Lived-Experience Advice from our Forum
As part of our strive Carer Support Program, we offer a private, daily support forum on Facebook – a 24/7 community for parents and caregivers of those with eating disorders, run by carers for carers. It is a supportive community and a safe, confidential, comfortable space for adult caregivers.
And, it is a place to go for sharing some excellent practical advice, and wisdom from parents and carers who ‘get it’.
We asked the question ‘What is the most helpful piece of advice, knowledge, article, resource or link that got you through the early days of your eating disorder diagnosis?
We’ve compiled the best Advice from our ‘Newbie’ thread here.
Please note that these are written by parents who are caring for a loved one, and not a professional or expert in the field. We have left names off for privacy reasons.
Know what you’re dealing with
Feed Your Instinct an excellent early detection online questionnaire for parents who are concerned about their child’s weight, body image or eating habits. Answer the questions, print out results & the list of tests that the GP should check. These printouts will empower you to insist that immediate action is taken, rather than a ‘let’s wait & see approach’ which often happens on first presentation. Time is critical with an eating disorder, so early detection & urgent action to refeed gives best chance of a shorter duration of illness & less suffering for all the family
Refeed Early
The key is to introduce the refeeding as early as possible into the illness to try to repair brain & organ damage & allow for natural growth which also needs to occur. This can be a long process though also, not just a matter of weeks or months. Every person & situation is different.
Separate the eating disorder from your child
My advice is to separate the eating disorder from your child- it makes it slightly easier to cope with the violence and the abuse, when you are challenging ED!
Know what you need to get to
One of the things I struggled with in the beginning was where my D was, where she had been and where she needed to get to. While you don’t want your child to focus on numbers, the carer really needs to know these.
You can do it!
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.
Be positive…but not naive
Definitely separate the eating disorder from your child and don’t be so naive to think you have got this like I did in the early days. I really didn’t and thought I did. I remember reading other posts and thinking oh my daughter isn’t like that at all and oh she isn’t that bad when in fact she was and I was too naive to see it.
Realising it is out of their control
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.
Be resolute – strengthen those neural pathways
I realised that every time an ED behaviour is followed, that fear pathway strengthens in their brain and makes the eating disorder harder to treat – and this made me more resolute. I didn’t want to let my fear of her distress get in the way of making sure she eats and breaks those rigid ED rules. We needed to strengthen the neural pathways in her brain for both full nutrition and freedom from ED.
Find the resources you need
The resources that made the biggest difference:
Eva Musby (early on in our journey)
FEAST and Maudsley parents websites and resources
FEAST distress tolerance video for managing my emotions better.
EFFT video for connecting better and validating her feelings.
Tabitha Farrar books for understanding things better from the sufferers point of view and concept of neural rewiring.
Parent groups – this group, and Around The Dinner Table. I didn’t think I needed this at first. I was completely wrong!!
Summary: I needed to become a very compassionate brick wall when it comes to food and eating.
And for those are new to this (if you’ve got to the end of this very long post) it really does get better and you will get your kid back.
Help your loved one gain insight
“Unpack your eating disorder” book sent out by EDFA gave my daughter some insight into the illness and subsequent buy-in to treatment.
Put your big girl pants on (for want of a better phrase)
Some days you want your old life back and you can’t face another meal with ED’s arguments (it’s too much food, I feel sick, my tummy hurts, what have you added to this, I didn’t have this much last night, this lasagne looks different, I had a bigger snack so I should be able to have less……it’s exhausting every single day for months. At times like that a good friend told me “you’ve just got to put your big girl undies on and do it”. So this image stayed with me and was my mantra when I was feeling weak. I pass the undies visual on herewith! ..
Ask for compassion. Ask for advice. Ask for support
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 EDFA’s strive Support Group tbh. 
EDucate yourself
I tell everyone to read ‘Surviving FBT’ by Maria Ganci 🙌🏻 Siimple, easy to remember, quick to read and really practical. That was our bible when our brains were in overdrive and we couldn’t think straight.
Lower expectations on loved one
Realising 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 was much more successful.
You know your child best
Remember that you know your child the best, never forget this when you are swamped in a health system of professionals even when they say they have treated x amount of ED patients. Follow your instincts, they are there for a reason.
Learn and trust your gut instinct
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 ❤️
Be patient. Recovery takes time
Our first psychiatrist told us clearly “it can take long to recover. The slower the recovery process is, the better it is long term” . Of course I did not hear this.. I wanted her well as quickly as I could. Patience, silence (sometimes) and inner peace can make a difference.
Educate yourself
FEAST’s ‘First 30 days’ program is a great start to educating those new to the ED journey.
Upskill and Educate
Huge upskilling is required and absolutely essential for any co-occurring co-existing conditions to be investigated early on, and try as best as possible to work out the interrelationship between diagnoses. Most typical pshychology/pshychiatry treatments focus on personality and character and don’t look into the temperament of the person. When they do there is a high possibility better outcomes will be achieved and the person will “get it” and get into treatment without delay.
Nourishment is key
The longer they are undernourished the more the ED takes a hold and the harder it is to recover. The most difficult thing we ever had to do was get our daughter to keep eating after her 17 day hospital stay. There was no help available until the hospital admission. Anyone waiting for help google Eva Musby.
All that hard work has paid off. She is now a healthy normal 14 year old who we will always watch like a hawk. The thing I am loving at the moment is hearing about the new friends she is making at school. I asked the FBT psychologist about giving her information about her ED. She said move on with life, she is better. We have taken that advice.
CEED Resources are also fabulous
Find a course!
This Carers Course caters for all ED.
Understand what your loved one is going through
This TED Talk helps understand what our loved ones are going through. Dr Laura Hill TEDx
FBT is not for everybody. There are other treatment options
Speaking to other Aussie parents about FBT being unsuccessful for them too was helpful. I felt like I was a failure because it wasn’t working for us, in fact it was a disaster. I found that overseas groups really focused on FBT as the only treatment, I never really thought I had other options. And reading books that didn’t focus on FBT, I found that I could mix up different treatments to make a specific pathway for us to follow.
One size doesn’t fit all !
I’m a physio and if a child comes in with balance problems, I don’t give the 5 year old the same activities to do as the 10 year old…. I think of anorexia treatment for my daughter the same way! Neither are one size fits all.
Weight Restoration – what it really means
This video was was really helpful in understanding what weight restored really means.
Knowing what to look for when your loved one is becoming medically unstable
How to monitor medically to know when you are in deep trouble and to get to hospital (and fight for admission under the criteria). Literally life saving info – Particularly postural heart rate and symptoms of broader organ failure – blue feet, yellow around face, vagueness, no urine or faecal output.
Resources Guide to Admission and Inpatient Treatment
Assessment and treatment of children and adolescents with eating disorders
The importance of co-regulation and reducing fear
Learning about Autonomic Dysregulation and Polyvagal Theory (Stephen Porges) and the importance of co-regulation and reducing fear in helping my daughter feel safe. Watch the video
This is your most important job
Treat this like a job. take notes, ask questions, keep a record of everything.
Do a course…watch some video’s!
For those in Victoria on a waitlist to get Clinical help, EDV offer a free 8 week Carer Coaching program . Find it here.
Take part in the Shared Table Carer Coaching online program
Watch some video – Eva Musby has some helpful videos.
Logic and facts don’t work
I wish I had understood that I couldn’t talk her out of the ED with logic and facts. I was told it wouldn’t work but I couldn’t help but keep trying and it caused us both more stress. It would have been time better spent validating and just sitting with her through her distress.
Ask questions!
I wish I had asked more questions. We did FBT – there was so much great information that I was unaware of until joining this group. I did not know about the Eating Disorder plan and that it would cover 40 psychology sessions. I did not know that my son would be eligible for a health care card and I could get a carers allowance. There are so many great resources I have found, all through scrolling posts in this group. ThanksI
Poodle Science – and a supportive village
Who would have thought two words would help my daughter so much. Poodle science. Highly recommend watching this on YouTube. It blew my mind and I’ve sent it to all our friends and family. I’m not sure how to put in words how it’s helped my daughter, but it’s like it’s lifted the weight off her shoulders – that it’s given her permission to look her genetic, natural self and not what society expects of her (or she thinks society wants her to look).
For anyone in Sydney, I highly recommend Tikvah clinic. They’re expensive, but worth every cent. My daughter is eating some fear foods and has started her periods again. Today our Paed informed us she no longer has low blood pressure and HR, her bloods still have a way to go. But this is progress. It’s been a long and scary time., and I know we’ve still got a long, mental, road ahead of us. But I feel we have turned a corner. This group was the only help we had in the beginning of our journey. As there was just no help as everywhere was full with huge waitlists. So thank you to all those who answered my bazillion questions, recommended all the books and website to stalk. It really does take a village.
We’d love to hear your tips on what helped you.
Drop us a line through our contact form. We’d love to hear from you.
