By Isabella Sumsion
When I first contacted FEAST, I thought I was going to use this opportunity to write down the details of my eight-year battle with anorexia and orthorexia. But I soon realised that sadly, you have probably heard the replicates of my story over and over. Instead, I am going to use the next few paragraphs to tell you what I wish someone had told my parents, and that might mean that someone else’s battle doesn’t last as long as mine had to.
From personal experience, I can only speak about anorexia, orthorexia and bulimia; but I hope that in general, most of this content will be applicable to all forms of eating disorders.
THE TIME IS NOW…
Ever heard the phrase it’s better to be safe than sorry? When it comes to eating disorders, the saying couldn’t be more appropriate. If you have a child who has given you any reason to consider that they may have an eating disorder, it’s time to take action. Don’t wait till they’ve lost a scary amount of weight, till they are so sick that there is no doubt. If you turn out to be wrong, you can be happy, but with 1.25 million people in the UK having an eating disorder, affecting younger and younger people, I’d take the risk of being wrong. Because if you’re right, acting fast could save someone years of their life. Nine out of ten times it will be aggressively denied. The disorder will probably do a very good job of convincing you that you are being paranoid, that it’s a question of just getting a bit healthier, they just really love celery, are eating loads at school, or whatever else the eating disorder can conjure up to throw you off the scent.
But if there is nothing wrong, then there is nothing to hide, right? And there would be no reason to be scared of seeing a professional. There comes a point when an eating disorder has completely taken someone hostage, that hospitalization is the only option, and the window for home treatment has closed. This is not the time for hanging around–please don’t wait until it’s too late.
THE EATING DISORDER IS NOT YOUR CHILD
Eating disorders are complicated. It’s as though there’s a third, uninvited, person in your relationship, piggy in the middle. Deciphering what is the eating disorder talking and what is your child can be tricky, not only for you, but for the sufferer too! It is crucial from the outset to make a clear distinction and know that the eating disorder is a separate entity to your child. The eating disorder uses our voices to scream and our bodies to kick, but know that the eating disorder is one thing and your child another. This helps to explain three important concepts:
1. BEING BAD COP
When it comes to food, eating, cooking, exercising, meal planning, calorie counting, weighing (the list is long) and all things that the disorder wants to control, you have to be bad cop. No negotiations or compromises. Everyone’s watched a blockbuster movie where the police “don’t negotiate with the terrorist” in a hostage situation.
Well in this situation, the hostage is your child, the eating disorder is the terrorist, and the best thing you can do, no matter how hard, is to stay strong, strict, not-budging and not to negotiate.
*A word from the wise, for some people it might be helpful to be told that “this is your eating disorder talking”, for some people it’s the most frustrating thing in the whole world, feeling like nobody is listening to how you are feeling. So sometimes thinking it but not saying it is the best course of action. Personally, I think that the phrase is more helpful for the parent or carer, than for the sufferer. If all it took for someone to recover was to be that it’s their eating disorder talking, you wouldn’t be reading this post today.
2. BE SUSPICIOUS
Eating disorders are clever. They are sneaky, manipulative, and dishonest. Don’t trust them. Unfortunately, this means you can’t trust your child, when they absolutely promise that they ate earlier, they won’t do star-jumps in their room when their alone, that they will stick to their meal plan at school and not throw their lunch in the bin. There is no battle too small for anorexia to want to win, no feat too tiny to be considered a triumph for the disorder. I remember in hospital my eating disorder telling me the best thing I could do was hide bits of food between my gums and my lips, under my nails and in my pockets. Telling me I had won as I sat there with cheeks puffed like a hamster, with greasy fingers and dressing gown pockets full of soggy bran flakes… and that was after I had admitted I was ill and convinced myself and everyone else that I was determined to get better. That’s the thing about eating disorders, even if you desperately want to be better, and have a normal life, you are so gripped by the disorder that it can take five rides on the recovery/relapse roller coaster before being able to finally accept that you will have to give up all of the eating disorder. So, if someone has told you they want to get better, it’s not smooth rolling from there on and you need to be vigilant, to be able to catch them when they tumble; and, as severe as it sounds, scare them back on track when the inevitable hiccups come along.
3. BE PREPARED TO BE HATED
The eating disorder is NOT going to give up without a fight. Screaming, shouting, crying, saying horrible, horrible things, guilt tripping, begging… every trick in the book will be used. One of my biggest regrets to this day is the awful way anorexia made me treat my parents. But all I can say is that as far as possible try to remember that this is the eating disorder and not your child. It will be tough, but if you can keep a guard up and not let the words hurt you, you can stay strong, it will be worth it in the end in terms of full recovery. Because if the eating disorder hates you, you are doing something right.
When it comes to these difficult confrontational situations, it can be useful to be the nurse, not the nurturer. If it were your job to be looking after a patient, you would have distance and not the emotional attachment that comes with being a parent. It can be helpful to adopt the mind-set that eating disorder related stuff is kept in a box, and you don’t let stuff out of that box invade other parts of your life and damage your relationships. Be united. Anorexia forced a divide between me and my mum. I spoke only to my dad, letting only him cook for me, and the disorder pushed my mum away.
My relationship with my mum has taken longer to heal than my relationship with food and my body. Do everything in your power not to let that happen.
Present a strong united front to the eating disorder, one united army is the strongest. Outside of eating, do things together that nourish your relationship. Find things you love doing together, that let you laugh and bond and love each other. Whether its crosswords, an addictive TV series, jigsaws, reading together, anything – find something to bring you together when the eating disorder is trying to drive you apart.
CHORES HAVE TO BE DONE
After many failed attempts at recovery, only to be pulled back under, the way I finally ate my way free, was to take on the ‘job’ of eating. Perfectionism and high achievement are incredibly common in eating disorder sufferers. I had to flip eating from the emotional realm, to a chore that had to be ‘achieved’ and ticked off my to-do list. That’s the thing about perfectionists, we love a to-do list.
Typically, the disorder will use this trait to push someone to the brink, but you can use the same trait against the eating disorder. At the start of recovery, eating wasn’t for pleasure. It was a chore that had to be done, like homework. To-do lists, weekly plans, goal sheets, whatever works, use it.
A prescribed ‘medication’ meal plan from my therapist gave me permission to eat and feel like I was doing the right thing. I found this a really helpful approach to kick-start my recovery. Whatever form was easiest to get energy in, that was how it happened, as long as it meant I got the job done. Sometimes that meant 5 spoons of peanut butter, or a blended fat packed smoothie, as long as the calories were going in.
This is by no means a sustainable way to live, but was for me an effective initial step in restoring some of the damage to my body and feeding my brain, allowing me to see things a little clearer and loosen anorexia’s grip slightly. Slowly but surely, little by little, I increased my energy intake, my menu variety, my weight, and ultimately my happiness. After 7 eating disorder controlled years and 4 inpatient admissions, it took a year of ticking off those chores, even when I had given-up hope and it felt like the hardest thing in the world, from my first meeting with my private therapist to where I am now. Weight restored, happy and a food lover!
Which leads to my final thing I have to say. Never, ever, ever, EVER give up hope.
If you’re struggling or you are watching someone struggling, it can seem like things will never change, that you’re stuck in a nightmare and there’s no way out. I spent most of that final year of recovery doubting myself, feeling like what I was aiming for was impossible, and that I would be stuck in limbo forever (my therapist and parents can vouch for the countless times I phoned them crying and saying that it was impossible).
You will have heard this before – it’s not a smooth ride. There will be bumps in the roads, ups and downs, and probably a lot more downs. But never settle for limbo, never think this is okay, we can survive here. Merely existing is not living. And living is what life is for!
After 4 inpatient admissions, 2 mental act detentions, force-feeding, and 14 different psychiatrists, my adult specialist team discharged me because they didn’t see me making progress to warrant further help. My psychiatrist told me I would still be anorexic at 40. And my exhausted family couldn’t challenge me anymore.
But they didn’t give up. My dad got in touch with a private eating disorder specialist. With the help of this incredible woman, and a lot of determination on mine and my family’s part, we proved the doubters wrong. We WON. The trophy? A full recovery, and a chance to live my life to the fullest.
It takes strength, determination, courage, hard work, professionals, family and friends, and it’s probably the hardest thing you will ever have to do, but I can promise with all my heart, recovery is worth every tear, argument and hard day.
It is possible, but if my family had given up hope, if my therapist didn’t have confidence, I wouldn’t be writing this today, wanting to finish editing so that I can eat pizza with my family and laugh till my stomach hurts.