Carers are unsung heroes
The unsung heroes in any community are carers. They are the invisible army who provide frontline, unpaid care and comfort to the elderly, disabled, mentally unwell, chronic or terminally ill.
Data shows us that every day over 2.65 million Australians provide care and support to another person. The 2020 monetary value of unpaid care would have cost $A77.9 billion if replaced by paid care.
It is appropriate then, the theme for this year’s National Carers Week, 16 to 22 October, is Millions of Reasons to Care and making caring ‘visible, valued and supported‘.
Visible, valued and supported. Think for a moment about these three words. Not always ones immediately associated with carers. Invisible, undervalued and unsupported are sadly the norm for many Australians who devote countless hours, if not their life, to another’s care.
At the frontline of a mental, and physical illness
And, those who care for a loved one with an eating disorder are at the frontline of both a mental and physical illness, and can often-times feel invisible, undervalued and unsupported. Caring for a young person, who is literally battling for their life, is extremely distressing and difficult. And lonely and relentless. Eating disorders have one of the highest suicide rates of all mental illness (one in five will attempt suicide) and cardiovascular complications are the leading cause of death, with mortality five times higher than the general population.
These are confronting statistics for carers, generally parents, who continue to care on an often 24 hour basis for their young person.
Toll on carers is monumental
The toll on carers of those with eating disorders (ED) is monumental. Carer burden is very real, and can be detrimental to the young person, carer and family of carers who are not supported: visible, valued and supported. COVID-19 has made caring for young people with an ED even more onerous. Early research indicates the significant negative impact the pandemic has had on individuals and their carers.
So how do we help ED carers during National Carers Week?-
Make carers visible
Speak up: many carers feel they may be judged if they share their experience, or ask for help. A simple way to start (to be visible) is to allow one person to see you, to learn about your journey. Share some of what happens behind your closed door. Of course this can be difficult to action when overwhelmed and in pain, but visibility requires taking a small step forward and sharing.
Tell carer stories: the carer’s story often sits in the shadow of the loved one who is ill.
But we know carers need care too. A way for this to happen is through learning about their story. Agencies such as health providers, support groups and government departments are in an influential position to share carer stories, even anonymous ones, to make carers more visible. Any story form can be cathartic and expressive – writing, photography, poetry, vlogs – to show what caring is really like.
Make carers valued
Limited understanding and lack of education from others is often the reasons carers are reluctant to speak out. And remain undervalued.
Caring should be valued and respected by everyone in our community and discussions about caring should be facilitated at the grassroots levels in the home – right through to governmental level – with national recognition and financial support more readily available. Many full-time ED carers do not qualify for Carers Allowances, as questionnaires may not be tailored for mental health or eating disorders. The value of caring needs to be seen as a collective and valuable force.
Make carers supported
Caring for someone with an eating disorder is complex and multifaceted. It requires parents and carers to develop skills that may be counter-intuitive to their parenting journey so far.
There are a number of services and programs available nationally and also within the health care system. Reaching out to other carers and using all of the available resources reduces the feelings of isolation and reminds you that recovery is possible.
Two nationally recognised organisations that offer support for carers, and those with an eating disorder, are Eating Disorders Families Australia (EDFA) and The Butterfly Foundation.
EDFA’s ethos is: Together we are stronger. This ethos partners well with the 2022 theme: visualising, valuing and supporting carers. Collectively carers are stronger through peer support, connection, information and education.
National Carers Week is a worthy moment to pause and focus on the carer space. Words such as visible, valued and supported are of great importance, as they can influence beliefs, prompt action, and ultimately create change.
