Dying but not sick enough to have a hospital bed

If only an eating disorder (ED) could show up on a scan.

What a disgrace our public health sector is in Australia. I say “our” as it could be you, your mother, sister, or friend instead of me.

My mother always said, “Do not air your dirty laundry to others,” but now I am ignoring this rule, because writing is the only way to try to quiet this ED voice in my head. I see my therapist, dietician, psychiatrist, mentor, and GP regularly and share my darkest thoughts.

After a very hard few weeks, off the back of a very hard year, I received a call first thingFriday morning to see my GP who was adamant, in consultation with my entire treatment team, that a hospital admission was not negotiable. In fact, the GP said if I did not head right in, they would legally schedule me as a patient as they did not believe I was thinking clearly enough to make the healthy choice for myself. They have said this before, but in this moment, I knew they were serious. I knew they were all fighting to keep me alive and feared time was running out.

Despite ED screaming not to do so, I told my boss I would work from hospital for the next week and yes, this meant I would miss critical days in the office, but for once I had to put myself first. At 9am, I took an Uber directly to the hospital and, with the letter from the GP, was given a bed in the Emergency Room (ER) without delay.

Unfortunately, this is where the care of my ED all stopped, and for three days I have been left begging and ashamed to be seen.

The nurse doing the electrocardiogram (ECG), chats to me while doing the test, looks at my chart in surprise and says, “You are not thin enough to have anorexia”. She keeps up the small talk, but I can no longer hear her as by now, I have spent more than four hours waiting invisibly (each hour feels like I become more invisible) for assistance, and I no longer have the mental or emotional capacity to reply.

The shame and embarrassment when my bloods and ECG tests return normal results (although on the low side of normal) has my ED calling out.

For once, I have been taking my supplements at home as prescribed and I have fronted to Emergency before the ambulance needs to be called. But now I am told I do not fit the new criteria of an ED admission. I am told, “You have good community support in place, so you should leave and access these supports instead”.

How fortunate for me my heart continues to be fine, how blessed I am that my body continues to function but how long can that last? How long can I stay upright at home before an ambulance is called?

My team of community-based therapists who are trying to save me, who directed me here, are the ones left to clean up the mess as now my ED voice has confirmation: I am not sick enough to be here.

The hospital-based doctor finally notices the scratches that cover my arms and hands and ask if they are self-harm. Simply nodding yes to her, she walks away without a word.

I want to go home; my head is screaming at me to pull out the canula and leave. I did not want to come here; I knew they would not help. The ER doctors focus on what they can see, they do not listen to me, and my illness hides in the dark.

Our emergency health system is focused on scan it, patch it, and send it home. If the ED scanned as a lesion, a cell or tumor, perhaps it would be accepted as real.

Unless the doctors can see it, there is nothing to do. Anorexia thrives in the shadows and grows in the dark and what better place to grow than a system that confirms the message, “Go home, you are not medically unstable”. All I heard was, “Go”.

The health system is set up so they must send me home until I collapse and only then, perhaps they can help. In today’s world, we know mental illness is real, yet the government will not acknowledge this illness until the body has broken as far as the mind.

I wonder with training, if a doctor asked the correct questions, pulled out their ophthalmoscope and shone their light allowing the ED to be seen, how much easier the system would manage and we would manage, when we do not have to explain the invisible diagnosis and beg to be seen.

I went into hospital as my specialists, concerned with my ED history, have evidence that after a relapse, when I start eating, I am a high risk of heart attack and refeeding syndrome, both of which mean I will end up in an ambulance (if I am lucky), or dead.

I am so tired; I do not have the energy to fight, and I know if I go home, I will have to come back. I ask the ER doctor to call my GP and I ask my adult daughter at work, to do the same. My GP battles with the hospital staff and eventually persuades the gastroenterology team to assess me as I have had an upset stomach every time I eat over the past few weeks.

It is now 3pm Friday. I have had no food or water all day (my ED is having a laugh) and even I am stunned at having to beg for the help my ED does not want, but I know I need. I feel mortified, humiliated, and demeaned. Welcome to our health system.

One CT scan later and it seems that my bowels are full, and hospital staff agree to admit me under this item and “let me” spend the weekend here.

They admit me under the nearest “symptom” they can find and each time, the nurses check my blood pressure and heart rate, they ask if I am in pain. I did not arrive with pain, so I am unsure of the answer they want. I have not been admitted for the pain inside my mind.

As they give me litres of a laxative drink to clear my gut, the admitting doctor jokes with me about how much weight I will lose while I am here.

I have an incredible team of community-based professionals who are still on the phone to me at 9pm on Friday night and have come together to understand what has been happening all day and decide the next “best step”.

My dietician has explained that constipation is a sign of severe malnutrition and the diarrhoea is essentially the stage before more serious complications. My eating has become severely restricted over recent months and it is apparently unusual that I have not shown any other signs of malnutrition.

The nurses are working hard to smile and be kind, but they are also unsure of why I am here. When I am taken to the ward, I ask specifically to see the dietetics and psych team but am told they cannot see me until next week.

I promise myself I will stay here over the weekend, despite feeling I am undeserving and am taking a bed from someone who needs it. I am here for the weekend battling my mind and the food while no one around me has a clue.

I am in the cardiac ward and general medicine ward so should anything happen if I try to eat this weekend, I am “safe”. My team are on standby with their phones and ask me to be in contact if I have questions or concerns. They are asking me to stay put in readiness for when the wheels of care can start to turn on Monday.

Now, it is Sunday afternoon and I have not seen an appropriate doctor, for three days so far; I have not seen a dietitian, for three days so far; I have not seen a psychiatrist, for three days so far; I have not eaten anything more than soup, and no one knows.

No one comes to see me as there is nothing to see. If they did, they would see the meals they place in front of me are uneaten and my ED is growing stronger by the day.

I know it is easy to say, “Just eat”. If it was that easy, I would be at home with my children, with my husband and not in the public hospital system in a shared room, peeling walls, and being ignored.

I am one of the fortunate ones. I have a home, a family. I have an income; a job and I can afford private health insurance. However, none of that can help me with the systems in place.

A private clinic has wait lists, but I am not sure my body can wait months for the care I need. Even if a bed became available there, I would begin to eat and my past lived experience shows, my electrolytes would drop, and I would be become medically unstable, at risk of heart failure and other medical consequences, forcing the private clinic to send me to the public ward. Yes, they would send me to this public hospital – where staff cannot help me today as I am not sick according to the latest Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) criteria.

I am too sick to use my privilege and not sick enough to be helped for free.

About Karen Louise

Growing up, all I ever wanted was a large family and the white picket fence dream. Born and bred in Australia, I work full time in a high-profile job and have four children. As a high functioning professional and mother with a diagnosis of a severe and enduring eating disorder, life has thrown more challenges my way than seems fair. As I reach a crossroad in my life, I realise I want to live authentically, with purpose. Writing allows me to give voice to the battles that lie within in the hope my skills and hard-won experience will help move me in a direction of Eating Disorder and Trauma recovery and allow me to create changes in the eating disorder advocacy and eating disorder education world.

All articles by Karen Louise

3 Responses

  1. Sonya Dorries says:

    Thank you for sharing this painful story.
    I have battled for 40 years and have given up on treatment for many reasons. None of them because I don’t want help.
    I feel invisible. I feel scared my body will give out. Now it’s up to me to pull myself through this. Easier said than done. I want to live and live with passion and be around to see my kids experience new adventures in life.

    • Dear Sonya, hold onto hope! Continue to seek the treatment that is right for you! You deserve a full life! I battled for 44 years and now I am free – free to see my children grow up and free to embrace the joy of being in the moment with my grandchildren. See my memoir: https://thediaryhealer.com/books/a-girl-called-tim/ Yes, hard work is entailed in reconnecting with our healthy self and developing new, healthy-self thoughts and behaviours, but the reward is priceless – the reward is freedom. I’m sure that Karen will identify with your pain and frustrations, also, and will respond. With love and best wishes for your healing, June (editor of The Diary Healer)

    • Dear Sonya,
      I hear and feel your pain. I have spent years trying to persuade myself and others that I will be fine but my body has caught up with me and now I am asking for help, it is almost impossible to access.
      My ED tells me that it is OK to die and my children are my reminder why I need to keep trying. I am sure it is the same for you.
      The only way I have hope of getting better is to talk to others who are coping with the same heartache, try to trust friends and family and find a team of specialists who will believe in me until I can.
      This is the most awful battle I have had to fight and writing this story was my way of not hiding the pain and shame. Sending you positive thoughts and hope until you can find your own.
      Karen

Leave a Reply