I wish I could sit down, hold your hand, and tell you what is to come. It is August 2020, and our precious child is avoiding food. You are at the beginning of their suffering from an eating disorder, which you will call ED. I know this letter may shock and overwhelm you, so I’ve held off writing until now, but there are things I know, two years on, that may help you. But I’m nervous. I don’t want to dampen your hope…the most important feeling you need to cling to, along the way.
I pray my words will help you navigate the terrible ‘unknowns’, maybe prevent some fumbled words, triggers, and adjust your expectations.
Lower your expectations
Oh, that word ‘expectation’. I’ve realised it has no place in the eating disorder space, but you must start by lowering your expectations – of them and yourself. There is one caveat though: they must eat. Food is the only medicine.
Lower your expectations of how they will react to this beast and how you will. Lower your expectations for your dreams of their future. These may come, but in this moment all you will wish for is for them to 1) survive, 2) be happy and 3) thrive. Not necessarily in that order but number 1 is sadly the most pressing. The one you will fight for. Dreams can wait.
You may seek out others who have walked this rocky path, but their battle – their child – is different. Avoid those who say how quickly they wrested this beast from their child, that recovery comes down to parental willpower, blah, blah, blah. Your battle is your own.
I know that you never expected them to be hospitalised – that was not going to happen to your family. Well, they’ve suffered through 10 admissions. They saved their life and were necessary for that part of this awful battle.
So lower your expectations but maintain your determination. You. Will. Beat. This.
Love conquers all
You love our precious one with all your heart. This love will see you through the times of hurled insults, thrown food and kitchen utensils, and swearing like you’ve never been sworn at before. They have been kidnapped by this beast and when you hear all this venom it is the enemy trying to dominate. But you are a ferocious mumma bear; tougher and stronger than any nasty disorder.
It’s OK that occasionally you will swear back. It probably doesn’t hurt the ‘shitebag’ ED to hear your fighting words! At the same time your empathy will flourish. Your pre-ED empathy would glow with pride at how far you’ve come. Bravo you.
Karina, you probably should have instilled personal boundaries sooner. Because you too will suffer. Especially when you are standing up to ED and copping its fury. You will take it personally (don’t) and you’ll react badly (that’s OK). So please ensure that words or actions that cross your boundaries are not tolerated.
You might notice that things escalate quickly–understatement–so walking away is often the best solution. Remove yourself so you can breathe, cry, walk, cry, breathe, cry. It will de-escalate the situation. Suffice to say if safety is an issue stay nearby.
Oh, that essential word safety. Don’t be afraid to ask for help – from friends, family, the hospital crisis line, 000. You will use them all.
Shout from the rooftop
Perhaps not literally shout, nor climb on the roof, but be bold and speak up. You are fighting for their life. If you are not being heard and you know something is wrong – at the GPs, in Emergency, at school – speak up and don’t stop.
Our child will be accidentally contaminated with gluten in hospital. On more than one occasion. Their disorder made them severely malnourished, and gluten is a huge no-no with coeliac disease. Their severe abdominal symptoms made you speak loud and often.
Remember, other people do care. The medical system tries, but it is overwhelmed. And this is your child. You are the only one that knows them best. Parents are their sole advocate. So, SPEAK UP.
Let go of guilt
I know you have spent many a moment asking yourself questions, regretting past moments, blaming yourself, but please, put the guilt aside. This. Is. Not. Your. Fault. And it’s not theirs either. Moving beyond guilt is bizarrely cathartic. After two years of browbeating you will be in a no-one’s-fault space.
Don’t bottle up your tears. You’ve sobbed until your eyelids are still swollen the following day. You’ve cried at shops, in front of strangers, and your vulnerable child. But what you are doing is showing them and yourself healthy emotions. You are being a good role model. So cry. And toss that guilt..
There’s our friend again, hope. Without it, we humans are a well of despair. If I could teleport you to ‘pre-ED’ I would give you the biggest hug, tell you to surround yourself with other warriors, such as the amazing parents in EDFA, and remind you to never, ever give up hope.
Your darling child gave up on hope – that’s part of why ED took hold. Be their hope. Live each day in hope. Especially on the ‘hopeless’ days. There will be plenty of those. Shout your mantra repeatedly on those days. Tell them every day: ‘the world needs more deep thinkers, sensitive souls, carers, lovers, peacemakers; the world needs more of <name>’.
They are worth it.