Living with autism and anorexia nervosa – exposing cracks in care
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.
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Dear Sarah, today I see my psychiatrist. We will talk. We will catch up. We will laugh, then we will hit the nitty gritty and I will cry. I hear every word you say, sweet cherub. As June says, we have a silent language only those who have been through an eating disorder or are going through it or are fighting on despite of it know this language. We know the good news and that is that people care and there are unique places to go, for help, but when at home alone, I know, it is constantly there. I also relate to the spectrum wherever we are on that line. I am no expert except for what l have read and experienced and learnt through my young grandson, asking, “Nana would you like to hold my blue tak?” The sad part is l was happy to take it, I squeezed his hand in the way he allowed me to and said “thank you so much”. He understood. I want you to know that time does not stand still, the clock keeps ticking, and if you hang into hope and reach out for help the journey will begin to flow a little gentler. Your pain will surface when you eat, but keep eating and don’t give up. Food is the smallest part of it even though I know it is the everyday overwhelming part of it when you are underweight, so is your brain. Feed your brain with support. I remember once someone told the monster in my head to “LEAVE HER ALONE!” We had been talking about what anorexia is helpful for and how it is not. The column for the bad was very long, so cruel, so sad, so everything. My psychiatrist was ANGRY for me and for all those suffering and his words were powerful, an eye opener. The eating disorder is not your friend; it is a liar and a monster; and wants you dead. Don’t give up sweet little fluffy duckling, I will be praying for you and you will find your self again. With much love I write this as your experience is similar to my own. Today I have everything within me to be okay, and so do you. Keep taking tiny baby steps in reaching out for help. Good on you for writing your story, that’s courage xo
Dear Karyn,
Thank you for your kind words, support and for sharing your struggles with me. I am so glad that you have a psychologist you feel comfortable with That you can laugh and cry with; everyone needs support.
Together we can make those silent words louder in time.
The knowledge that so many souls struggle with ED, ASD and more gave me the courage to speak up for those who need help. I needed to trust in myself to show my vulnerability and rawness and accept the good and bad that may come along with using my love of writing with others who may need it. I hope people can replace my diagnosis with others to help them, too; many forms of Mental Health can have these challenges. Unfortunately, there is just so few resources in Eating Disorders, as we all well know. I hope you know that even when you’re at home alone, in your darkest, you can remember that there are amazing Advocates like June, who have brought light to help people who feel alone, go online, write, call someone and know your worth. The misconception is that people on the spectrum are stigmatised negatively; in reality, though we may lack the ability to communicate verbally, that doesn’t mean we don’t have other ways. We also can have fantastic intuition, especially loved ones. You learn a new form of bonding, and it is beautiful.
Time is a notion of the event’s when to start and when to stop, repeat, when you have no start and stop it is continuous and can feel as though you’re in limbo; life never stops, though. People can stop, but time does not. I wanted to let people know that you are worth every minute of the day and remember to keep trying and never give up. The deep-rooted problem isn’t what’s on your plate, scales I agree, it’s just the stepping stone, as my dad says ”small steps” we will get there. I want to feed my brain, it deserves it, I deserve it, we all do. The disorder is not your friend, and it’s the unfortunate need for control, we can’t control everything in life, and I am only just learning what is within my circle of control. Learning my circle helps me narrow things down and be more at ease that sometimes I can only control how I respond. Thank you for taking the time to read my story. I truly wish you well and all the best. Sarah 🙂
Beautifully written piece of writing. It gave me a glimpse through the cracks of what Sarah is going through. Although I will never know the pain of having an eating disorder a picture was really painted. I hope strength never leaves and help is found.
Dear dear Sarah.
I know you struggle to see what I see. Your words are so profound.
Your writing skills are prolific and raw and oh so honest.
You will keep fighting as that is who you are. You will overcome this dreadful illness- keep fighting.
If anyone can get to the masses to understand that there needs to be specific funding for anorexia nervosa it is you. You are above intelligent and you have amazing ability with your honesty and passion to attract an vast and broad audience. Never give up. Xx
Thank you Barb ❤️
Thank you Jesse ❤️