The Butterfly Foundation has today launched its 2019 MAYDAYs campaign, highlighting the struggle of more than two million people in Australia caring for someone with an eating disorder. 
Butterfly Foundation CEO, Kevin Barrow, said the launch of MAYDAYs – Carers Need Care Too is a crucial step in providing improved and effective support for the carers of people with an eating disorder.
“When an eating disorder enters a home, it impacts every aspect of a carer’s life whether it be financial, social or emotional – it consumes their every waking moment,” Mr Barrow said.
Not surprisingly, Butterfly’s Caring for someone with an eating disorder survey report also launched today found that more than 40% of carers have never sought support, despite a staggering 83% of respondents highlighting the impact on their mental health.
Other key report findings include:
- 64% of carers acknowledged that they would benefit from psychological support
- 78% lost work or their ability to study to be able to provide the support needed
- Others said it impacted on sleep (76%), relationships (76%) and social life (71%)
- 100% of carers reported that they thought their support in caring for someone with an eating disorder was more important than most of the other things they would like to achieve
- 81% of carers reported they were confident about their learned skills to support a loved one.
“At Butterfly we’ve long recognised how vital carers are and have developed carer support groups that focus exclusively on the carer experience related to eating disorders; however we need to do so much more,” added Mr. Barrow.
Butterfly’s carer support groups are confidential and supportive spaces, run by qualified specialist therapists, where carers of loved ones with eating disorders come together to share their experiences, skills and strategies, and to draw on mutual support. 94% of attendees to carer support groups say they found them either valuable or extremely valuable.
This year Butterfly hopes to raise awareness of the issue and much-needed funds to help expand the carer support group program, particularly in regional and remote communities where support is often not readily available.
Butterfly estimates a cost $1.3m per annum for ten locations, to roll out a national fortnightly program of carer support groups in collaboration with State, Territory and in-community eating disorder organisations.
The groups help carers like Kim Coffey, from Sydney, who has had to support her three daughters through their own experiences with an eating disorder, as well as her husband who suffers from depression.
“I now attend Butterfly’s carer support group and wish that I had been part of this group in the earlier stages,” said Kim. “I find it really helpful and I even completed a carer course. There is a camaraderie there and we laugh about things – people just don’t get it unless you’ve been through it.”
Caroline Laidlaw of Ararat in Victoria has been a carer for her daughter since she fell ill at age 12.
“Initially I didn’t talk about my daughter having an eating disorder; I didn’t want to feel let down by people’s reactions, so I wore the brunt of it myself. I had to give up both my job and swimming which I did every day. My physical health suffered but my number one priority was my daughter,” said Caroline.
Eddie Doyle, of Bow Bowing in Sydney’s outer south-west, said he thought eating disorders only affected girls and couldn’t understand why his son was so sick.
“I think I was in denial. I thought it was a phase and he’d grow out of it. I was wrong,” Eddie admits. “Three times he attempted suicide. I felt guilty to be classified as a carer; I saw myself as a father not a carer. It never crossed my mind that I would need support or help.”
Eddie’s experience is echoed in the survey report with a large number of carers who struggle with a range of emotions including anger, distress, guilt, fear, confusion, and helplessness. Carers said they often felt stranded and isolated because of the lack of carer support available.
“Butterfly is committed to building a strong national network of carers support groups,” Mr Barrow added, “and will be working with local communities and organisations to deliver these much-needed safety nets.”
Care support groups are held once a month in Sydney, Hobart, Gippsland and online but Butterfly hopes to eventually expand into other capital cities and regional centres.
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