Waiting… for doctors to listen or for my heart to stop
Ask me no questions, I will tell you no lies.
I am honest, trustworthy, loyal and fair. However, a part of me lurks in the shadows. A part of me that I try not to release and remain terrified that if seen will expose the ugliness within.
This part of me is present and omnipotent and holds no fear. It has learnt to morph and adapt. It masquerades as my protector, and has gathered the strength to stand in broad daylight and demand to be witnessed and hold the space it feels it has earnt.
I live in this nightmarish fairy tale where the ivory tower holds me prisoner. I spend endless days and nights hoping to be noticed as my heart is silently weeping. I lack the courage to speak out and be seen.
I am unsure if trauma has created a paradigm universe where unseen, unheard and unrecognised black matter seeps into each corner of my soul but I continue to be trapped by my unrealistic belief and desire that life should be fair.
I waken each morning and no longer know who I am. I have taken more than two decades to admit to myself I have an eating disorder, and more years to acknowledge I am not well. My anorexia and I have become one and I no longer recognise my own needs or wants. I’m stuck inside this body and can’t see a way out. I sit in silence, hopeful, yet terrified others believe my facade.
Ask myself no questions, I will tell myself no lies but while I am unable to tell anyone how sick I am, I allow myself a state of denial and the eating disorder wins time and time again.
Ask me no questions, I will tell you no lies. My eating disorder has taught me well.
When I present under doctor’s orders to emergency and am asked, “What has brought you here? Do you feel pain?”, the words “help me” are buried deep within and myeating disorder is so loud I cannot speak over the shame. Ask me, “Have you allowed yourself food today or did you break the eating disorder rule?” Ask me why I won’t sit still and prefer to stand. Or ask if I have my inner critic here with me as well? Then you will hear the truth.
I come to the hospital, I want to be seen and heard, but the hospital system sides with the relentless voice in my head and despite the eating disorder’s best efforts to destroy my body, it is not broken. The medical professionals do clinical tests and send me home, giving me the green light to continue the path of self-destruction I cannot seem to stop. What is required to take this seriously? Do I have to die?
“I’m screaming and you can’t hear me. I need some help.
What does it take to understand. I’m starving, I’m tired, I don’t want to live.
My body is taking space and my mind is shrinking but despite this, you say, ‘Go home’.”
The public health system has not been taught to care. There are not enough resources, there is not enough education and not enough time. My name is on the private hospital eating disorder unit waiting lists but there is a minimum delay of three months to be assessed for a bed. The shortage of help is astounding given anorexia has the highest death rate of all mental illnesses and the disease is so toxic that one in every five people with anorexia end up dying by suicide (Smink, van Hoeken & Hoek, 2012).
“Hold my hand, don’t let go. When you do, I fall away. It’s not that I’m trying to leave your side. The slide is so slippery, I can’t hold on. Even if I want to, the lure for control is too strong.”
Home and out of control
Now, I am home, and remain out of control, yet my only choice is to wait. Wait for a bed in a private hospital or for my heart to stop. A small, wounded part of me is calling out, yet it is so deep and buried I do not think anyone can hear me. I spend time in therapy trying to believe my mind matters, that I matter, despite the health system confirming my fear this is not true.
“Don’t hate me, I need you, I know I’m making it hard.
I’m still in here, I’m just hard to see.
Stop judging me. I know I’m a pain. Stop hating me, I’m not difficult – I’m trying to breathe.”
As the days go by, the fight begins to rise, and it is no longer just with me. Everyone around me knows what is going on but I won’t let them close enough to ask the questions, after all, I cannot lie.
“I want you to see me but don’t look at me while you do.
Why don’t you understand? There is no way to explain this, let me be alone.”
And so the push/pull relationship of my anorexia increases and my mind is unwell. Days are full of mixed messages that my eating disorder grabs and will not allow my honest desperation an inch to be heard.
While it is true that if you ask me no questions, I will tell you no lies, you need to be prepared that my reality is so dangerous that should you not ask properly, there is every chance when I tell the truth, a white lie to protect your feelings may be the start of something new.
While the hospital and clinic beds remain full, with the trauma of my past, I know there is little point in hope. My head says I must do this alone. My boundaries become blurred while I fight for survival and if you ask, “Have you eaten?”, I move swiftly from white lies to lies of omission. I cannot fight with you as well as the noise in my head.
“Fight with me
Leave me alone.”
I know I need to stand on my own, but I don’t want this to be true. I need to be loved; I need to be held. I’m a person, I’m here, and yes, while I know this is all in my head, I am in pain and I don’t want to be left alone.
“I don’t need you!
Please don’t go. I’m lost inside here.
I thought you understood that and wouldn’t leave me.”
If you think I can’t see you watching, you must be crazy as well. I no longer want to answer your questions but when you keep asking, you give me no choice but to twist the truth, a lie of commission and now my truth is deceptive as I have always been honest, trustworthy, loyal and fair.
Ask me questions, I will tell you lies.
I thought, I was doing all I could, but it seems my fairy tale thinking is encased in denial. The waiting game, for recovery to come and save me, is no longer a game I can afford to play.
In the past six years I have been admitted as an inpatient nine times into different inpatient units and have continued to hold down a full-time job.
Once admitted, the doctors describe me in a manner to make anyone proud. I am compliant, I am friendly, I am amenable and willing to try. I want to be “better,” I want to be well; but there are complex layers and as an articulate, intelligent, well presented, well-spoken “forty something” woman, I am hiding in plain sight.
“While staff see me as compliant, my eating disorder is not. While the doctors see me as friendly, my eating disorder is hostile and while everyone in the eating disorder unit sees me as amenable, my eating disorder is manipulative and defiant.”
No one checks my bags carefully for contraband and medication and self-harm instruments are hidden well. It is easy to hide food at the table or walk a little further when no one is watching, after all, I am an articulate, intelligent, well presented, well-spoken “forty something” woman who wants to be well. In each admission I have never stayed past the 30-day mark as this is when my weight starts to grow. My brain has yet to start healing, but given the wait list for others, it seems fair that I go.
Home again, the cycle resumes, with no impact made on my world. It is time to make a difference and even if simple acceptance is the place to start, I want to face life with the knowledge I am doing the best I can, in this moment, with the resources available to me. Ask me no questions, I will tell you no lies, but be prepared you may not like what I have to say. I am unable to fight anorexia and continue to be polite, I am not able to be honest with the pain and continue the perception of compliance as the two do not go hand in hand. To embark on changes from within while I wait, if I choose the path of recovery, you can ask me any question, but I will no longer lie.
Take home messages on understanding someone with anorexia
- It is not enough to simply acknowledge we have anorexia. It needs to be brought out of the shadows and shared with those we trust before change can occur.
- Sick is more than you can see.
- We can need help and support while we cannot tolerate help and support.
- While we ask for support, and continue to be sent home, nothing will change unless we are willing to be honest about what we hide. Health professionals need to be educated to ask the right questions in the right way to get the honest answers.
For help with an eating disorder, go to: The Butterfly Foundation
For information about eating disorders click here: National Eating Disorders Association
Thank you, Karen, for writing and speaking “my own” words. I am 60, a mother of 4, a career that brought me what I “thought” would fulfill me only to find I am empty still. The companionship of anorexia has been with me for 48 years. It has guided me through many challenges and struggles….and even through some celebrations. I am so very tired now. My body is tired, my brain is tired. My companion remains to provide me with more guidance. The waitlists are long and, well, most people need it more than me. So when I reach the top, I often decline. When my physical body, damaged from so many years of denial, finally says “enough”, my companion tells me it’s overreacting…..I am REALLY tired. So thank you, dear Karen, for expressing what I don’t….I wish you peace, much love, and a at least a glimmer of hope. I hear you.
I was drawn in by the words and drawn in by your honesty. I heard every word, and l ask no questions. The answers are there very clear and plain to see. The questions do not matter because it is written so well and so deeply and so uniquely that there is no doubt of the truth of what l have been through and what you are currently going through. You tell no lies at all you tell the truth of exactly how it is and thank you for being a voice for others in such an honest touching way….all speaking as one voice for the times when the silence holds us back and the fear of the consequences.. improvement to all fascilities needs to happen especially in the public system. Having been through both, l would like to go back and tell them everything they did wrong and how they could have so easily made it better. Thank you so much for sharing.
— from another Karyn
This means so much. Thank your for sharing. Karen, can you write a column about how health care professionals and parents can ask the right questions in the right way? Thx
Hi Alex, Thank you for your excellent suggestion. The Diary Healer will invite Karen to write a post on ‘the right questions to ask’. Perhaps you have some suggestions from experience, yourself? If so, I encourage you to write to me via email: firstname.lastname@example.org
Warmly, June Alexander (founder and co-editor)