By Bronny Carroll
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.
Empathy:
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 always 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 affects the whole family.
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.
Approach the whole person:
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.
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.
Reach out for help:
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.
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.
Continue to offer support:
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 focused. 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 treatment 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.
Kindness:
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.
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.
Dear Bronny
Always filled with compassion and grace. Beautifully written and so very true.
As someone who has survived SE-AN and is now in my mid 40’s, I wholeheartedly support your wisdom – that holding hope for your adult loved one, your child, your heart, is with empathy, compassion and unconditional love. Thank you, my friend, and thank you to all of you who care as you do.
Go gently,
Shannon
Thank you for this wise and heartfelt piece. Everything you say resonates with our situation. If only more people understood the complexities of this devastating illness which has not been chosen by anyone.
The trouble with reading this is when you have done all of the above for the past 5+ years and you constantly get abused, your house smashed up, her room kept in a pigsty, we worry about speeding of in her car, up all night when she is crying etc (having a bad day) refuses treatment, refuses to take meds, refuses to eat properly etc etc etc
This is the reality of an adult with ED in the house
She is destroying her relationships with her siblings and us her parents, effecting our marriage and sanity, it’s just a nightmare that we don’t wake up from,
and I’m sorry that I find it difficult to be kind to her anymore
Good luck to all on this nightmare of a journey
It SUX!!
Wow Kaz, my heart goes out to you and your family for what you are going through. I am in awe of your strength and courage in being there for her. What an awesome set of parents with such love and determination you must be. God Bless you all, and may you continue to find the strength to be there for her. Richard nz.
Kaz, I feel your pain and am in a similar situation. My 22 year old daughter refuses to get the right help for her ED, is currently on leave from work b/c she is unable to be reliable at work with this disease currently. Her outpatient team knows she needs a higher level of care but is abiding by her wishes as an adult to choose otherwise – yet they continue to see her and take her (my!) money in the process while she continues to get worse. I am planning to scale back my financial support unless she agrees to a higher level of care – this feels horrible like I am throwing her overboard with no life supports and I have to watch her drown but staying as things are feels like I am just enabling her to get worse and pretend at her recovery b/c she has a few appointments each week. I love her but I hate this ED – it is like an abusive relationship she cannot get out of – and, yes, sometimes I get angry with or at her for that (even if I don’t express it to her). I cannot understand why medical professionals cannot push for the right treatment if even they say her brain is not functioning properly so of course she cannot make appropriate decisions for herself. It is truly crazy making.
Just reading some of your posts makes me feel a bit less alone in this. My soon to be 22 year old daughter has been struggling with various eating disorders since the age of 16. After two hospitalizations over the years for other mental health issues, she has been refusing any professional help for well over two years. She has basically cut off all ties from her friends from the past, and the only person she will talk to about her struggles is me. She does not work, drive, go to school, or see anyone other than myself, her twin brother, and her grandmother on occasion. I am a teacher and when I get home after a 9 hour day with more work to do, I am coming home to another full time job. Recently, I have been struggling with feelings of anger and resentment because my life is not my own anymore, and she is refusing to take any steps to change things. I know I need to stop enabling, but I am just so tired. It is all just exhausting and too much to manage. I feel chronic guilt about my increasing frustration and resentment, but I am not sure how to get her to see that she needs help outside of me… and yes, selfishly, I need the opportunity to build a life outside of her. Crazy making is definitely the right way to put it!
There’s no doubt navigating relationships with adult children with ED is difficult. We are in a situation where our 19 year old attends college so is not in the home to see daily. She experienced sexual trauma at 14 which seems to have contributed to bulimia. We had her in outpatient care and found success with her former therapist, who no longer treats legal adults. Since then, we have tried other therapists but our daughter has found them lacking in comparison to her very good therapist at the initial level. Our daughter is no longer a practicing bulimic but is very dedicated to exercise and weighs her foods/manages her nutrition in what can seem excessive. However, she is now in good health, although on the slender side. Nevertheless, she lifts weights and truly is enjoying good health at the moment.
All of that said, I tend to look at her behaviors presently (focus on dirt and nutrition beyond the typical) as a way she can exert control over her bulimia. She feels the same way, but my husband/her father is having great difficulty coping with the fact that she is weighing her food, talking excessively about what nutrition she is gaining, etc. he feels like her behaviors are excessive, and while I can imagine they might seem that way, I truly do believe she is doing this as a method to control her underlying diagnosis and attempt to gain better health. If anyone has any advice on how to handle this situation, I sure would appreciate it. She was home for Easter and told me privately that she may not come home this summer at all because she’s just having difficulty with him and the way he comments constantly on her appearance and diet. I don’t want her to feel she cannot be herself in our home and she must always feel welcome here. If anyone has suggestions on how to better handle my husband or get him to accept this is not something to bring up constantly in a negative way, I am all ears. Or conversely, if I am being too excepting of her explanation regarding her behavior, please do feel free to say that also. I had struggles with bulimia as a younger person myself, so to me, it makes sense that she is trying to make sure she gains weight appropriately, exercises appropriately, and manage her diet with pinpoint accuracy.