Living with autism and anorexia nervosa – exposing cracks in care
5:53am. I watch the morning sun become brighter through the cracks in my window, just as I watch the sun fade into darkness at night. Nights are lonely. My anxiety rises as the sun drops lower.
Time does not stop. The incessant ticking inside my head is a perpetual reminder of the numbers that exist. These numbers rule my life; I think about these numbers constantly: how long left in an appointment, I have to express what I feel inside within 60 minutes; feeling I am in my 20s only yesterday and waking up to 31 today, thinking where did the time go? Then there is the fear of numbers associated with the food I eat, and the numbers I dread seeing on the scales; these fears dominate and consume my time.
The thoughts are like 10, 15, 20 radios blaring at once, overlapping and barely making sense; they’re the thoughts and voices screaming, taunting whirling inside my head. Some whisper so discreetly that they’re deafening, almost like a Galton’s whistle that only I can hear, made for the minds of those with an eating disorder, trying to train us into the success of distorting our minds, creating body dysmorphia. Some voices are so loud I can’t make sense of what they are yelling. I can’t cover my ears to what goes on inside; so how can I block the voices out? Control? Yes, I need to gain control of everything wrong in my life.
7am medication; I wait for 10am, 2 pm, 6 pm and so on until I take medication for the last time today around 11pm.
I eat more medication than food.
I feel so mentally paralysed with the overwhelming noise within my mind that I sit and stare. That’s if I’m lucky; sometimes the noise gets so loud I can’t help but fight myself and am reduced to punching, hitting, biting and screaming so loud that my voice box feels torn and raw. I get left with tremors like the after-effects of an earthquake within me. I never get time to rebuild before the quake hits again.
I feel so agitated that I want to jump up and run but have no energy, so I lay so still I can feel my body crawling, knowing I can’t run away from what I want to, anorexia nervosa.
I have anorexia nervosa and it is trying to drown me slowly, and I can only tread water for so long without knowing how to swim to safety.
I lay on my back and float in an isolated ocean, pleading and begging for a life raft or a hand to reach down and pull me up, but nobody comes, no matter how loud I plea for help (recovery).
People look for blame, but I don’t
I have suffered with food since I was seven years old. I would go on random food strikes.
I can’t tell you at exactly what point it started or even why.
People look for blame, but I don’t; this monster was inside me since I took my first breath.
That was just the beginning of 31 years’ worth of worry; little did anyone know. I’ve never felt I’ve had a place in this world, no matter the love and care from my family; something inside me holds a lot of pain and suffering, sadness and darkness, trauma and loss.
I could say I don’t know why; in reality, I have reason to feel the way I do from the experiences I’ve been through trying to find my way in this life. Abusive relationships, there have been a few, but I don’t blame anyone.
Why is life-fighting against me so hard to stay on earth? I ask why, what did I do? I am a good person, there are no answers, and it’s unrealistic to keep asking, so I choose to keep fighting for what I deserve.
I know I should show myself the kindness and care that I give others. But I don’t feel worth it; I think I am a burden upon people and feel sorry for anyone who has to be near me and deal with me and my baggage. It weighs me down even at my lowest weight, so I know it weighs them down.
I want to live and have a purpose
Sometimes it’s easier to go through it than to watch it happen to a loved one.
To know I have family fear that one day they will have to take me in and take care of me, and having them say they can’t take me on, hurts and feels like my end will be sooner than it should. I want to live and have a purpose; I don’t want this Illness, and I am doing all I can to escape its clutches.
I have learnt to accept that I’ll never live up to the expectations that some expect, and I can only do what I can and trust that I know the truth inside me.
I have a brilliant and unique mind; looking back on what I can remember and what I am losing because of this illness pains me.
Anorexia nervosa has already killed parts of me while floating through life, wondering what next? Is there something else? Is there a point to that next step? The answer is “Yes.”
How do I recover if I can’t access help in the public health care system due to my diagnosis of autism and eating disorder? My latest relapse is not the first, nor does it look like being the last without intervention and treatment.
With this latest relapse I presented to Emergency, after my doctor advised me if I didn’t, I could die in my sleep; but triage declared me ”medically stable”, at a very low BMI and low pulse rate, and sent me home because “there aren’t enough beds here”.
The ugly truth is many people suffer alone
No one should be overlooked. None of this is what people want to hear, but this is what needs awareness.
The ugly truth about eating disorders is that many people struggle alone. It’s not just a skinny person choosing to miss meals. It’s heartache for anyone close to you; it’s tears, tantrums and diminishing health.
My heart was beautiful, and healthy, and now I have medical issues that feel like someone is reaching inside my chest with their grip getting tighter and tighter around my heart. I experience symptoms of flutters, palpitations and pain, laboured breathing, dizziness, blackouts every time I stand.
I’m losing hair and growing extra on my body to make up for the fact I’m missing body fat and I need to produce a thin, soft layer of insulation to keep me warm, never being able to warm up my body: I have cold hands, cold feet, sore joints and sprains.
I cannot remember how the bruises got there on my once-perfect porcelain skin. The baggy clothes I wear hide the bones that protrude from my thin layer of skin and what’s left of my body fat and muscle. Fatigue and insomnia occur at the same time, and sleep deprivation is enough to make anyone in a normal situation go insane, let alone the deterioration in cognitive functioning.
Why do I think anorexia is the only thing I can do right in life?
Anorexia is about anything but control. We sometimes do this to control the mess around us, but anorexia is a complete loss of control; it’s not beauty or an accomplishment; why is it when I think of myself, anorexia is the only thing I can do right in life?
An unexpected glimpse while walking past a reflection sets me thinking, ”Oh my gosh, she’s so skinny”, I feel sadness, then realise that girl in the reflection is me. That glimpse is gone with a blink of what sanity could have been, and I am back to being a weight I think is too high. Yet hospitals won’t treat me and the health professionals feed my anorexia with comments like, ”You’re not sick enough”, okay, so I am not thin enough? A clinic discriminates against autism and removes me from a two-year waiting list; after getting to third on the top after many admission attempts, I’m sent home.
I fell backwards into this latest relapse. I lost more weight, and my mental health has been declining every day since my latest discharge. I have a doctor looking into two options currently and I’m trying not to hold my breath or hold hope, and that’s sad that I can’t even allow myself to feel hope after two years of non-stop rejection.
Hope is a great survival tool
Hope can help people survive in this world. I am everything to the people who love and support me, I am to myself as well, and this is worth the pain to continue striving to recovery. I can’t sleep, so I read, advocate, and write to raise awareness.
I am creating a blog to bring awareness, to let others walk alongside me in recovery, in a community of love and support. I am here for you; you’re not alone. I report ‘pro ana’ and ‘pro mia’ blogs, understanding that people who participate in these sites are ill, but are poisoning people’s minds and feeding off a dangerous and deadly path.
I am looking at courses to study when I recover. I want to advocate and become an eating disorder recovery coach because then my struggle is not for nothing, and my efforts are for a reason, to help others. Against the static and screaming in my head, declining in my cognitive functioning and pain, I push on.
Imagine me at my best
How many people do this form of fighting with this lack of energy and functioning? Imagine me at my best.
I love to learn despite my daily struggles; even when my brain is functioning at its lowest capacity right now, learning encourages me to continue. Imagine me in recovery. I will shine; all I ask for is a little help in healing from an illness that even those suffering find hard to understand, let alone the health care system which lacks funding and knowledge. We need individualised treatment plans because one size does not fit all.
Thank you for allowing me to express, advocate and fight because many beautiful people like me are slipping through the cracks.
Recovery is possible.