… for many carers, the experience of caring has changed their lives irrevocably and highlights the need for adequate and tailored support services for carers. – Butterfly Report Raising the Alarm: Carers Need Care Too, 2019
Australian research has revealed a critical need for support for not only people with eating disorders, but also their carers. Butterfly Foundation, the nation’s leading support organisation for people affected by an eating disorder, has exposed this urgent need through research aimed at understanding the experience of carers caring for someone with an eating disorder.
Findings from this research, which included 468 carer survey respondents and 13 in-depth interviews, illuminate the intense and wide-spread negative impacts caring has on carers and the vital need for support and resources to allow for their self-care.
While many carers were aware of the importance of accessing support for themselves, barriers included a lack of time and finances, a paucity of services, fear of being judged, undermining trust and prioritisation of the person experiencing the eating disorder. The formal services that carers were most satisfied with were peer support and psychological support. Mostly they tended to rely on informal supports particularly family and friends. However, connecting with other carers made them feel less alone, was validating and allowed them to share advice.
Putting the patient before self-care
Many believed the system of care for the patient needed to be addressed before resources were put into carer support. Yet the intense and negative impacts of the caring, for many of the carers, suggests a crucial need for resources to support carers so that they receive the self-care that they need in order to fulfil their roles as carers.
Many carers deprioritised getting support for themselves. Some said that they did not get support because they believed that they needed to prioritise the person they were caring for and put all available resources into facilitating this.
“I tend to feel that it’s a little self-indulgent to worry about myself.”
Most turned to families and friends for support. Friends appeared to either be a great source of support or completely unsupportive, being judgmental and offering unsolicited advice. Some carers did not have time to invest in their friendships and lost friends along the way. Some carers indicated that talking to people who had cared for people who had ‘recovered’ from eating disorders, would be helpful in giving them hope.
“It would be nice to talk to people who had gone through it, know how to deal with it.”
Impacts of caring on the carer
Carers spoke about experiencing depression, stress, no sense of control and increased anxiety, and of having to subjugate looking after their own physical health to looking after the person they were caring for.
One of the most negative and the biggest impacts on carers was on family relationships and relationships among family members. For some, once the person was ‘recovered’, their relationships became stronger having been through the experience with that person. Others spoke of their relationships with partners deteriorating due to stress and a lack of time together. They spoke of heightened and frequent conflict between family members and having to ‘walk on egg shells around the person’.
Some carers felt they were being pushed away by the person they cared for and others were concerned about not being able to focus enough on their other children. Some lost friendships.
“There is a strong social isolation. I’m a very social person and for the past four years we’ve had little headspace or time to reach out to friends. Because it is very exhausting.”
Being a carer impacted financially due to both having to afford medical treatment and some carers, as well as those living with the eating disorder themselves, had to give up their jobs.
What carers wished they knew earlier
Carers spoke of the importance of self-care, getting professional help, disclosing to others and of maintaining relationships, hobbies and outlets. It was important for the person being cared for to see that their carer was being supported.
Advice that came up over and over again was the importance of separating the person from their eating disorder. For instance, not taking negative behaviour personally but rather being aware that it was part of the illness.
“You have just got to be really strong and realise that a lot of the things they do, all things that they do are the eating disorder and not them. So, when they are screaming out at you and saying horrible things, you … have to be strong and stand up and know that it is the eating disorder.”
Connection with others provides validation
Many carers expressed a desire for connection with other carers. They wanted to connect to know that they were ‘not alone’, to feel validated and to share advice. Some carers had not accessed support due to a lack of awareness about where to access support, a lack of time and finances, feeling like they did not need it, prioritising the care of the person experiencing the eating disorder, stigma, privacy and not wanting to undermine the trust of the person they were caring for.
Carers spoke of feeling validated and that they were not alone when able to connect with others sharing similar experiences. As well, respite was considered vital for maintaining wellbeing.
Severe and far-reaching impact
Overall, the findings illuminate the severe and far-reaching impact of caring on the lives of many carers. This included negative impacts on their relationships particularly on family relationships; having to de-prioritise other children; severe impacts on their own mental and physical health; and impacts on their finances and careers, including study. For many carers, the experience of caring changed their lives irrevocably and highlighted the need for adequate and tailored support services for carers.
The carer’s role changed depending on the age of the individual experiencing an eating disorder; the geographical proximity of the person with an eating disorder to the carer; and stage of illness. While some carers had good experiences with services, others believed that they had been totally failed by the system. This was due to the medical systems fragmentation, the paucity of services available and healthcare workers lack of empathy and knowledge around eating disorders. Services were often viewed as inadequate and punitive. Feeling like the people they were caring for were being failed by the system appeared to be a barrier to carers making self-care a priority.
The findings illuminated the severe and far-reaching impacts of caring on many carers. This included negative impacts on family relationships; having to de-prioritise other children; severe impacts on their own mental and physical health; and impacts on their finances and careers, including study. For many carers, the experience of caring changed their lives irrevocably and highlighted the need for adequate and tailored support services for carers. Understandably many carers were more focused on wanting good care for the people they were caring for and believed that their roles would be easier and less distressing if they were able to access the right care for the people they were caring for.
How to get help in Australia
In Australia, if you, or anyone you know is experiencing an eating disorder or body image concerns, you can call the Butterfly Foundation National Helpline on 1800 33 4673 (ED HOPE) or visit www.thebutterflyfoundaton.org.au
About World Eating Disorders Action Day 2019
This year grassroots activists, volunteers, and over 250 organizations in 40+ countries are calling for caregivers to receive support, health care workers to be properly trained, and access to immediate, evidence-based treatment.
Why We Can’t Afford to Wait
- Worldwide over 70 million people are estimated to be affected by an eating disorder,
- Eating disorders have the HIGHEST MORTALITY RATE of any psychiatric illness
- Eating disorders affect people of all genders, sexual orientations, ages, socioeconomic class, abilities, races, and ethnic backgrounds. It is time to take action.
- Good news! When treated EARLY and correctly, eating disorders have the highest and fastest recovery rate!
How to support World Eating Disorders Action Day, June 2, 2019
- Join the movement, show your purple on social media! Use hashtag #ShowUsYourPurple
- Follow conversation on social media. Use hashtags #ShowUsYourPurple #WeDoActNow
- Host or attend an event. See http://www.worldeatingdisordersday.org/2019-events-2/
- Donate. To support the work see http://www.worldeatingdisordersday.org/get-involved/participating-organisations/.
- Discuss eating disorders. Through open, supportive dialogue, we can create change.
E-book release: Come as you are, eating disorders can’t wait
As a Participating Organisation supporting 2019 World Eating Disorder Action Day, The Diary Healerhas released a new ebook, . Stories from around the world illustrate that recovery from an eating disorder IS possible, at every age. The first step, is to seek help. to purchase a copy for $9.97 (AUD) – all profits support eating disorder services.
Melissa is Head of Communications and Engagement at Butterfly. With a strong background in communications, marketing, fundraising and stakeholder management, she has worked in not-for-profit organisations for some years, including disability, health and mental health. Melissa says the recently released Butterfly report Raising the Alarm: Carers Need Care Too, clearly demonstrates the theme ‘Eating Disorders – We Can’t Afford to Wait’. The costs to carers are not just financial, with 83 percent of carers reporting a negative impact on their mental health, with 64 percent acknowledging they would benefit from psychological support – and yet more than 40 percent have never sought any sort of support for themselves.