My daughter Ellie was diagnosed with Atypical Anorexia when she was just 14, in September 2021. She had a 4 week admission to hospital as she was medically compromised, discharged, and readmitted three weeks later.
The second admission made a huge difference, and was a real ‘circuit breaker’. Her psychiatric team, pediatrician and ourselves had a conference and the admission was to treat mental health issues.
I am aware this is not standard protocol, but thanks to the incredible support I received from EDFA, I was empowered to advocate for our daughter.
Peer Mentor Support
Alongside FBT, we also engaged privately with a “lived – experience” peer support worker who was able to offer support, and also empathise with our daughter and help her navigate the protocol driven hospital treatment .
And while we have respect for FBT, we also needed to monitor and adapt some of the protocols that were potentially damaging for our strong willed daughter.
Ellie is now thriving. Obviously we are incredibly thankful for the hospital support but I cannot express our immense gratitude for our individual peer support mentor who has made all the difference.
Turned upside down and inside out
Supporting our daughter with her eating disorder has massively impacted our family.
We have been turned upside down and inside out and at times we couldn’t recognise our beautiful girl. It has certainly taken its toll.
As parents and siblings we have all become acutely aware of what actually matters. I can write this now, with the hope that we are on the other side but I am very aware of how “lucky” we have been. Without the insight of friends who have walked this walk I know I could not have done this on my own. Life has pretty much returned to normal. Fear foods are systematically getting stamped out week to week. Family dinners are becoming joyous again. My older boys are trying to make sense of it all but most of all, we are just so happy to see the return of our girl.
We know it won’t be smooth sailing but we now have the framework and support in place if we need it again.
‘You know your child’
I was incredibly fortunate to have EDFA friends to lean on from the very beginning. This was a massive support for me when I was questioning the “medical model” and the support gave me the strength to question/query some of the “one size fits all” protocols. The advice by friends given was “you know your daughter'”.
We were never going to be able to sit and face off for hours over a meal. We knew we were never going to win that battle. So we chose compassion and kindness, not confrontation.
This is an insidious disease but thankfully my other children were “adults” at this time so they were able to offer support to their parents without compromising their own relationship with their sister.
Forever grateful for…
- having access to EDFA’s private Facebook support group, to hear about and share the experience of other families going through this journey and hear their wisdom has been invaluable… as has the ability to access learning tools and webinars.
- having a close EDFA volunteer who was available to counsel me in the darkest days is something I will not forget and will be forever grateful for.
- my daughter laughing from her bedroom talking to her mates way too late at night .
- my daughter coming out of her room modelling her recent shopping purchases.
- hearing her make some brave decisions to move away from some harmful friendships to find her tribe
I have learned…
How to tell the difference between a good day, a blah day, a tricky day, the ED influence day, or just normal teenage crap.
My girl knows she’s loved. We certainly did not have it all together when ED arrived but we absolutely know how to get help now.
My tips
Trust your gut. Hospitals have to be protocol driven but don’t accept everything blindly. If you know it’s counter intuitive for your child – speak up!
Find a peer support counsellor. I can’t emphasise this enough. This was a peer that my daughter could relate/talk/vent to who had actually lived this experience. No mention of food or numbers, just general wellbeing interest . Not in-your-face or expectation or exposing one’s soul to a stranger. Just kind, compassionate and understanding. I really hope hospitals can expand and incorporate this model in the future.
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