By Bronny Carroll
Bronny Carroll and her family have cared for her adult daughter for over 20 years. Bronny is the Lived Experience Lead at InsideOut Institute for Eating Disorders and heads the development and execution of our lived experience strategy, program and operations across the organisation.
Caring for a loved one with an eating disorder can be an incredibly challenging role. Support people often experience feelings of isolation and burnout.
As your loved one gets older, there can be additional challenges. Caring for an adult is very different to caring for a minor. Legal guardianship is removed, you may feel shut out of treatment, and your caring responsibilities will likely shift.
Navigating this shift to adulthood can be difficult and it will look different for every family.
Here are five messages for the parents and carers of adults that might help.
Looking after an adult with an eating disorder is tricky and nuanced, and importantly, it looks different for everyone.
But there is one thing that every single adult with an eating disorder needs – and that is empathy. Serious empathy.
Often there is a natural empathy when children are unwell - but it doesn’t really extend to adults.
It’s important to remember that no one chooses to have an eating disorder. It is a devastating illness that brings extraordinary hardship and pain and can affect whole families.
One simple way that you can demonstrate empathy is through active listening and respect.
Listen to your loved one. Really pay attention to what they are saying in everyday interactions.
That means using active listening skills: making eye contact, using positive body language, reflecting back what they are saying to you and when responding, thinking before you speak.
What they are saying matters. Your loved one is an adult, and they deserve to be treated with the same respect and consideration as any other adult.
Active listening also means withholding judgement. When talking with your loved one, remember to create a safe, calm and non-judgemental space.
Try to avoid having important conversations when you’re feeling heated, angry, distressed or tired. This will likely only lead to unproductive discussions or even conflict.
Think before you speak. Act and don’t react.
Another key to caring for an adult with an eating disorder is to see your loved one as a whole person. No one wants to be labelled and identified by their illness. Each person has talents to offer and these must be recognised as part of the whole person.
People with eating disorders are still people. They need to be seen for who they are as a person, for all their strengths and interests outside of the eating disorder.
I think it can be really damaging to look at a person and only see the eating disorder.
A great way to practice this is to externalise the eating disorder. That is, addressing and seeing the eating disorder separate from the person. It is the eating disorder that is the problem – not the person.
Factsheet: Externalise the Eating Disorder
Factsheet: Separate the person from the illness
Factsheet: Helpful and unhelpful things to say
This also means actively planning for and doing enjoyable things together, away from food and conversations about food.
My daughter says that while she acknowledges that she needs help from her family and treatment team – she still wants to be seen, first and foremost, as a person with much to offer, and not as someone with an eating disorder.
Eating disorders can have a devastating impact on families. The practical and emotional demands of being a carer can be immense. In fact, people who support or care for a person with a mental illness are also at risk of developing mental health problems.
Looking after your own needs and wellbeing is necessary and important on what can be a long road to recovery.
SupportED: Skills training for carers.
Factsheet: Self-care for families and carers
I would advise carers to reach out for help and to reach out often.
Get all the outside help that you can and never be frightened to ask for help.
Do the research and find support groups, organisations and specialists that are near you and that can offer support. There is no need to feel alone.
That may be whole family therapy, individual counselling, or practical support from families and friends. Keep getting help on an ongoing basis, if you can.
There is a need for all family members to work together to fight against the eating disorder - and outside help is advisable to guide you through that.
Support and care for siblings is also very important.
It’s important that the other children are also heard, their experience and feelings are validated and that their needs are met. Eating disorders affect siblings too – and they also need love and attention.
Your role as a carer will evolve as your loved one reaches adulthood.
In most jurisdictions, young adults gain rights to make their own decisions about healthcare treatment. This includes the right for their health information to be kept confidential from their parents.
Further, the delivery of care for a child is generally more family-oriented, with parents and carers routinely invited into treatment. In contrast, when your loved one is an adult, care may shift to being more individual focussed.
As a result, parents may feel shut out from the treatment team and excluded from communications.
It is really important to clearly define and agree on what your role in their care will be and to ensure your role is considered as part of your loved one’s treating team.
Have an open and ongoing conversation with your loved one about what they might find helpful from you and what you think you can offer. This will mean you are both on the same page about your role in their care.
There may be circumstances in which they do not consent to your involvement in treatment. As a result, support people frequently feel that they are not involved in treatment to the level they want to be.
If this is the case, you still have the right to provide relevant information to the treating team and to receive general information about mental health, mental health treatments and carer support services.
Try not to take it personally if your loved one refuses your involvement. It is common for denial and secrecy to be part of the eating disorder, especially at first or if they are very unwell.
It is important to keep encouraging your loved one to accept support and offering your involvement in treatment planning whilst respecting their right to maintain privacy around some issues.
Finally, above all, be kind to yourself.
It is often difficult to find common ground between you and your loved one, and to have open conversations. But remember that carers also deserve kindness and respect. It’s a two-way street.
It is a long and hard journey being a carer. Along the road, you will make many mistakes. You will probably say the wrong thing, lose your temper or forget things.
I think it’s really important that you don’t hold on to the guilt and the blame. Just let it go and move on. Don’t take it all on. It’s not your fault.
You are doing your best and that’s all you can do.
This blog post was originally written for and published by our friends at F.E.A.S.T.