with them was: “Of course, I am afraid, because the transformation of silence into language and action is an act of self-revelation, and that always seems fraught with danger.” Speaking up goes hand in hand with the experience of being perceived. There is a tension between safety, speaking up and people pleasing. While speaking up can be about expressing your needs and values, it can be hard for anyone who might have people pleasing tendencies. Speaking up can be confrontational and terrifying for some. You can start small by building trust in yourself, try to restore connection with your sense of agency by learning how to say no and cultivate a deeper understanding of yourself and your neurophysiological functioning.

  Additional resources:

  • Podcast: Episode 10 Finding Your Voice- Paradigm Shift with Ayandastood
  • The Importance of Safety, Belonging,Self-Regard by Margaux Feldman

  3. How can we put into action what our values are? 

  Start by asking, what is truly important to you? What do you like? The relationship that you have with yourselves can become a driving force for action in situations related to speaking up about safety and self-expression.

  A resource to understand what your strengths and values are to answer those questions:

  •  VIA Institute on Character - Strengths survey

  Be mindful of where you are at before you put anything into action. If you are feeling at limited capacity, come back to actions of:

  • Communication – “the best way to get what you want is to tell people what you want”
  • Choice – reconnect to your sense of agency of being able to make decisions, and choosing how you want to show up
  • Connection – to yourselves, to your bodies, environment, personal relationships, and community
  • Compassion – it is the utmost act of care, and it shifts the focus away from you to others
  • Creativity – move, imagine, express, create. Lean into the methods that become the vessels of what you value.

  A resource to read more about this topic:

  • Living Into Our Values - Brené Brown

  4. How can you feel more prepared for difficult conversations?

  Difficult conversations can look different for everyone. For someone it might be feeling prepared to disagree with a mental health diagnosis or for some it might to talk to their housemate about week-old dishes. A difficult conversation can be political, can be about life and death or can be about what to have for dinner.

  Some ways to feel prepared include being mindful of your approach – make a plan, be prepared, take responsibility for how you engage, acknowledge accountability in the circumstances. Have the capacity to engage with your words whenever you can. Be aware of your window of tolerance, which is, engaging in hard conversations only if you have the capacity to do so. Engage with a wise mind and be careful to not make assumptions.

  Be present, minimise distractions so you can actively listen, speak with honesty and integrity so you can trust the other person’s word too. Know that you cannot control how the other person responds. It takes vulnerability to be present and willing to accept accountability. It takes emotion regulation skills to be able to respond and not react. Recognise the difference between constructive criticism and attacking.

  Acknowledge the power and privilege in speaking up in challenging conversation and navigating conflicts. Be aware of the power imbalance that could possibly impact engagement (patient – doctor/mental health professional). Develop a sense of self-awareness about how you respond to stressful situations to recentering and maintaining composure when being challenged Nervous System Responses (for visual learners).

  Resources to help with difficult conversations:

  • DEAR MAN- Interpersonal Effectiveness Tool
  • We Have to Talk: A Step-By-Step Checklist for Difficult Conversations Be willing to understand that you may not always walk away with the expected outcome.

  Be willing to compromise and collaborate and knowing that sometimes walking away is the best current outcome for the situation.

  5. How might you be able to care for yourself while advocating for yourself or as a carer? What does self-care look like in practice when advocating?

  • Give yourself permission to feel your feelings – allow for your emotions to exist as they are destined to – do not repress, avoid, compartmentalise, distract them. Advocacy can be uncomfortable so practice tolerating discomfort. Speaking up can be loud, intense, unfamiliar, and stressful so build resilience towards discomfort.
  • Respect your boundaries – ask hard questions such as: how tired are you? Where is your capacity at today? Advocacy can be distressing at times, and we all have our limits. Be conscious of how your engagement in advocacy impacts your mental health – what are the risks that come up with being an advocate.
  • Mindfulness – can help keep in check what you can control in a situation and can also help sustain an advocacy practice. Recognise that sometimes advocacy takes time and patience, and you might be in it for the long haul.
  • Practice nervous system regulation techniques to manage stress and cultivate safety. Start here: A Beginner’s Guide To Polyvagal Theory by Deb Dana and for a fantastic resources of tools check this out -   The Nervous System Regulation Mega-Toolkit | 115 Exercises, Techniques and Practices
  • Embrace solidarity – lived experiences are so significant when practicing self-advocacy. Learn the importance of sharing perspectives and connect to other advocacy groups to feel a part of a community.
  • Ask for help – you do not need to know everything. Sometimes it can be validating to have another person hold onto hope for you when you might have run out of strengths to hold onto it for yourself.

Thirrili Ltd and SANE Announce New Partnership to Support Aboriginal and Torres Strait Islander Peoples. 

SANE and Thirrili Ltd are proud to announce a groundbreaking partnership aimed at enhancing support for Aboriginal and Torres Strait Islander peoples, families and communities who are bereaved by suicide or impacted by trauma following a critical incident. This partnership will establish a culturally governed and culturally safe online postvention Yarning Space, designed to provide tailored support in a culturally sensitive way. 

We have commenced the co-design process for our culturally governed and culturally safe online platform, which will be launched in the near future. The newly created online postvention Yarning Space will offer a safe and supportive environment where Aboriginal and Torres Strait Islander peoples, families and communities can share their experiences, connect with others, and access culturally appropriate resources. Thirrili Ltd and SANE is committed to prioritising cultural governance and safety in their service delivery models. 

By combining SANE expertise in mental health support and Thirrili Ltd’s deep understanding of cultural contexts, this collaboration aims to create a more inclusive and responsive support system for Aboriginal and Torres Strait Islander peoples. 

“I believe it’s incumbent on the Boards and CEOs of all mainstream mental health and suicide prevention organisations to be looking at how they are supporting Aboriginal-governed and led organisations to deliver culturally safe support services in recognition of the vital importance of self-determination to closing the gap efforts.” Rachel Green, Sane Chief Executive Officer 

“I am proud to be doing just that by applying SANE’s resources and knowledge to support Thirrili to grow its capacity, reach and service offerings as a digital mental health organisation in a way that respects its governance and leadership,” Rachel said. 

“Thirrili Ltd provides culturally governed prevention and postvention support to our communities. The partnership with SANE enhances our capacity to offer comprehensive and culturally sensitive services, ensuring that our people receive the care and support they need during difficult times.” Tania Brown, Thirrili interim Chief Executive Officer. 

About Thirrili: Thirrili is a proud Aboriginal and Torres Strait Islander organisation that is led by Aboriginal and Torres Strait Islander ways of knowing, being and doing. As an Aboriginal and Torres Strait Islander Community Controlled Organisation, we recognise the strengths of our communities and our strong responsibility to support communities in the aftermath of suicide or unexpected fatal incidents. We uphold protective boundaries for individuals, families and communities that allow self-determination in their ways of bereavement and healing. 

Thirrili – Funded by the National Indigenous Australians Agency.

Quick Facts

• Schizoaffective disorder (SAD) is a mental health disorder with combined symptoms of schizophrenia and mood disorders.
• It is often misdiagnosed or diagnosed later in life.
• The experience of schizoaffective disorder can be different from person to person.
• With appropriate treatment and support, a person given a diagnosis of schizoaffective disorder can live a healthy and fulfilling life.

• What is Schizoaffective Disorder?

  Schizoaffective disorder (sometimes referred to as SAD) is a mental health condition that can manifest in different ways for different people. It typically involves a combination of schizophrenia and mood disorder symptoms and can affect many different aspects of day-to-day life.  

  People with schizoaffective disorder experience psychosis and mood disorders. Psychosis is a defining feature of schizoaffective disorder and can manifest through hallucinations, delusions, and a distortion of reality.

  There are two types of schizoaffective disorder based on the main symptoms people experience:

  • Bipolar type is when people experience episodes of mania (feeling elevated in terms of mood and energy levels), depression (feeling low, hopeless, and very sad), or feeling both intense emotional states at different times. People can cycle between manic and depressive states, sometimes very quickly (i.e. within hours or days).
  • Depressive type is where people are affected and experience episodes of depression including symptoms such as low motivation, fatigue, change in appetite and sleeping patterns.

  As people with schizoaffective disorder often experience symptoms similar to bipolar disorder or schizophrenia, some people will be diagnosed with one or both of those conditions first. Sometimes people are given a diagnosis of schizoaffective disorder as a default because their symptoms don’t align with other diagnoses. Experts agree that more research into schizoaffective disorder is needed.   

• Symptoms of schizoaffective disorder

  Schizoaffective disorder is commonly diagnosed if a person presents with symptoms of psychosis (similar to the primary schizophrenia symptoms) and symptoms of a mood disorder (either manic or depressive) at the same time for a minimum of two weeks.

  The symptoms are divided into three main categories:

  1. Psychotic symptoms: include experiences such as losing touch with reality, hallucinations, delusions (false beliefs), disorganised thoughts, chaotic speech, apathy, and difficulty in moving.
  2. Manic symptoms: heightened energy levels and mood, increased social, sexual, and work activity, decreased need for sleep, engaging in potentially harmful behaviours such as overspending and rapid mood changes ranging from extreme happiness to anger.
  3. Depressive symptoms: symptoms of loss of motivation and interest, low mood, persistent fatigue, difficulty concentrating, change in appetite and sleep patterns leading to weight gain or loss, recurrent thoughts of suicide or death, and low self-esteem.

  Determining a diagnosis may include a clinical psychiatric interview carried out by a doctor or a mental health professional. This may involve tests, screenings and physical exams to eliminate other potential causes for the symptoms.

  • Causes of Schizoaffective Disorder?

    The exact cause of schizoaffective disorder is not fully understood, but several factors are believed to play a role: · Genetics: People may inherit a tendency to develop the disorder. · Brain chemistry: Differences in chemicals like serotonin and dopamine in the brain can contribute. · Environmental factors: Stressful life events like losing a job, going through a divorce, facing financial problems, or experiencing the death of a loved one can trigger symptoms. · Childhood trauma: Early life experiences may also set the stage for developing the disorder. Studies suggest that genes related to sleep-wake cycles and neurotransmitter signalling can be altered in people with schizoaffective disorder.

    • How common is Schizoaffective Disorder?

      More women than men are affected by schizoaffective disorder. It tends to develop at a later age in women than men and is more likely to be the depressive type. The depressive type is also more common in older people, while the bipolar type is more common in younger people. Symptoms usually begin in early adulthood.

      • Managing life with Schizoaffective Disorder?

        Managing schizoaffective disorder is an ongoing process, and it is important to work closely with healthcare professionals to develop a personalised plan. Managing life with schizoaffective disorder involves a combination of medication, therapy, self-care, and support from loved ones. For example: · Take prescribed medications as directed. · Attend regular therapy sessions. · Get regular exercise, like walking or yoga, and practice relaxation techniques like deep breathing, meditation, or mindfulness to improve mood and reduce stress. · Eat a balanced diet to support overall health and get enough sleep. · Avoid drugs and alcohol. · Maintain relationships with friends and family for emotional support and join support groups with others who have schizoaffective disorder for understanding and encouragement. · Break tasks into smaller steps and set achievable goals to avoid feeling overwhelmed. · Learn about schizoaffective disorder to better understand your condition and how to manage it effectively. · Keep track of symptoms and report any changes to your doctor or therapist. · Seek help when needed.

        • Treatment and support for Schizoaffective Disorder

          Schizoaffective disorder has many evidence-based treatments available, with treatments dependent on the diagnosis type. For instance, the treatment approach for an individual with depressive schizoaffective disorder would involve a combination of antipsychotic medication and antidepressants to manage the depressive symptoms. Alternatively, those with bipolar diagnosis typically receive treatment that includes mood stabilisers alongside antipsychotic drugs, which help manage mood swings and psychotic symptoms. Cognitive behavioural therapy (CBT) can be used as an effective complementary treatment option for some people. Through this, people learn coping strategies and skills to help reduce their symptoms. It’s important to note that not everyone responds to treatments in the same way, so make sure to discuss your treatment plans with your mental health team. Common treatment options include: Medication: Taking medication regularly can help to control the most distressing symptoms of the disorder. They can help you to feel calmer by weakening the delusions, and gradually reducing the frequency and intensity of the hallucinations. Talking therapies: In cognitive behavioural therapy, people are helped to monitor their thoughts, feelings and actions. Other types of talking therapy include family meetings, supportive psychotherapy and counselling, art therapy and self-help groups. Self-management strategies and education: Self-management strategies and education are crucial components of managing schizoaffective disorder. These approaches empower people with the knowledge and skills to better understand their condition, manage symptoms, and improve overall wellbeing.

          • Help for family and friends

            The family and friends of someone with schizoaffective disorder need care and support too — it’s okay for family and friends to prioritise their own mental and physical health while they support someone. There are many other people out there who share similar experiences, and many services are designed to help carers of people with mental health issues. · Check out our Guide for Families, Friends and Carers for more info. · To connect with others who understand what you’re going through, visit our SANE Friends, Family & Carers Forum. It’s safe, anonymous and available 24/7. · Mental Health First Aid Guidelines: Psychosis · Mental Health Carers Australia(formerly ARAFMI) · Other support groups for families and friends also exist, such as the NAMI Family Support Group.

            • Resources and support

              For crisis support, please call: Lifeline (24hrs) on 13 11 14 Suicide Call Back Service (24hrs) on 1300 659 467 13YARN (24hrs) on 13 9276 to connect with Aboriginal or Torres Strait Islander crisis support. SANE’s free telephone counselling service – 1800 187 263 To connect with others who understand what you’re going through, visit our SANE Lived Experience Forum. It’s safe, anonymous and available 24/7. For further information about schizoaffective disorder from SANE, please visit these website pages: · Sarah’s story with SAD | SANE · SANE overview Common questions about schizoaffective disorder - The SANE Blog If you are interested to read more about schizoaffective disorder please visit: · Schizoaffective Disorder | BetterHealth VIC · Schizoaffective disorder | healthdirect · DSM-5 | Schizoaffective Disorder · Schizoaffective Disorder - PsychDB · Schizoaffective disorder | Royal College of Psychiatrists (rcpsych.ac.uk)

            • References

              American Psychiatric Association (2013) Diagnostic and statistical manual of mental disorders: DSM-5. 5th edn. Washington, D.C.: American Psychiatric Publishing. Evans JD, Heaton RK, Paulsen JS, McAdams LA, Heaton SC, Jeste DV. Schizoaffective disorder: a form of schizophrenia or affective disorder? J Clin Psychiatry. 1999 Dec;60(12):874-82. PMID: 10665641. Paul T, Javed S, Karam A, Loh H, Ferrer GF. ‘A Misdiagnosed Case of Schizoaffective Disorder With Bipolar Manifestations’. Cureus. 2021 Jul 28;13(7):e16686. doi: 10.7759/cureus.16686. PMID: 34466319; PMCID: PMC8394638. Miller JN, Black DW. ‘Schizoaffective disorder: A review.’ Ann Clin Psychiatry. 2019 Feb;31(1):47-53. PMID: 30699217.

SANE is pleased to announce the appointment of Kirstie Allen, Nicola Farray and Luke Marshall to the SANE board.