15 Oct, 2023
Carers play an essential role in the treatment and recovery of people with eating disorders by providing a nurturing, safe, non-judgemental space to support recovery and a return to a better quality of life. While the nature of care can vary according to the relationship, it often includes negotiating treatment options, support at mealtimes, providing encouragement and perspective, and practical support such as helping with shopping, cooking, and medications.
Lived Experience Lead at InsideOut, Bronny Carroll, sees carers as an integral part of the treatment plan and team for people with eating disorders.
“I think anybody with an eating disorder certainly needs support, and being part of the treatment plan and team can make an enormous difference. Caring for someone with an eating disorder requires so much understanding and patience and If you're not included, it makes it very difficult to care properly. It's a really significant role that’s not to be underestimated.”
“I am part of the treatment plan team, so I can be the ears and the eyes at home where the doctors, psychologists, and psychiatrists can't be. I am able to fill the gap about concerning eating disorder behaviours - and equally and importantly that applies in the case of any hospital admission.”
“If a carer is excluded from the treatment team as requested by the patient, I can only suggest they have their own conversation with the GP. While the GP can't provide any confidential information, they can listen and more easily understand the dynamic and difficulties and keep that in mind’.
As each caring situation is unique, open communication and collaboration are key to a successful caring relationship and this is always a process of trial and error. Having an open conversation about what is and isn’t helpful, asking the one for whom you are caring HOW you can be supportive will enable you both to be on the same page. Again, when it doesn’t work for any reason, have another conversation, remembering it will always change.
Bronny believes that the way carers communicate is fundamental to the success of the relationship.
“Language - body language and verbal language - is very important. In a caring role, what you say, how you say it, facial and body expressions – everything ‘speaks’. The nursing guidelines on the InsideOut website provide a rich source of information on how to communicate with a person with an eating disorder.”
She is also adamant that carers need to remember their own wellbeing and find time for themselves. “This can be difficult to say the least. It’s an enormous emotional and practical commitment to care for someone with an eating disorder, particularly when it goes on for many years”.
“When you first start out as a carer you're terrified – it can feel like you're drowning. Quite frankly, you haven't got a clue. You are trying to keep somebody alive. And remember - you don't just have your loved one – there’s the eating disorder -the elephant in the room – constantly trying to disrupt and break relationships apart”.
She strongly believes carers should seek their own counselling.
“Without doubt, having your own counselling can really make a difference to your caring role. Having the support and opportunity to unload and talk it all through can provide a feeling of self-care and importantly the confidence to continue to navigate this ever changing role’.
‘It’s really important to not let your relationships - marriages, partnerships, children - suffer. it's critical that everybody is recognized within that framework and this in itself takes a lot of consideration and patience. Set aside some time on a regular basis to do something for you – it can be as simple as going for a walk, going out for coffee – just breaking the caring circuit and feeling part of the world. Go and do something that makes you feel better.”
She also advises carers to trust the health professionals caring for their loved one with an eating disorder and to use their expertise as a form of support for yourself.
“If the person you are caring for is in hospital, it’s not always necessary to be constantly at the bedside The nurses can be your best support - let them do the caring. Use that time to recharge your own batteries – go out to dinner, spend time with family. Make the most of knowing your loved one is in safe hands and you can do something completely unrelated to eating disorders.”
Ultimately, she advises that support for all involved and maintaining a constant, positive, hopeful outlook will make a difference.
“Never, ever lose hope. You're holding the hope that the person with the eating disorder can't at the time. Likewise, you need someone to hold the hope for you to and that's where having your own outlet is important.”
Further support and information can be found in SupportED, our online self-help program for carers of people with eating disorders.