Accessibility Tools
Throughout our lives, we will identify with many different groups. We apply many labels to ourselves to help understand who we are and what we do.
For example, only recently did I start identifying as a Spice Girls fan. I’d gone nearly 26 years without really listening to a single Spice Girls song but a colleague mentioned how great they are and now I’m hooked.
Of course, identity is more important than ensuring our music taste is on point! It defines so much of who we are and, more importantly, who we think we can be. Our identity guides the choices we make, the people we spend time with, and the future we see for ourselves.
Throughout my life, I’ve given myself many identities. Growing up gay and queer in a regional area is not easy. The only times I heard the words ‘gay’ or ‘queer’ was when they were deployed as a derogatory label in the schoolyard. I was scared of coming out to my family – not because I was worried they would disown me – but because I was concerned it would negatively impact my ability to support my mum. Luckily, my mum was very accepting of my sexuality (though she still holds some grave concerns about my vegetarianism!). My other identities range are nerd, Whovian, student, mentor and, obviously, Spice Girls fan.
The one identity – one label – that describes much of my lived experience, but that I’ve never been totally comfortable with, is that of ‘carer’.
Identifying as a carer never quite felt right for me. For the first several years of providing care to my mum, who lives with complex mental health issues, it didn’t even cross my mind that I was a carer. When it did cross my mind, it felt like a trying on a pair of pants after indulging in a whole cake … it just didn’t fit!
The ‘carer’ identity felt wrong because the narratives I associated with the word did not mirror my own lived experience. For me, a carer was usually someone old (and caring for someone younger), someone caring for a person with a physical disability, or someone who cares for others in a professional capacity.
This script (as I think of it), was not my script. If I was in a movie and I was given the ‘carer’ script, I would probably think there had been a casting error. I saw myself as more of a supporter, an accomplice in the fight back against whatever challenges were facing my mum at any given time. If the demons were coming, I would be standing by her, ready to fight.
Not identifying as a carer was hard though. It made it nearly impossible to explain my situation to others. It was challenging to gather support and build the networks I needed to help me along the journey of supporting my mum. How could I even begin to explain the situation to my friends and colleagues?
At the time, I also felt guilty describing my situation as a caring because I felt like it devalued my mum’s strength and resilience.
On the other hand, ‘supporter’ does not adequately convey the challenges I encountered on this journey.
Sadly, there have been many times when my suspicion that others would not understand my situation was confirmed. For example, the number of barriers I faced throughout my education was ridiculous! The simple act of getting an extension on assignments was a nightmare.
If you know anything about modern university life, you’ll know the robots are taking over! Everything is digitised, including the process of getting an extension for an assignment. You have to locate an online form, meet all the requirements, tick the right boxes, send in the right evidence and then an administrator (or robot!) will magically grant you the extension or reject your request.
These forms and processes don’t really work when you’re caring for someone who is contemplating self-harm, and it’s taking all your emotional energy just to hold it together and provide them with support they need. There’s no medical certificates for when you’re having a bad day in your caring role.
Although when you’re enrolling for university, you’re asked many things about your identity – Do you have a disability? Come from a regional area? Are you an elite athlete? – there was never a point in my studies where I could easily let the university know I was a carer. Maybe I should have identified as an elite athlete because some days being a carer does feels like a marathon or obstacle course or synchronised swimming event! Try juggling caring, studying, working, and just being!
Now, what does this all have to do with my identity? Well, when all the processes and systems of the world don’t recognise your situation, and there is no reflection of your life in popular culture, you start to devalue your own lived experience.
I cannot tell you how many times I questioned my own value as a carer. It seemed the world did not recognise my situation. When I visited a school counsellor in the 10th grade, I was told ‘to just tell mum how I felt’, even though, at the time, my mum was in a near-catatonic depression. It made me feel like the world did not understand complex mental illness. It certainly didn’t understand that my identity as a carer was separate to my identity as son. This, combined with the deep community stigma towards complex mental health issues, made it challenging to reach out for help when I needed it most.
To bring this piece full circle, I want to quote the Spice Girls: ‘I’ll tell you what I want, what I really really want.’
I want youth organisations and places where young people live their lives to hear my story and many more stories like mine. Our stories have not been told widely in popular culture.
There are so many young Australians who care for and support family members for a number of different reasons. Our circumstances are not, and have never been, taken into account in the policies and processes of schools, universities, workplaces, government and corporations. Even when processes do exist, they aren’t usually tailored towards the needs of young carers, and require the young carer to go searching in their ‘free time’ between caring, studying and working. Organisations and institutions need to actively reach out to these young carers and provide them with support.
Finally, to all the young carers out there – "Keep your head up high, don't you know you are the superfly, and that ain't no lie" (thank you Spice Girls)! Whatever label you choose to use, whatever situation you’re in, you are valued.
You are worthy of support and it is your right to demand it from society.
'Be kind to your mind' is an initiative of SANE supported by Future Generation Global, in partnership with batyr.
It is important to maintain a sense of hope, and to develop practical skills. This can mean:
Coming to terms with the fact that someone you care for experiences mental health issues and that this is likely to have a serious emotional impact on you as well as them. There may be anger at this happening in your family, confusion or a sense of loss and grief at how the person has been changed by their mental ill-health. It’s important to acknowledge and talk about these feelings.
Developing a sense of balance between different types of support approaches. It can take time to figure out what this looks like, but it might involve:
Preparing yourself by learning as much as you can about the relevant mental health issue, and considering what you can reasonably do to support the person. Discuss this with other family members and the treating health professionals. If there is a type of care you cannot provide, then discuss with the health professional what arrangements can be made to provide it in some other way.
Living with mental health issues isn't easy. Caring for someone affected often isn't easy either, and sometimes first instincts are not helpful. Here are some information and tips that others have found useful:
When someone becomes extremely unwell, it can be distressing and confusing for others, as well as the person concerned. If you are concerned someone is at immediate risk to themselves or others, contact 000 or make contact with your local hospital.
If you are concerned, but there is not an immediate risk, contact Lifeline on 13 11 14 or Suicide Call Back Service on 1300 659 467. For more detail, see how to help in a crisis for guidance.
When caring for someone else, it’s important to remember to look after yourself and other family members too.
Contact SANE's free counselling support online or on 1800 187 263 for information, guidance, and referral.
Let them know you are concerned
If possible, choose a good time and place to have a conversation, where you are both feeling calm and have plenty of time.
Tell them what you have noticed that makes you worried. This shows that you care, and that you are there to help.
You can also ask how they are going, but be prepared to follow up a “good” or “ok” with “How are you really? I want to know because I care”. Or, you can mention explicitly why you are concerned – like any warning signs you’ve noticed.
Ask if they are thinking about suicide
Ask the question directly; “Are you having thoughts about suicide?” This might feel uncomfortable, but a direct question encourages an honest answer.
Remember, talking about suicide will not make a person take their own life or put ideas in the head. It provides the opportunity for someone to say how they’re really going.
Listen
Listening without judgment can help reduce the shame they may feel about their suicidal thoughts.
Try to understand what led them to feel this way. Saying things like “That sounds really tough” can show that you are listening and trying to understand what they are going through.
Don’t jump straight into problem solving or convince them they shouldn’t have suicidal thoughts. This can feel dismissive.
Encourage them to get professional help
Tell them you understand they are in pain, but that there are options other than suicide.
Encourage them to make an appointment with a GP or a trusted mental health professional. They can take someone along for support if it helps.
You can also contact a mental health professional or employee assistance program, family member or friend on their behalf. Or, support them to make an appointment.
Professional helplines are also available to help:
If you are worried about their safety right now
Many people experience suicidal thoughts in passing. Most people who experience suicidal thoughts do not die by suicide. But if someone is in immediate danger, call 000.
Sometimes, your gut feeling tells you something is very wrong. But if you are unsure, signs someone might be unsafe include:
If possible, stay with them until emergency services arrive.
Helping someone keep safe
If they are not in immediate danger, but experiencing suicidal thoughts, there are things you can do to help them.
Many of these actions are best discussed with a mental health professional, but you can start these conversations, or check in.
Take care of yourself
It can be emotionally challenging to support someone who is suicidal, so it’s important you try to keep yourself healthy.
You are not alone. SANE has developed a tool for family and friends of people who have suicidal thoughts or have attempted suicide. Developed in partnership with friends and family who have been there too.
LEARN MORE
If something is not quite right about the way a loved one is behaving, it can be helpful to think about any significant recent changes in behaviour or mood. It may not be a serious problem. But if there is a developing mental illness, then getting help early is very important.
If mental illness is identified early, then treatment can work early too. It’s more likely that the person will keep up good relationships with family and friends, and there will be less disruption of school, work, and everyday activities.
Related: Supporting someone having thoughts of suicide
‘I’d never lived out of home before. I felt isolated and alone, and I just couldn’t handle the stress alongside everything else going on in my head. That’s when things really took a turn for the worst, and I experienced my first episode of psychosis.’
Some behaviour is considered normal, but may be difficult to handle. People may be rude, argumentative, unmotivated or withdrawn. Often this is a normal reaction to stressful events such as a family crisis, relationship breakdown or physical illness.
In these cases, the person probably doesn’t need to see a doctor for assessment. Try to be as supportive as possible while waiting for the bad patch to pass. If the behaviour is disruptive or distressing for other people, or if the difficult behaviour persists, seek help from a counsellor, a GP or other health worker.
Some behaviour may be considered out of character or abnormal for that person. This may include:
These behaviours are a strong sign that something needs to be checked out by a doctor, particularly if they have been present for some weeks. There may only be a minor disturbance but a mental illness may be developing.
Related: The first steps
Some people who are developing a mental illness may use alcohol or street drugs to help feel better. These drugs will make symptoms worse, and can make treatment more difficult.
Drugs such as cannabis can also produce psychotic symptoms like those listed above. This may be short-term (a drug-induced psychosis) or can lead to a long-term psychotic illness such as schizophrenia. If someone’s behaviour worries you – or drug use causes problems at home, school or work – then try to get help for the person. A doctor can make a medical assessment to see if there is a mental illness which needs treatment, or decide if referral to a drug and alcohol agency for treatment would help.
Related: Cannabis and psychosis
Sometimes people don’t want to see a doctor because they feel they are being criticised, that others are against them, or because they feel frightened, anxious or angry. Some may have trouble putting their thoughts together to explain their problems.
It can help to talk things over when you are both calm and when you feel the person is likely to be cooperative. For example: I’d like to talk something over with you that’s been worrying me – is this a good time or shall we talk later?
Focus on how the person is feeling and try to stand in their shoes. Ask someone else to talk to the person if you do not feel sympathetic or are not trusted by them.
At first, try to focus on problems the person feels comfortable talking about. For example: I know you’ve been having trouble sleeping and concentrating lately – would you like to talk to someone about it?
You’ve been feeling very down in the dumps lately – shall we talk to the doctor and see if she can help?
Encourage everyone involved to think of the doctor as someone who can help, and who will not judge them. Suggest that you, another relative or a friend go along to the appointment.
If possible, discuss the situation beforehand with the doctor, especially if the person is reluctant to talk about how they feel. Write down some notes about your concerns beforehand.
If there is outright resistance to the idea of getting medical help, talk to the doctor yourself to work out a plan.
The doctor may be able to visit the person at home to make an assessment. If this is not possible, they should still be able to tell you where to get help and support – for the person and for the family and others who are worried.
Related: Guide for families, friends and carers • What I wish I knew when I became a carer •
Book a longer appointment and take this pamphlet with you as a discussion-starter. When explaining your concerns, give specific examples rather than vague expressions.
Instead of: Jack gets very frustrated, try Jack was so angry last night that he kicked his bedroom door down.
Instead of: Mia looks awful, try Mia wears dirty clothes to school and doesn’t wash or comb her hair any more – she used to be fussy about her appearance.
Instead of: Paul is very shy these days, try For the past week Paul has only come out of his room to get food.
Instead of: Donna thinks we hate her, try Last night Donna would not come out of her room or eat with us. She said we are all plotting against her.
Sometimes a person may be showing signs of mental health issues, but chooses not to seek treatment.
There are a variety of reasons why this happens. The symptoms of psychotic illnesses such as Schizophrenia, for example, may involve delusions, hallucinations, and disturbance to thinking processes – these can make it difficult for the person to realise or acknowledge that they have a mental illness and need help. The person may have stigmatising attitudes towards mental illness, which make it difficult to acknowledge the need for help. Or they may accept they have an illness, but not want to take medication, with the possible side-effects involved.
Whatever the reason, it may be that you are feeling concerned about their mental health, distress, or abiilty to manage their daily life.
Encourage the person to access treatment on their own volition and with your support. Here are some strategies to make communicating your concerns easier and hopefully more effective:
If the person is still reluctant to acknowledge a problem or to see a mental health professional, ask what is stopping them. Once you know what they are worried about, work together to find solutions to overcome these barriers. For example:
Remember that if at all possible it is best for the person involved to voluntarily seek help.
Don’t worry if your first attempt to talk isn’t successful. An initial conversation may plant the seed of seeking help in the person’s mind. By showing that you care and are not going to judge them, they will be more likely to come to you when they do decide to seek help.
If there is outright resistance to the idea of getting medical help, talk to the doctor yourself to work out a plan. The doctor may be able to visit the person at home to make an assessment. If this is not possible, they should still be able to tell you where to get help and support – for the person as well as others who are worried.
Someone refusing to acknowledge a problem or accept treatment can place family members and friends under significant strain, especially if the person is experiencing active symptoms. Don't think you have to deal with this situation alone, contact local mental health services, a helpline or carer organisation for advice and support.
The experience of mental illness not only affects the individual but also those who care about them. Families and friends can play a vital role in supporting a person with mental illness. Many in this role do not even think of themselves as a ‘carer’. They have found themselves in this role because they see it as part of their relationship with the person who is affected. They may be a parent of someone with a mental illness, or an adult caring for a partner, parent or friend. A child who looks after a family member with a mental illness, such as a parent, can also be a carer. Carers also may not necessarily live with the person they care for.
Whatever the personal relationship, caring for someone living with a mental illness can be stressful. It is essential therefore to look after yourself as well as the person you are caring for. Self-care includes looking after your own physical, mental and emotional health. Doing this can be sometimes be down to a matter of changing habits and attitudes. It need not take up a lot of time, or cost a lot of money.
A range of services exist to support family members, friends, and carers of people with a mental illness. These can provide practical, financial, and emotional support through services such as respite care, training, and peer support.
1800 242 636
Carers Australia is the national peak body representing Australia’s carers for all health conditions. It advocates on behalf of carers to influence policies and services at a national level. Services are provided by a network of State and Territory Carers Associations, including counselling, advice, and information.
An online eight-session course from Carers Australia, providing mental health foundations for carers new to their role.
Mental Health Carers Australia (formerly ARAFMI National)
1300 554 660
Mental Health Carers (formerly ARAFMI) Australia is a collective of organisations whose members have a relative or friend affected by mental illness. These organisations may have different names depending on the State and Territory where you live. Mental Health Carers Australia present the views and perspectives of carers and advocate for changes and services to improve the lives and wellbeing of people affected by mental illness, including carers and family members.
Mental Illness Fellowship of Australia (MIFA)
1800 985 944
The Mental Illness Fellowship of Australia is a membership organisation, representing at the national level, the interests of its member organisations and people affected by mental illness. MIFA has member organisations operating in most States and Territories.
There are lots of simple, everyday ways you can support someone who has a mental illness. Small things can make a big difference: being there to listen, keeping in touch and reminding the person that you care. Another powerful way to help is to learn as much as possible about the illness and its treatment. This will help you communicate more knowledgably and effectively with the person you care for and any treating health professionals. You can also share this information with family and friends to help them to better understand and provide support.
Being a carer can make demands upon your own physical and mental health too. Make sure you speak out to other family members and health professionals, for example, and ensure you get the support you need.
If you are concerned about your caring role or its impact on you, contact the SANE Help Centre on 1800 18 SANE (7263) for information, guidance, and referral for support.