How the system is failing eating disorder patients

After years of being placed in and out of the eating disorder system, you meet people.

 

You meet patients. You meet them with shy glances in waiting rooms while the receptionist is checking that, yes, you do exist and you are here to stay. You meet them at meal times while you try to focus on the food in front of you and not what everyone else is doing to cope with the whole ordeal. You get distracted by the nervous taps of feet on the ground. You meet at weigh-ins, dressed in hospital gowns. Sometimes you get lucky and the nurse wakes you before anyone else can see the blatant dread on your face. You meet in group therapy where you desperately try to hold back tears when someone hits too close too home. Sometimes it’s too much. Sometimes, after the session, you’ll stay back and cry with the other patient and you will both whisper how you didn’t think anyone else felt that way. It’s bittersweet and you are relieved. So you become friends with them. You stay up late at night until the nurses usher you out of the lounge and you sneak into each others rooms, and hope that the staff don’t notice that you’re both intertwined on the hospital bed, not wanting to be alone. They notice. You go back to bed.

 

You braid each others hair, you laugh, you cry, you support each other and you listen to their stories, their struggles, their hopes in recovery and you begin to notice a pattern in each story. It’s slow at first, the connection you make, and it’s anything but easy. You can’t brush this off. You notice that the system you’ve all been placed in has failed you. That doctors, psychiatrists, registrars, clinics, wards, the dietitians, the physiotherapists, the odd bad nurse who most likely got all of their information from a 60 year old man with a doctorate who hasn’t got a clue what an eating disorder is, have overlooked your illness.

 

One of the hardest parts of recovery is admitting you need help. That’s undeniable. You are giving up a life you have known for far too long because it was safe and it was your way of coping with how gravity seemed to pressing down on you. You think that once you’ve taken a deep breath and confessed what you think is a sin – a betrayal – to your eating disorder, that everything might just fall into place. Sometimes you’re lucky and it will. Most times, you are not. You are misdiagnosed, unheard, told it’s a phase. You are looked up and down while the pathologist, who is drawing your blood to check for what was later revealed as severely low potassium, questions if you really are sick. You are not a skeleton. As if you needed anymore confirmation. You are told you should eat more vegetables, that you should try yoga, to meditate, to sleep eight hours a night, to try something natural and when that doesn’t work you’re sent off with prescription and told to come back in a month when you’re feeling better. You are told time and time again that you’re not sick enough, not thin enough, not ready, not brave, not worthy, not yet. That you have to wait.

 

Then it’s eight months later and you’re worse than ever. You are fighting for your life because the dietitian didn’t explain to you that you can go into re-feeding syndrome from trying to eat “normally” again. That the doctor you’ve been seeing thought you were better because you gained 200 grams in a week and you’re now the spitting image of health. That’s bullshit. You’re dying. Sometimes, you get into hospital out of sheer luck and patience. You honest to God did not believe that you could wait it out. But you did. Sometimes, after the glimmer of hope and then the steady, “no, no, no,” you lose.

 

You, as a reader, should know that it is a fact that anorexia has the highest rate of suicide of any mental illness. You know this now. Hopefully, you now know how abundantly clear it is that something needs to be done for eating disorder sufferers. There needs to be a complete shift in what is currently being done, which is the bare minimum. Individuals with eating disorders need medical attention, but without the proper resources and teams, those numbers of suicide rates are going to continue to grow. There’s no denying that. Experts have spent half of their medical lives gathering the wrong information on how to treat an eating disorder.

 

So let’s make it clear for them: You can be overweight and have an eating disorder. Contrary to popular belief, there is more than one type of eating disorder. You can have a perfectly healthy BMI and still be dying. That’s no secret. Your blood pressure doesn’t have to read as 68 over 85. Blood pressure doesn’t show the fact that your kidneys are about to give out. You do not have to be white and conventionally attractive to have an eating disorder. As much as social media likes to tell us, that’s a lie. You don’t need be an inpatient or outpatient to have an eating disorder. You can come from any racial, social or political background, you can be gay, disabled, transgender or homeless and still have an eating disorder.

 

At the end of the day, you are sick and no one has the right to tell you that you’re not.

 

I don’t want to be frightened everyday that the bravest people I have ever met during my journey didn’t make it. Couldn’t make it. That, for them, there was another way out. I won’t let myself believe that they can be reduced to a statistic because nothing is being done. The knowledge that something can be done to help but isn’t, is painful. This topic is no longer, “hush hush.” Talk about this with your parents, with friends, with peers, with strangers on the train. Share it until the right people see it. Share it until the doctors or psychologists or the prime minister sees it. Show them they should be ashamed for letting this slip through their fingers. Spread the news until these numbers drop. Spread it until there’s more than only 38 beds for individuals with eating disorders in the whole of Australia.

 

I refused to be a statistic on page 15 of the newspaper, shoved in the corner next to a dog wash advert a long time ago. So I fought like hell to be where I am today. I fought the doctors while my mum fought the insurance company. I fought the man on the street who said I needed to eat a burger. I fought the smirk off of my face when he stuttered out an apology. The only apology I need is one to my body. I had to learn that the hard way.

 

It is no lie when people say that recovery is the hardest thing you will ever endure. They also tell you it’s worth it and, god, it is. I learned how to live again. I learned that chewing a pea ten times isn’t going to make a difference. I learned I didn’t really like peas anyway. I learned that bloating is normal and it didn’t mean I had gained 10 kilos over night. I learned how to say no to my eating disorder. I learned how to say no when I was refused any sort of treatment.

 

I pushed for it, with the help of my incredibly brave mother, and I am living, breathing proof that dying isn’t an option. It never should be. So maybe you fight the system that has failed you and you beat them at their own game and in return, you live.