Eating disorders and psychosis: Dee’s story

I wish I knew the signs of psychosis earlier.

Experiencing an eating disorder is hard. Experiencing psychosis is hard. Having both simultaneously can be a nightmare. Both are illnesses that are often misunderstood and can be difficult to treat – I know this firsthand.

How did your eating disorder and psychosis develop?

Around age 12 I started to have a difficult relationship with food. By age 13 I started to engage in eating disorder (ED) behaviours. In the middle of a family breakdown my eating disorder felt like my lifeline. I didn’t really have much support, some people around me noticed more than others but no one really knew.

It wasn’t until I was a few months shy of 16 that I engaged with proper mental health care, which I was referred to after a suicide attempt. My family situation had become worse, I was incredibly stressed, anxious and depressed.

On what started off like any other day at school by lunch had become a day that would change my entire life. In the middle of class I started to hear and see things that no one else seemed to. Looking back, I know there were early warning signs of psychosis like feeling disconnected from myself, not being able to focus on things that I previously could (like schoolwork) because my brain felt ‘messy’, feeling really confused and lost, and like my life wasn’t real.

These extreme symptoms felt like they came out of nowhere, but because I didn’t know much about psychosis I didn’t think anything of them. I know now that psychosis can be prevented if you get treatment early. That’s why we are raising the profile of the early warning signs via @psychosis_understood on Instagram.

I started Psychosis Understood with a group of 12 other people who have experienced psychosis as part of my work at Orygen, a world-leading youth mental health research institute. Through the account we are trying to increase understanding about psychosis, provide coping strategies and encourage people with lived experience to help design research and ultimately better treatments.

Did your eating disorder cause your psychosis?

In short, no. But it did make my psychosis worse, and my psychosis made my eating disorder worse.

It became difficult to tell my ED thoughts/ ED voices apart from my psychosis voices/ thoughts. At times my psychosis voices would just amplify my ED thoughts, giving them a name, face, voice and even a body. It made my eating disorder treatment an incredibly distressing experience (as if a lot of ED treatment isn’t already distressing enough).

I didn’t feel like my treating team always understood the interactions between the two diagnoses and it was hard to verbalise something I didn’t fully understand myself. I wonder if I’d had better understanding of psychosis, if I would’ve had less forced treatment. I wasn’t a difficult patient, I was a scared patient. That’s the main reason I’m sharing my story here, because if more people know about psychosis symptoms and the impacts these have, they can articulate them to their care team.

What was treatment like with an eating disorder and psychosis?

I couldn’t work on my eating disorder recovery until my psychosis symptoms reduced.

I received a lot of intensive care from age 16-18 which included a large amount of inpatient psychiatric care. I was experiencing seven mental health conditions, but my care team initially focussed on my ED treatment under the mental health act. I believe my ED and psychosis were both symptoms of extreme stress and lack of control over my life. Focussing on removing my ED, which was giving me a much needed sense of control, caused me a lot of stress making my psychosis symptoms worse.

A pivotal moment was when my care team realised that intensive treatment wasn’t working and took a step back.

When the pressure stopped, the psychosis symptoms mellowed. For the first time in a long time my ED was standing somewhat alone, and this is what I needed to be able to tackle my ED recovery at my own pace. Whilst it was still incredibly difficult, it was so much easier facing ED recovery without my psychosis symptoms.

My life now

I didn’t really know what to do with myself when I started to feel better. I had spent all my energy on dealing with and trying to recover from my conditions, it felt like something was missing when the symptoms lessened. It became important to my continued recovery that I find a new purpose.

I started doing lived experience work as a volunteer when I was 20 at the same places where I received care / treatment.

It has been such a rewarding and fulfilling experience to use those dark times of my life to help build brighter days for other people going through their own tough times.

Now, five years on, this is my whole career! I’m a lived experience coordinator at Orygen, a world-leading youth mental health research institute.

Some days I still can’t believe I made it through everything. My life looks very different to when I first became unwell, I couldn’t have ever imagined that this is where I’d end up.

Whilst if I had the choice, I’d never go through those experiences again, I’m grateful for the life I have now and know that there are so many wonderful things I wouldn’t have if those though times hadn’t happened, so it’s a little bittersweet.

My hope is that I can continue to do work that means other people who have had similar experiences can go on to have better outcomes – however that might look for them.

It’s been a long journey so far but a worthwhile one. My advice to people currently experiencing an eating disorder and psychosis would be that complex mental health conditions can be a lot to manage on their own, let alone when there are multiple ones. It can be tricky for you and your treating team to know what to tackle first.

Going in too hard all at once can cause extra stress which can make your symptoms worse. It is important that you and your care team accept that it’s going to take some time to unpack what’s going on for you. Negotiate with your team what you want to tackle first.

Don’t be afraid to ask if you can focus on something else i.e. psychosis and get back to the other stuff later. Don’t be afraid to say what’s important for you, it is ok to break things apart. Sometimes you have to look at the step, not the whole staircase.

Written by Dee, Lived Experience Coordinator at Orygen

Dee knows what it feels like to be misunderstood by clinicians. Finally getting proper treatment for psychosis, made a big difference to Dee’s eating disorder recovery. Dee is now raising the profile of psychosis symptoms via psychosis_understood on Instagram. Anyone can experience psychosis and extreme stress and trauma increases the risk.

Learn more about psychosis and get support

• Psychosis_Understood
• headspace – Early psychosis support:  free and confidential support for young people who are experiencing an early episode of psychosis or are at risk of developing psychosis.
• Kids Helpline provides phone and online counselling for young people aged 5 to 25. Call 1800 55 1800.
• Lifeline provides online and phone crisis support. Call 13 11 14.

Get support for an eating disorder

If you’re concerned about yourself or a loved one who is experiencing an eating disorder and psychosis, reach out for professional support as soon as possible. A GP is a good place to start, or you connect with the counsellors on Butterfly’s National Helpline by calling 1800 ED HOPE (1800 33 4673), chat online or email support@butterfly.org.au 7 days a week, 8am-midnight (AEST).

Find an eating disorder healthcare professional – search our Referral Database for healthcare professionals that specialise in eating disorders.