Carer Recovery After Eating Disorder Recovery

Why do carers also need to recover as their loved ones’ improve? This blog from our volunteer, Karina Smith, offers some insights.

Eating disorders disrupt parenting, relationships, and families. This is the sad reality of a loved one living with an eating disorder. And once a loved one has recovered, caregivers are often in limbo. They don’t know how to ‘return to normal’ or even ‘what is normal’.

There is extensive research about the devastating toll of eating disorders on the young person, but there is very little research into the long-term outcomes for carers. Most carers would gladly prioritise investigation into the impact on them of their loved one’s eating disorder, but given how critical carers are in eating disorder treatment and recovery, it is stark how limited this type of information is. Researching for this article laid bare the scarcity of information about carers during and post their loved one’s recovery.

The long term impacts of having caring for someone with an eating disorder are not well documented in the literature. What happens after a loved on has recovered from a carer’s perspective are not clearly described. Anecdotally, carers have reported having repressed their emotions, feeling distressed long after their child had recovered, and difficulty trusting recovery which delayed carers’ ability to rebuild their life post eating disorder. In this context, EDFA in collaboration with Deakin University is conducting a study exploring the long term impacts of caring for an eating disorder and potential links with post-traumatic stress disorder. We hope that results will help inform the development of resources that can best support carers as their navigate a new normal.

Parental recovery after a loved one’s recovery is complex and convoluted, much like the disorder. And many carers would suggest they may never recover from the trauma. The Journal of Eating Disorders describes the impacts of eating disorders on carers in a July 2021 research article titled ‘Life is different now’. The article summarises that life post-diagnosis is a ‘new normal state of constant worry and ongoing vigilance’. The impact and demands of caring for a loved one and assuming the role of treatment provider were ‘life-changing’. For the carers interviewed, ‘life is different now’.

Additional Reading: Life is different now – impacts of eating disorders on Carers in New Zealand: a qualitative study

Carer recovery has many layers (too many to cover in one article), but five fundamental areas are often discussed on carer forums including Eating Disorders Families Australia’s support groups. These areas are:

acknowledging carer trauma
the lingering effects of hypervigilance
rebuilding trust
accepting a new normal
the importance of seeking professional help.

Carer Trauma

Carers have reported significant psychosocial impacts on family life, interpersonal relationships, and their own well-being. They are also burdened by economic impacts such as loss of income and productivity at work. Caring for a person with an eating disorder has also been linked to severe insomnia, anxiety, fatigue, and psychological distress.

The Mental Health Review Journal (2015) documented that around 50% of carers of people with eating disorders experience mental health difficulties themselves, and reported significantly lower well-being than community norms, carers of people with brain injury, and of people with dementia.

Additional Reading: Comparing carer wellbeing: implications for eating disorders

Caregiving may also lead to Post Traumatic Stress Disorder (PTSD), with the PTSD often undetected, and thus untreated. This is because the individual with the eatig disroder is usually the primary focus of both healthcare providers and the family at large.

Eating Disorders Families Australia’s (EDFA) Carer Experience Survey in 2023 highlighted nearly 90% of eating disorder carers said their physical and psychological well-being has declined as a result of their caring duties, and yet only 20% seek professional help.

With Federal Government funding, EDFA has a free, online, one-on-one counselling service to carers and families to address some of the traumas experienced by carers and families. If these issues can be addressed in real time, they may not even become a trauma. “Trauma is not what happens to us, but what we hold inside in the absence of an empathetic witness,” American clinical psychologist Peter Levine says.

Additional Reading: Peter A Levine – “Trauma th erapy for the future can be more important than trauma therapy for the past.”

Hypervigilance

Carer responsibility does not ease when a loved one enters the recovery phase. Constant worry and vigilance continue. The majority of carers remain hypervigilant due to the heightened and anxious state they have been in, often for years. Carers describe this feeling as ‘walking on eggshells’ or ‘jumping at shadows’ due to triggers, a prolonged adrenalised state, and the fear and dread of future relapses. The experience of caring for a loved one (often their child) 24 hours a day continues to influence daily life for carers long after recovery. Another experience of the nervous system due to periods of prolonged stress is shutdown or a feeling of numbness. This can lead to mental health challenges such as depression, if not addressed.

Additional Readings:

Rebuilding trust

One of the unfortunate realities of caring for a loved one with an eating disorder is the potential erosion of trust between family members. Eating disorders manifest in many ways and ‘they’ can be manipulative, dishonest, angry, abusive, and dismissive. These impacts have been reported in (the limited) reports as harmful to the relationship with the person with the eating disorder.

Restoring the relationship, often between parent and child, takes time and active work, particularly the transition from carer (supervisor, food arbitrator, medical advocate) to ‘normal’ parent or family member role. Healing the family is gradual after recovery – there should be no time limit or absolute expectations.

Some tips are to spend some time together doing activities that are non-food related, such as nature walks, creative and music activities, or a new hobby. Have your own support teams (professional or social). Try and separate family and therapy (that’s what the professionals are there for).

New Normal

New normal is a phrase that has its own definition in dictionaries and online. In part it was coined after COVID 19 and other crises, but has been in usage since World War I. Wikipedia defines new normal as ‘a state to which an economy, society, etc. settles following a crisis, when this differs from the situation that prevailed prior to the start of the crisis (the “old normal”)’.

Additional Reading: Wikipedia: New normal

Part of a carer’s ‘new normal’ may be the initial question: do you, the carer, ever recover? And this can inform what the new normal may look like. Acceptance is key for some normalcy to return after recovery, and finding moments of peace and joy in normal life.

Acceptance may include the fact that caring for a loved one with an eating disorder irrevocably changes your life, and others outside your eating disorder ‘bubble’ may not have the capacity to understand this.

Carers have reported that their expectations of life for themselves and their family members are often quite different than they were before the diagnosis. This is generally seen as a positive outcome – that life goals are more focussed on happiness and well-being rather than worldly success.

Professional help

Carers are integral to the recovery journey, have suffered themselves, and should have their own specialist support services. Carers have healthcare rights.

EDFA’s Fill The Gap counselling service is free for carers and young supporters (aged 10-17 years) of those with eating disorders. It can be accessed at any stage of the eating disorder journey and is a tailored, online, one-on-one counselling service provided by lived-experience experts.

During your eating disorder journey, remember that hope is a powerful emotion. Hope is the cornerstone of resilience and it markedly improves our mental health. It is more powerful than optimism because it includes your own agency, sense of power and vision for a better future.

Additional Readings:

About Eating Disorders Families Australia

Eating Disorders Families Australia (EDFA) is the only national organisation solely for carers and families of those with an eating disorder. EDFA provides support, EDucation, advocacy, and FREE online counselling services. Become a Member today. EDFA has a private Facebook forum, providing a safe place for eating disorder carers and family members to share experiences, seek advice and assistance, and find hope.