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What I Wish I’d Known At The Start

By Becky

Since my daughter was diagnosed with an Eating Disorder, I have become a sponge for all information related to them. Like so many parents who find themselves in this bewildering situation, I have spent hours upon hours reading books, listening to podcasts, watching YouTube presentations, reading threads on F.E.A.S.T. and Beat and any other forum going. They are such hideous, cruel illnesses and we need all the help we can get in supporting our young people through them. I know that what I have learnt is just the tip of a massive, complex iceberg. I don’t even understand a lot of what I’ve read; neurology and genetics are not really my strong suit! However, what I do know is that there are some things I wish I’d understood at the start. It might’ve made our journey a little easier and I hope that sharing them might help a little with yours. Here they are:

  1. Feeding your loved one will be one of the hardest things you ever do: you will be tested daily as you take responsibility for battling the Eating Disorder.  3 meals and 3 snacks, day in day out, week in week out, month in month out. Maybe even year in year out.  This is a grueling regime and there will be times when you think it will break you.
  2. There is no quick fix for an Eating Disorder: you are in this for the long haul and the sooner you understand that the better. Take the small wins; every forkful of food is a step closer to recovery.
  3. Self-Care matters: look after yourself through this traumatic time. Confide in good friends, take long walks, read accounts of others experience, sleep, do whatever you can to fill your own cup. You will need it. You are not alone with this, take all the support and help offered.
  4. Physical symptoms of an Eating Disorder are many, varied and terrifying: listen to your medical team and follow their advice. At the start of my daughter’s treatment I had no idea that heart problems were a symptom of Eating Disorders. She had a resting heartbeat of 41 and I naively thought that this just ‘ran in the family’. The more I read the more I realised the perilous situation she was actually in. Listen to your medical team, they know what they are doing.
  5. This is not your fault: self-flagellation is irrelevant and unhelpful. Not to mention just plain wrong. Nothing you did as a parent caused this so stop beating yourself up. Show yourself some compassion.
  6. This is not your child’s fault: they did not choose to let this bully into their lives. Try and maintain compassion for your child at all times. I appreciate that this is not easy when food is being thrown at you and the insults rain down. If you’re about to lose the plot, leave the room until you feel calm enough to return with compassion. Read up on distress tolerance and use the tools it gives you.
  7. Food is the medicine: Eating Disorders take hold of the brain when weight drops below a certain threshold. This can happen to anyone who loses weight for any reason (google the enlightening and fascinating Minnesota Starvation study). The only treatment for this starved brain is food. Psychiatric/behavioural help is not even a possibility until the brain is functioning normally again and the ONLY way to achieve this is through re-feeding/weight restoration. It took me a long time to understand this, I could not understand why my daughter wasn’t being offered psychiatric help initially.
  8. The Eating Disorder is a master manipulator: your child will behave in ways you do not even recognise. This is because their brain is taken over by mental illness. Remember, the child you have known and loved since the day they were born is still in there and you WILL get them back.
  9. Sometimes saying nothing is best: in the silence you will watch your young person cry and suffer but they will know you are there for them and eventually they will pick up the fork and eat something and their journey to recovery will begin.

Remind yourself of all of the above on a regular basis and keep going, one day at a time. You can do this.



  1. Susie

    Such good advice. We are out of that “living hell”, but that mister stil scares me. We are 5 years out of diagnosis at age 13. It took a year to feel hopeful and by 17 mo, she ate on her own. Hang in there parents that are in this fight.

  2. Lori

    Thank God for the recovery process and the support we were able to acquire. It has been two years now since diagnosis and admission to treatment. While there is a level of confidence in the recovered mind of my daughter, I am constantly vigilant for the subtle queues of the devilish ED. Does that ever go away?
    Parents are the key to stamping out this ugly, destructive disease – you can do this.
    Enjoyed the article – thank you.

    • Priya

      It’s more challenging once your child is an adult and out of home. Treatment team can only share limited information. When my daughter was home it was a difficult task to feed and monitor but her electrolytes remained in order. Ever since she left home it’s been a roller coaster ride. Sometimes she shows signs of recovery while other times she seems to be struggling a lot. I feel so helpless because she doesn’t want to come home as she knows that home means regular eating and monitoring to some extent. Her ED resists me the most and the feedback she gives her treatment team is that going home is stressful and now the treatment team is siding with her and are keeping her in PHP. She uses my help only when she is pushed from all sides else she pushes me away. Sometimes I feel that I don’t know my child anymore. This whole thing is so isolating and frustrating. I want to be of help but I’m pushed away – she is losing weight again and I’m unable to do anything.

  3. Joe

    Well written an helpfull article.

    Apreciate the very valuable experience and knowledge shared.

    Will definitely help us in this journey as parents of a daughter with Ed.


  4. Molly Saunders

    I am currently in the hospital with my daughter for a second time. She is in ICU and her vitals are worse then the first time! Thanks for this great article.

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