I wish I’d known – Eating Disorder Insights

William Blake, a famous English poet, is known to have said that “Hindsight is a wonderful thing but foresight is better, especially when it comes to saving life, or some pain”.

We asked our members what they wished they’d known in hindsight…here’s what they said.

I wish I'd known about the benefits of EFFT (Emotion Focused Family Therapy*) earlier

Megan

The importance of lived experience recovery coaches and mentors

Zali

The extreme aggression that comes when the eating disorder is challenged. My daughter had never even raised a hand to her brothers before AN but in full flight it was frightening.

Janelle

That eating disorders are a combination of numerous aspects of the human condition such as neurobiological, genetics, environmental that differ for each person and each person requires a treatment solution tailored to suit them from the range of treatments available

Jen

FBT doesn't work for everyone - you haven't failed if it isn't working; Advocacy - do it for all of you; Inconsistency - you are given analogies of a child with cancer, but no similar support; No fault - none of us are at fault; Gratitude - I have learnt to be grateful for so many things; Self care - essential

Kim

Someone once told me to “put on my lead apron and get back in that kitchen” when I was really struggling ... on that day it was just what I needed

Kylie

As a follow on/ addition to separating out the eating disorder from the person I think realising that intense fear and anxiety underpins so much of the reactions to food, eating and weight gain and that it is really completely out of their control helped me. They are not doing this on purpose and it is not their fault. It is a brain based biological disorder. I think my realisation that every time an ED behaviour is followed that fear pathway strengthens in their brain and makes the eating disorder harder to treat made me more resolute. And then not letting my fear of her distress get in the way of making sure she eats and breaks ED rules in order to strengthen the neural pathways we want in her brain for both full nutrition and freedom from ED.

Kylie

Remind yourself you are the expert on your child - the clinicians may be expert practitioners but you know your child.

Kellie

The most shy, meek, quiet, gentle person i know was beating herself up- the ED was angry that the control was taken away...the things you learn along the way x

Jo

It was not up to me or any medical staff to fix or cure the eating disorder ED. It was (and is) a combination of: - time - patience and support along side. - trust/hope/unconditional love - consistency - medical team and ED knowledge from my side.

Kristen

Be strong. Insist on eating. Try leverage (which may or may not work). Keep educating. And follow your instincts.

Lauren

Prioritise self care, ask for help more often so that can self care be achieved, and learn about validating my daughter’s feelings rather than primarily using leverage to get the calories in, and dismissing her feelings at times because I was stressed, worn out, wanted her to do what needed to be done and plain didn’t understand how much her illness had to do with emotional regulation difficulties.

Megan

Be strong. Insist on eating. Try leverage (which may or may not work). Keep educating. And follow your instincts.

David

Expect the unexpected !! Always be on the watch - this illness can be very sneaky ! And follow your gut instincts - I wish I did more of this in the early months, but I guess that's in hindsight now that I know what I know 18 months in

Chris

Just knowing that we weren’t alone and for the endless compassionate ‘expert’ advice. Stories of hope also really helped - these stories really got me through in those early scary days!! I don’t know how I would have coped without the strive support groups.

Sami

Learn about the illness and trust your gut about what your daughter/ son needs. The current public health system has a very cookie cutter approach to the acute stages of EDs and it is definitely not a case of one size fits all. Feeding, a soft place to land and persistence are the foundations of the early stages... everything else depends on your child’s individual journey and you know them best. Don’t be afraid to advocate for them

Geri

That there is more than one type of treatment. Weight restoration doesn't stop all the ED behaviours.

Don

Trust your instincts more... don't listen to EVERYONE with advice and you will get through it to smell the roses xx

Vicki

That you can't force recovery on anyone, it has to be when they are ready. All you can do is ride the roller-coaster with them follow, follow the process and be there to help at any opportunity they show an interest in recovery. Also that the hospital is not responsible for my daughter's recovery, all they can do is help weight restore and make medically stable.

David

Don’t waste time and energy arguing with ED. You will never win an argument. Compassion and firmness. Be confident in your decisions about what needs to be eaten. And if you don’t feel confident, fake it. ED loves to find weakness and any sign of hesitation and will take advantage of it.

Jen

I wish I'd realised earlier that there was no rational basis to this illness and I could not expect my intelligent child to rationally see the dangers in her actions. Empathy and understanding but feeding and nudging towards recovery much more successful.

Merril

Being a part of this strive group was my saving grace. Without it, I’m not sure my daughter would be alive or I would be sane. Thank you to everyone on here

Michelle

Treat this like a job. take notes, ask questions, keep a record of everything.

Rob

Expect the unexpected !! Always be on the watch - this illness can be very sneaky ! And follow your gut instincts - I wish I did more of this in the early months, but I guess that's in hindsight now that I know what I know 18 months in

Chris

Our first psychiatrist at PMH told us clearly “it can take a long time to recover. The slower the recovery process is the better long term” of course I did not hear this. I wanted her well as quick as I could. Patience, silence (sometimes) and inner peace can make a difference.

Chris

Do you have a story to share?

Sharing your story can help other carers feel connected, understood and less alone.

We greatly value your contributions.

 

 

*EEFT was co-developed by Lafrance – presentations available here