Home is where eating disorder healing will happen

To eat and be placed in a holding yard is neither helpful, effective nor holistic when trying to recover from an eating disorder (ED). While hospital is useful and often necessary, our health system is like a bucket full of water. One that has so many holes that it is too easy to quietly slip through one of these holes and escape.
My repeated experiences of hospital and intensive inpatient care has been fraught with contention that has seen battles with my treatment team and my mind.
My ED is so encompassing, when in its depth, it is difficult to understand it has nothing to do with food.
Two types of care are available when I need hospitalization, which I call the point of no return. Public and private care are both a luxury I can manage yet neither have provided the magic answer that is desired.
Only when my body has started to give in, am I admitted into public care. My ED mind is as strong as ever but signs of pressure being placed on my heart or blood results showing electrolyte imbalance becomes the panic button my treatment team need to remove all choice from me. The irony is that at this stage, my ED is so strong it has me convinced I am “fine”.
To walk into a public ward with a letter from the GP ensures I move quickly through triage. Here is where the action stops and takes ED’s side.
As a people-pleaser, I will not walk out. However, the staff are busy with “real” patient care that takes their time. The injuries of the ED are internal at this stage and doctors and nurses in the emergency department cannot see them. To see the damage takes time, commitment and trust built through rapport and this is not the emergency they are trained to tackle.

An eating disorder is an illness of the mind, and our bodies are caught in the fallout

An ED is an illness of the mind, and our bodies are caught in the fallout. With this in mind, a hospital ward is geared to patch and replace and there is no option for this when dealing with the mind.As they insert a drip in my arm and take bloods, I am left to sit with my thoughts. The ED makes massive gains in this time as it sees people in dire need. Somewhere from the depth of myself, I commit to staying for my treatment team and the desire to be well, yet it does not occur to me that I am one heartbeat away from the same treatment as the man next to me who has had a heart attack and the doctors are working to revive. From here I am faced with choice A or B however the truth is, I have no choice. The doctors will take their time to return with my results and, based on these figures, representing one moment in time, will either send me home or ship me up to a ward.
Choice A is home to the same routines with the same rigid rules in place. Choice B is to be admitted to a ward where my vitals will be monitored and the moment these stabilize, revert to Choice A. Back home and the prognosis is no better and the eating disorder has had a massive win. I am certain my journey to recovery has been based on 98 per cent people-pleasing and the desire to hope my team has the answers I am chasing. The missing 2 per cent has been hiding away, yet somehow, I manage to be aware I need to back up and continue with care. Private care is slightly corrupt as only the fortunate can find a place. With a system that is overloaded and the patients, by nature, are resistant to care, private facilities have become a revolving door for many.

If I was truly sick, they would find me a bed

The number of times I have found the courage to call, I am placed on a waitlist and stay at home with huge relief. Here, the eating disorder has gained another win if I was truly sick, they would find me a bed. The small percent of my healthy mind cannot fight the thoughts that I have been turned away and am unwanted. The waitlist is extensive and during this time I stay home, with some days better than others. My bloods stay stable, and the ED voice has taken the hint and knows to stay quiet when the clinic calls, and we delay the offer of a bed.
While sitting on the waitlist, my ED has created a list of why. My rational mind is teaming up with my eating disorder as I am now in panic mode. Together they have created a list of logical reasons why I can manage at home this time and by the time the bed is offered, I am sure the program will not help in any way.
With hindsight, I can see how manipulative ED is, as I have never managed to conquer the challenge of eating meals and snacks consistently at home. This time will be different, I know what I need to do. Try, try and try again, is a trait to be commended however not when it is keeping me separated from care. I suspect accepting limitations acknowledging the severity of what anorexia is doing to me, may be a heathier move.

I am pathetic, a princess, and vain

I have spent many hours chastising myself, I am pathetic, a princess, and vain. This is not how I think of myself without the ED voice, yet these so-called elements of my personality accompany me to treatment. I know the cycle when I become an inpatient at a private clinic. I am adept at playing the system without even being aware I am doing so and the more time I spend there, the more tricks I learn from others.
For me, the journey to admit I am unwell has only been possible with the persistence of my team as they work slowly and respectfully and although it takes time, I start to trust them. Perhaps my eating disorder is particularly strong, but the work I do in session does not seem to last between visits.
The most heartbreaking conversation that has resonated with me over the years is one with a therapist who said our sessions are like Panadol. Sometimes the pain is stronger, and I need a higher dose to manage the pain. With intensive inpatient, I was told, hospital is like morphine. Stronger, more potent, and only needed for a short time until well enough to reduce the dose to Panadol again. There is no shame in being in pain and no shame in needing the correct dose of medication.

Battling alone with ED for 168 hours a week cannot be managed with one or two hours’ therapy a week

My mental health is like a roller coaster and, often unexpected in the dips and falls.  When ED has taken over, battling on my own for the 168 hours per week cannot be managed with one or two hours therapy a week. Malnutrition means I have halved the dose of Panadol and therapy is not having an impact as I have numbed the world and starved my mind. I know my only way forward is to feed my brain and build the mind strength to begin the trauma work again.
For me the hardest part about taking an admission means I am cut off from my team who have been holding me. The security of my family and my friends give way as I know they are there, but all distant in the background. I tell myself that the work I have done in therapy will be wiped away and be for nothing.
An admission has only one goal. The time is spent with the sole focus on food and refeeding the brain and yet I resist agreeing to the admission as I feel I am being punished for not getting it right at home.
As always, the battle is futile, so I pack my bags and, it seems, this is where the silence begins. I know how much everyone cares and want me to be well; they do not want to risk asking how I feel in case I renege on the stay. In essence, this sums up the entire stay ahead, food first, talk later. I find this approach void of consideration for integration of body and mind.

In a clinic, I face the harsh reality I am older than everyone else

From the moment I arrive in a clinic, I face the harsh reality I am older than everyone else. I should know better, how stupid are you? My mood is already as low as it can be so this is not a time to be friendly and smile. Everyone here knows each other, why would they bother talking to me? I tell myself My 20 years older than them accounts for the 20kgsI carry above everyone else’s weight. All these thoughts justify why I have snuck in weight loss tools.
Yes, protocol is for staff to check bags on arrival, yet my ED always controls. I am honest to a fault in all areas of my life but here, I need an insurance policy, and this means withholding the truth. Staff check what and where they can but ultimately, if the ED chooses to manipulate, there is little they can do.
Arrival and admission takes the morning and the introduction to the program and other patients are at lunch. Stony silence greets me as everyone is grappling alone with their demons. As I stare at the exorbitant amount of food on my plate, there are no resources available like at home. It astounds me that I am at a table of many, yet we are all trapped alone with our thoughts. Where are the distractions, the connection, the encouragement that may slow the tirade of toxicity that has been given room? I am almost 50, not 15 and I don’t have to weight restore. The amount of food is fine for them but I am not eating that amount and self-hate and self-pity engulf me for agreeing to this inpatient stay.
With a busy mind it is hard to connect and, unless it is meals or compulsory groups, I isolate from others in my room. Again, another win for the eating disorder to keep me to itself.
As day one ends, I am reminded this is Groundhog Day. Eat, sleep, repeat.
All clinics have their own set of rules that align with an end goal of discharge and without intention my “good girl” comes out to create no fuss and draw no attention to my vulnerability. I do not trust me. I do not trust the staff either, so this leaves me with ED. If I can show how capable and committed, I am, I will move through the program and be allowed to go home.

Get in, get out

Get in, get out. Once admitted as an inpatient, I cease to fight. I know resistance will draw attention to myself and I do not want staff keeping an overzealous eye on me and prolonging my stay. My goal on entry is to “do my time” and leave before the end of three weeks. The constant food feeds my brain, but I am not prepared to stay and let it start to feed my body.
The doctors’ visits are scarce, and they do not know me at all. The nurses are busy with those who make a fuss or are known to not finish their food. This makes it easy for me to get away with more than I should. Even after the hardest meal, if I am silent and smile, no one checks in with me. Here, with others making noise, I can easily lose myself in the crowd. It is very simple on the walk back to the holding yard, to slip away for a moment and not be noticed to relieve myself of food.
Here, as one of many, I am nobody and nothing. Each patient has their own horrors and staff do not seem to be trained to see how I may best benefit from support. The only way to achieve success is to create space between the ED and me. To do this, finding someone who cares and can see me through my well-behaved masks is imperative to my treatment plan.
It can take days before the dietitian fits me in, by then I have eaten more food than I would have tolerated in a month at home and my resentment has risen as I feel ignored.
As food groups and food amounts are discussed, and a history of my rules are glossed over, I do not understand why the treatment team has not contacted my dietician at home to provide a shortcut into my mind. My community-based dietician is willing and ready to collaborate, yet the hospital team seems to think that asking me to be openly and fully transparent, when the treatment goal is to gain weight, will work. For me, this is akin to asking a child to sit in front of a bowl of sweets but not be tempted to help themselves. Some expectations are unreasonable, and, by nature, my ED will bend the truth or lie.

My ED does not want to be seen, and I don’t feel seen as a person

If anorexia is not only about the food, why is treatment only about the food? Where is the care and compassion for the human I am, beneath this disease?  With a revolving door, I can calculate how many patients the therapists see come through the doors and I wonder how many of them leave and hold their recovery strong. My ED does not want to be seen, and I don’t feel seen as a person. I am simply another patient to halfheartedly supervise through the day and night.
Each meal, weekly weigh-in and each group is predictable, and I don’t know how to ask for more attention and support. A pat on the hand, and “well done to you” proves I am alone to grapple with the fears and horrors that are my inner reality. I am alone from the day I agreed to be an inpatient.
Once you see me, once you hear me, once I am more than just a number then perhaps, I can share some of my reality and thoughts. While the focus is only on the food, and not on me, I feel more isolated than ever and the lure of the ED I am here, and I care gain momentum with you are not alone.
Sessions are a waste of time; everyone in the room can tell you that. We know calories; we can list our food rules and we can plot ways to make changes to our lives. I am convinced, in each of these sessions, we know the content better than the staff. They have read it in a book or studied hard, we have integrated this into our lives. To try to teach us is absurd.

To sit in silence does not serve me well

This illness is a disease. I may be unwell, but I am not a fool and sitting for an hour being shown basic charts or children’s books will not ignite the desire to think in new ways. Therapists run their sessions then disappear, unavailable to be interrupted. Even when I find my voice to ask for help to sort my thoughts, therapists are hidden away in the office as their priority seems to be updating notes.
They have catered to my ED and have left me alone with my thoughts. To sit in silence does not serve me well. My ED voice needs to be heard out loud and challenged by the staff, and then by myself, yet it seems the session is done, and I am expected to have all the answers I need. I want to scream and yell I am sorry, am I wasting your time? Instead, I push down the urge and behave. I am unsure what these notes say about me, as they don’t share the notes, and they don’t know me at all.
Mealtimes are fraught with loneliness, a fragile hush enveloping the room. My mind wanders and I empathize with others battling their own sets of rules as I watch, learning new tricks to hide the food. The silence is an invitation for my ED to launch its abuse, reverberating around my body and my mind.
Once the meal is complete, we are corralled into a room to be supervised by staff. Here most of us sit in silence, overwhelmed by thoughts. Some days are harder than others, so I look around for support, yet staff are engrossed by their phones. I imagine other patients feel the same as me, yet the rules of the hospital state no one shall discuss how we feel, supposedly to avoid triggering others. This for me, is the most painful part as I am being asked to hide my pain. I do this at home, but hospital is meant to be for support. Unfortunately, it caters for the mass rather than individual need.

My insides scream for a therapist to sit with my tears

My insides scream for a therapist to sit with my tears, another time I want to beg the psychiatrist for drugs to make this torment go away yet I know I must keep quiet. The system has a scaling system and the sooner you make progress, the closer you get to home.
Eat well, don’t complain, and ensure compliance and the staff will trust you a little more. Freedom buys permission to take a daily walk. Once out of the building, all sense of right and wrong are swayed and the pull to undo some of the damage is the obvious choice to make.
I have tried to reach out, I have tried to connect but my barriers have been too strong. Without connection and trust with the staff I cannot admit to them I am back to square one. My family miss me, they want me home, and so I have the perfect reason to leave. I have given three weeks for this hospital admission to work, and no one tries to dissuade me when I tell them I’m ready to go home.
I wish there had been family therapy while I was tucked away so I could have tried to be honest with my loved ones when I get home. I wish a baton of care had been passed between community and hospital-based care to ensure I can run the recovery race, but this does not happen.

Until inpatient care is holistic, it will not be my place to heal

Such value would have been gained if the hospital team had spoken with my community-based team. Instead of isolating me from my world, perhaps traction could have been made. I have suffered much loss in my life. Three weeks may not seem a lot to others but to me, it is like the bottom has fallen out of my world and I am alone again. While my community-based team has invested a lot in me, I have worked hard to let them know the real me. They know the trauma under the pain, and they will continue to work with me once I am home.
I do know I am too lonely for hospital; I have no connection there. This is why I know it is time to go home. I hope each time I try something new, there has been some benefit for the healthy me. I have curiosity to know if this respite has helped or just provided my community-based team and my family with some time away from me. My ED will never allow anyone to know the true depth of its hold. Until inpatient care is holistic, it will not be my place to heal.
Recovery may be slow; it may be tough, and I am hoping my team are willing to see this through. But for me, right now, there is no question, home is where the healing will happen.

To recover from an eating disorder, ultimately home is where the healing will happen

An eating disorder is not solely about the food, and, therefore, recovery cannot only be about the food. Holistic care creates space to refeed and nourish the body, while holding space and supporting the mind, ultimately allowing the patients the freedom to be courageous, look within and find the strength and courage to move forward. This takes a willingness and openness to trust others while they seek the trust within. No one should have to face their ED demons alone.
For some, this battle needs extra support along the way and inpatient treatment may be recommended. If a patient has agreed to an admission, please remember they are there on loan. And like all things borrowed, they need extra care to ensure they are returned home in better condition than when placed in your care.

Solutions
  1. Connect with the patient

The patient is isolated from their family, friends, and community-based treatment team. To be in the best position to make a difference, stop and listen to your patient. Equally important is making time to hear what is not being said. If they have taken an admission, they are NOT okay. If they appear to be coping, they are using their ED as a mask as this has served them well. Do not be fooled. An admission itself, is a cry for help.  The patient is in your care 24/7. Rather than direct your patient to partake in “tick a box” therapy, spend time with them outside the mandatory one-hour appointment time. This way, you are more likely to meet their healthy self and see it start to shine.

  1. Connect with their team

With full transparency and inclusion of the patient, work with their community-based treatment team who know them intimately. They can provide insight, allowing you to meet the patient where they need to be and set current and valid goals. If you and their community-based team are working together, you are likely to be less threat and trust will be established. This team may hold the answers to many questions that take time and trust for the patient to share with you alone.

  1. Transparency within relationships

Balance the knowledge the patient is in your care for a small period without making them feel they are one of many through your revolving doors. They are in hospital on loan. Work with them, their families and their community-based team who know them intimately. Hospital is akin to filling a hole with putty and then returning the patient to their life. When you are with the patient, do not discount every thought as stemming from ED. If you do this, the patient is unable to be heard, and is unlikely to trust you. Now there is the lack of trust AND the ED between you. The patient is sick, not stupid.

  1. Truth and trust

Building relationships generates trust and the patient needs to feel they have permission to talk, to ask, to argue and understand. Allow them to repeat the same questions over and over until they can hear the answers in other ways. The ED is the holder of all secrets. Allow patients to speak openly and honestly, without judgment or repercussion. Cease being concerned about patients “triggering” each other as this will happen in the real world that they will return to. Teach the patient to manage the triggering as a way to reach out and ask for support. By isolating their voice, you are inviting the ED in. Silence and secrets are used and underutilized as per the rules of the unit. Give permission to the patient to voice their secrets so it does not grow larger in their mind. Feeding the brain will allow some freedom to think and make decisions however if we do not reach the heart, the patient will have to battle on alone and there will be no long-term gain from the admission.

  1. Holistic care

Focus on connecting with the whole person. Do not treat the ED. Treat the person.

  1. Adolescents and adults

Adolescents need to be cared for; adults need to know they are cared about.

About Karen Louise

As a mother of four children, I have, until recently worked full time in a high-profile job. As a high functioning professional and mother with a diagnosis of a severe and enduring eating disorder, life has continued to throw many challenges my way. Now, at a crossroad in my life, I want to live authentically, with purpose. Writing allows me to give voice to the battles that lie within.

As I continue working towards recovery, I am faced with the reality that nothing changes if nothing changes.

I hope my skills and hard-won experience will help me move in a direction of eating disorder and trauma recovery and allow me to create change, in not only myself, but also in eating disorder advocacy and eating disorder education.

All articles by Karen Louise

2 Responses

  1. Louise Wickers says:

    Wow-just overwhelmed. This is the nearest thing to how it is, that I’ve read. Thankyou, just Thankyou

  2. Kim McAlister says:

    An articulate recount of the exact treatment experience my daughter with anorexia is having.
    Thank you for using your experience to help and empower others.

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