Disruptive Companion Podcast ‘The Carers’
Living with or caring for someone with mental illness has its challenges – and when your loved one is dealing with an eating disorder those challenges can seem insurmountable.
In this episode of The Disruptive Companion, we look at the illness that is disrupting Australian families.
An excerpt from the Disruptive Companion Podcast by SBS, with special thanks to EDFA Carers involved in this episode.
Meet Sue
Sue had enjoyed a healthy and nurturing relationship with her daughter. They were close, friendly and supported each other until things began to go downhill.
Things started to change.
She started skipping meals and became aggressive and rude…
“I could say one word, it would be the wrong thing. She was so disrespectful to me, It was beyond belief”
Sue’s daughter was later diagnosed with an eating disorder. “Everybody felt like they were treading on eggshells around her – it was horrible”
Often misunderstood as a physical illness or a lifestyle choice, eating disorders are mental illnesses, accompanied by physical consequences and behavioural issues including mood swings, unpredictability and aggression. Carers often report changes in the personality of their loved ones.
“She as shouting and screaming and saying horrible things, getting quite aggressive, crying , not talking to us”
Meet Alex
Alex, who like Sue and many other parents noticed a significant shift in her daughter’s behaviour.
“All of those behaviours were very confronting because it was so different to how we knew our daughter”
Advocacy groups fear the number of people living with an eating disorder in Australia is rising and under recognised, leaving carers struggling to cope with the burden. Deakin University researcher Genevieve Pepin explains what it is like to look after someone with an eating disorder.
“Caring for someone who has an eating disorder has been associated with very high levels of psychological distress, of burden, very high levels of thought anxiety and depression that are actually higher than people who are caring for someone caring with Alzheimer’s, cancer or receiving palliative care”.
“At any given time, about 1 million Australians, or around 4% of the population are living with an eating disorder. Carers often feel helpless and ill-equipped to deal with confronting situations.”
One carer said “I would go into the bedroom and 5 minutes I would probably cry and then I would go back down and see her, as if nothing had happened. It was so very hard.”
Dr Pepin said carers often failed to take care of themselves, which does more harm than good.
“All the carers have personal needs, they would put these needs at the bottom of their priority because what is most important for them is to get their loved one better. And in the long term for the carer it means their overall health becomes significantly compromised. They need to care for themselves and look after their own health if they want to be a healthy carer who can actually support someone with an eating disorder knowing that eating disorders are so complex and challenging and difficult, and unpredictable as well”
But there is some support available
The National Eating Disorders Collaboration is an Australian Government initiative dedicated to developing and implementing a nationally consistent, evidence based system of care for the prevention and treatment of eating disorders.
“There is very little support for people. One hour a week with a psychologist when you’re dealing with it 24/7 is just not enough…It’s just such a big ask for someone with no medical background, to do what people are doing in hospitals, doctors and nurses and that is so challenging. Just some sort of support. People don’t see what we’re going through at home. And that support isn’t offered because nobody knows. Nobody phones you up and said ‘what happened today ”
“Carers need a space where they can connect with other people because isolation and stigma are very very strongly reported by carers, so a blend of education and support, where they can talk about how they feel”
Alex says “You realise you do need to practise self care or you can’t go the distance, because this could take years. Carving out pieces of time in the morning, or late in the afternoon, to have some normality in my life and just a little time out”
“The other thing that was really really helpful and essential to me getting through it was peer support from other carers who could understand all the horrible things that were going on for me at home. Sometimes you just felt really hopeless and wonder whether it’s going to go on forever. There were people who had been there and could empathise with me”
Meet EDFA’s Christine Naismith
“If a million people are suffering from this illness it’s potentially affecting 4 million people. As a parent of a carer the task is huge and it’s cruel, but it also impacts every member of the family. It is mentally and physically exhausting and financially draining because you have to pay for so many clinicians, psychologists, psychiatrists, dietitians, and therapies for yourself ”
EDFA has seen more than a 300% increase in memberships and we are seeing people younger and younger getting eating disorders.
“Any gender, any age, any ethnicity, any socio-economic background. These are not a choice. They are not a sign of vanity. Eating Disorders don’t discriminate. We need to break down the shame and stigma. Eating Disorders are very prevalent, and very dangerous and people need help urgently”.
Meet Alannah
“It’s a selfish illness and it turns your brain into a selfish machine where you can’t even see the damage you are doing to everyone else. I just didn’t realise how much care and support it would take to get me well – 24/7 around clock care. I don’t know how they did it – I can’t even comprehend how they put up with it and handled me when I was in such a bad way. I rejected all their love and support. I felt guilty but I couldn’t stop it”.
“That’s when I knew something was not right in my brain because that’s not a normal way of thinking”
Kindness of carers played a key role in recovery and possibly saved her life
“Mum was amazing – we didn’t have a fantastic relationship around that time. The eating disorder accelerated that a lot more and made me secretive, aggressive and rude”.
“She was incredibly kind and supportive. I love her – she saved my life and I’m so proud of her”.
“If you haven’t gone through it it’s very hard for people to understand. But it does get better, it really does. Relationships repair over time and I’m so deeply grateful to my family”.
“You just really step up. You dig deep. You do everything you need to do to help that person. Because they can’t do it by themselves – they’re not able to do it alone”
Listen to all five episodes of the incredible ‘Disruptive Companion’ Podcast Series here
