Eating disorders: what you don’t see.

This Body Image and Eating Disorders Awareness Week, we sit down with Bronny Carroll, carer and Lived Experience lead at InsideOut Institute, as she shares her story in the hope it will resonate with others who are facing the same challenges and looking towards the same goal of hope.

Tell us a bit about your experience as a carer of someone living with an eating disorder.

I’ve been caring for our daughter for now about 25 years – so it’s a long time. During these years I’ve had to adapt my approach to the different stages of the illness and the co-morbidities that develop along the way.

With 3 other children in our family, it’s like walking on a tightrope making sure that no-one falls off or feels less loved or valued.

We have worked and continue to work as a tight family to keep all our balls in the air and if for any reason I can’t be there to support our daughter at mealtimes or indeed other anxious times of the day, then her sister will step in for me.

It’s been years of doing all that we can to keep her with us and to accept that quality of life is the goal.

My life has changed. Those longed for holidays can’t happen in the way that we all dream.  Accommodating time away or together takes an enormous amount of planning and preparation. Sometimes it feels as if time is standing still – but all around me life goes on at a pace. Children get married and have babies, friends travel. 

All those years ago, there was little available in the way of good service providers and understanding of just what it is to have an eating disorder. So much has changed with a tremendous amount of hard work and system support – but there’s still a long way to go.

What are some of the common challenges that people don’t see when caring for someone with an eating disorder?

The cost – financial and personal – on so many levels. For the person with an eating disorder – you don’t see the pain, fear and anxiety. Nor is it easy to understand. It’s easy to judge but important to think again. Even walking down the street, fearing that to see people eating will in some way eventuate in those calories transferring to the one literally suffering.

People coming home for drinks, or a meal poses a threat for the same reason. We watch as she withdraws.

The need for constant reassurance that everything is safe – and that her need to continue with the meal plan is medicine she can’t live without.

The loneliness and isolation that can result. The smallness of their world to feel safe.

That my daughter is not the eating disorder – she is clever, funny, giving, creative – and we love her. 

How has it impacted you and your family?

The transference of anxiety – the discomfort of trying to appear to be normal and sociable but the concern for our daughter.

The hurt we can feel when she turns away as we eat or prepare meals.

The separation of meal preparation – ours and then hers.

The control the eating disorder maintains in a family, it’s crippling impact on everyone.

What are some of the common misconceptions you would like to make people aware of about eating disorders?

Many of these are known already but one that recurs is that YOUR need to see change can’t easily be something the person with the eating disorder can accommodate. Kindly think of that before you make a judgement.

No-one chooses to have an eating disorder. It’s insidious – starts small and grows into the monster it becomes. It is not self-inflicted.

That it is not as serious as having cancer for instance or another life-threatening disease. It is – but the treatment approach and process are different – it’s not something that is as identifiable or tangible.

What are some key lessons you have learned along the way that might help others?

• That I would not survive without the love and support of my husband and family. Nor would our daughter.
• The absolute necessity for my own psychological support and our family’s needs for the same – together.
• The importance of maintaining my life separately. In other words, continuing to take time out, to work and to enjoy.
• To accept that I too am vulnerable and my need to be humble when I seem to ‘make mistakes’. To learn.
•  Not to lose hope and continue to be patient, loving but to stay strong.

What are some practical tips that have helped you as a carer of someone living with an eating disorder?

• When you feel you want to explode – and you do – be kind to yourself. Then reframe the situation and start again. Everyone needs to be understood – and deserves the patience and compassion – it’s more than a one-way street.
• Talk all your concerns and feelings through with someone you can trust be it partner, friend, psychologist, GP.
• Ensure that the team around you and your loved one are the right fit and speak up with any concerns or behaviours that you observe. You are the ears and eyes at home and can fill in the gaps the team doesn’t see.
• You need to feel safe and supported so that you can care and be supportive in turn.
• There is no shame to this – not for your loved one, you or anyone in the family or those close to you.

Please, please don’t lose hope – recovery in whatever way, shape or form that might look like is possible. There are some wonderful, special moments. Look for them in any situation and treasure them.

If you or your loved one is experiencing a body image concern or eating disorder, contact the Butterfly National Helpline: 1800 33 4673.