08 Apr 2024

The costly reality of living with an eating disorder: Reece’s story

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To highlight why increased funding for eating disorder care, treatment and support is vital, Reece shares the costly reality of living an eating disorder.

Content warning: This blog mentions eating disorders, suicidal ideation and hospital admissions. For support, call Lifeline on 13 11 14.

‘Code white. Code white’. A stampede of footsteps echoed down the corridor, along with the familiar sound of keys bouncing off each other. A bunch of nurses ran into the room.

One of them jabbed the patient next to me with a needle as they had their hands wrapped around my neck. I had been transferred to a high dependency public mental health inpatient unit where I shared a room with a severely unwell patient.

As a scared young teenager with Anorexia, I didn’t expect help to look like that, but due to the high costs of community treatment, my only option was to plead for help at my local emergency department.

However, due to limited bed availability and a lack of specialised services for eating disorders, I was transferred from hospital to hospital with no real treatment. I was on a hospital merry-go-round, and it was far from an amusement ride. I was dying.

As a young 19-year-old, I had my whole life ahead of me. I was an aspiring filmmaker in my second year of a film and television degree. I was excited about my future but the future as I once knew it was slipping away from me. After many weeks I was finally offered a bed, but it was outside of my local health district.

My parents looked into getting me private health insurance so I could get specialised eating disorder care at a private facility, but they were already struggling with lost income from taking significant time off work to care for me and to cover the costs of traveling over 3 hours most days just to visit me in hospital.

I wasn’t aware of the financial strain it was already having on them until I received a letter in the mail saying I was summoned to court for unpaid medical bills. It all became very real when my father sold the family home to cover the debt.

Fast forward 10 years and I had personally accumulated a debt of over $100,000.

I was not only battling my eating disorder. I was battling numerous chronic physical and mental health conditions which required costly interventions and ongoing treatment. I was also struggling with my gender identity and came out as transgender. I didn’t think it was fair to have to choose between feeling at home in my body or having a home to live in.

I struggled for many years to afford to pay rent, feed myself and care for my health. This perpetuated my depression as I couldn’t afford to do the things that brought me joy in life.

I have been living on the Disability Support Pension now for over a decade. My life became so unmanageable I was unable to work for long periods at a time, and don’t get me wrong, I am grateful for such support payments, but I was living below the poverty line.

Sadly, in Australia there is a high link between mental illness and poverty.

The places I could afford to rent were borderline unliveable. I used to joke to my friends and say I had cockroaches as flat mates but when I wasn’t joking about it, I was on the phone to my mum in tears. I was exhausted and just wanted to go to sleep, but for every cockroach I removed another one appeared.

I had cold showers most mornings and had to sell my car to cover medical expenses. I was living off 2GB of mobile data per month and was losing sleep because I lived on the train line and was right next to an early morning waste disposal run. I was ineligible for priority social housing because I was unable to live in shared accommodation due to my OCD.

If I wanted a place of my own, it was close to a 10 year wait, so how could I possibly have held hope for myself, when support services in the community were turning me away for the complexities of my intersectional experience and I didn’t have the money to create my own private treatment team?

It was almost impossible to build momentum in recovery on insecure foundations.

The financial stress was so great I had plans to end my own life before I even had a chance to really live it. I was so severely depressed and suicidal, I had a mental breakdown and pulled apart an entire community garden out the front of my apartment complex before screaming that I wanted to end my life.

My OCD became so severe that I couldn’t feed myself without wearing disposable gloves. After the Covid-19 pandemic, a box of gloves sky rocketed to around $22 a box and I was going through 2-3 boxes a week, adding up to approximately $250 a month.

My Disability Support Pension was a little over $2000 a month in which I was paying $1120 for rent and $200 for private health insurance, the rest I used for bills and travel.

I ended up in this constant pattern of admitting myself to private inpatient mental health units to stabilise my mental health, only to discharge back into the community, unable to afford continuing care and within weeks, I was back in hospital again.

I even had to stop taking medication because it became too costly. I found a psychologist who bulk billed me, however they had no training in eating disorders. I could also only see them every 5-6 weeks if I were to make it last the full year before I could get access to another mental health care plan.

I felt so incredibly alone and powerless to change my situation and this went on for six years but knowing that there was always someone there to support me was what got me though. When I was in crisis or having a crappy day and there was a lot of them, I called a helpline – The Butterfly Foundation, Lifeline and QLife.

Helplines really do save lives. I know because they saved mine. It might be the most important conversation you ever have. Don’t underestimate the power of these calls.

I was held with compassion and encouraged to connect to even the smallest of things that gave me meaning in life – for me that was music. I joined a music program, and it sparked something inside of me to keep fighting. Recovery isn’t easy but it gets easier.

I am still here today to share my story.

To shine a light on the need for greater access to affordable treatment for eating disorders and co-occurring conditions and greater funding for prevention and early intervention.

I am proud to say that I am now a Peer Worker for the Butterfly Foundation’s Next Steps Intensive Outpatient Program, which is a free and accessible service. This program is not only life changing but lifesaving.

I believe that more needs to be done to make treatment accessible for everybody. I made it out the other side, just, but some people aren’t that lucky. Eating disorders are extremely complex and life-threatening so why is one of the deadliest of all mental health disorders one of the least funded?

Written by Reece Georgas (he/him), Peer Worker for Butterfly Foundations Next Steps Intensive Outpatient Program. Reece utilises his intersectional lived experience to foster hope and empower others in their own recovery. It is his belief that the process of recovery is about embracing authenticity and returning to inherent worth.

Further reading
Get support
  • For confidential and free support for body image concerns or eating disorders, call Butterfly’s National Helpline on 1800 ED HOPE (1800 33 4673), chat online or email support@butterfly.org.au
  • To find healthcare professionals trained in eating disorders, search Butterfly’s Referral Database
  • Qlife provides anonymous and free LGBTQIA+ peer support and referral for people in Australia wanting to talk about sexuality, identity, gender, bodies, feelings or relationships. Call 1800 184 537, 3pm-midnight, 7 days a week.

Related tags: Eating Disorder eating disorder funding gender identity Lived Experience living with an eating disorder paying the price Paying the Price 2024