Guest Post by Belinda Caldwell
Often I read on the Around the Dinner Table forum parents who are beyond the first intense months of refeeding but are suffering the relentlessness of how long it takes for the remnants of the disease to go away. And I soooooo empathise.
I was incredibly lucky to receive some advice early on from an ATDT member who became a real life on the phone mentor for me. Almost the best bit of advice she shared with me was her own daughter’s timeline of 3 years. The first year was horrendous, the second year up and down and requiring vigilance, and the third year much better. This really helped me adjust our expectations as I am usually a fairly impatient person – and for better or worse we have pretty much mimicked that timeline here. Our daughter was diagnosed 3 years ago last February.
Once our daughter was weight restored and largely free from the extreme ED behaviour we had seen, we had to still endure many many months of rigid behaviour that in many ways people outside the home never saw – eating only that which was required of her and at the required time, not able to eat with no one else in the room to ‘require’ it, rules about other things such as studying, struggling with some lingering fear foods especially of the takeaway variety. It is enough to drive you insane and improvements seem negligible. You can’t stray too far or get back to a full normal life.
However, I have the privilege of presenting the carer experience to clinicians at FBT training sessions here in Melbourne every 6 months or so. It is a great way to reflect on where we are at and how far we have come. I describe the improvements as like watching grass grow at times! Now our daughter is eating very freely, eats without people in the room (which I thought would never happen) and is increasingly managing her stress and reactions to it herself with support from her GP and psychiatrist. At the last session I could report my definition of being in recovery: daughter watching TV laying horizontal on couch, eating Nutella out of jar! And smiling!
But, it has struck me throughout this journey that there is an inherent tension between acceptance of this as your life for now and having the drive to keep moving recovery in a forward trajectory. I had a seminal moment where I had to say to myself, if this is the best it ever gets, is that so bad? There are families out there dealing with lifelong debilitating disabilities that will never go away. At least our child was moving forward with school, had some social life and was funny and witty to be with – if she could never eat without our support, well so be it. And that thought allowed me to enter a zen state which kept me sane and allowed me to make adjustments to how I dealt with the reality we were living with.
However, the vision of what recovery looks like, and constantly moving towards that, has to also be part of this process or our children will remain lost and more vulnerable to falling down the rabbit hole again. I had a very clear vision in my head of what I wanted for my daughter – I want her to be able to travel and eat sufficiently in changing environments, enjoy socialising which involves food without any mental debates, eat what she wants when she feels like it, feel well and relatively free of anxiety (can’t change her inherent personality). We named and defined behaviours which stopped her from doing these, and worked on them one at a time – often as opportunities or situations presented themselves.
I can’t say we are 100% there. In fact I broke my leg 8 weeks ago and that, combined with starting uni and playing in a new higher level basketball team, saw daughter lose some weight, increased stress and some small episodes of restriction. So scary and a good lesson for us all, including daughter. She gave herself a fright at how easily some of these thoughts slipped back in. We stepped back in and insisted on reduction of exercise and increase in food. She has decided of own accord to gain an additional 2 kg on top of her highest weight to give herself a buffer and see if some of the anxiety thoughts further dissipate. Meanwhile we watch carefully, we accept that we may always need to be ready to step back in as needed, and we nudge her to get back to the well recovered state we had seen her in.
All parents still in that horrid stage 2 zone, hang in there! This is a war of attrition and you are all heroes!
Belinda has been a member of Around the Dinner Table since 2011.