When I was twelve years old, I was diagnosed with an eating disorder. At the time, I was young, confused, and struggled to communicate with others about what I was experiencing. I often rehearsed conversations in my head before saying them, wondering how I would respond if someone asked or commented about my situation. This left me feeling unsure and anxious, leading me to hide from the issue instead of seeking the help I needed.
When I finally decided to speak up and ask for help, I was fortunate to have a supportive team around me, which accelerated my recovery. ‘Hide N Seek’ was inspired by the idea of breaking through the taboo surrounding eating disorders. The name represents the journey from hiding to seeking, from silence to opening conversations. My vision is to support others in finding the courage to seek help too.
‘Hide N Seek’, a not-for-profit organization, is committed to creating open conversations, raising awareness, and providing invaluable support and resources to caregivers of individuals experiencing an eating disorder. With hindsight, I now understand that communication is the key to recovery.
Eating disorders are the fastest-growing mental health issue among adolescents in Australia, affecting people at all stages of life. According to ‘The Butterfly Foundation’, approximately 9% of Australians will experience an eating disorder in their lifetime, with more than 37% of these people being male.
If we can reshape the conversations around eating disorders, we can profoundly improve the recovery journeys of thousands of Australians.
Language played a significant role throughout my own experience. Certain words, like “suffering” and “diagnosis,” painted a negative picture in my head about what I was going through. I never wanted to be categorized or labeled under those terms. Throughout my healing process, I built the courage to understand and accept that those words were not negative. I realized that I did not need to shy away from them. Education has allowed me to understand the intended meaning behind specific words, which has helped me to recover.
Now, as a recovered and registered counsellor, my vision is to increase conversations on breaking the stigma around this issue. I am passionate about checking in on those around you and changing the language around eating disorders so that more people feel comfortable opening up and getting the support they deserve.
Each person has their own way of showing care and checking in on others. My experience has taught me the beauty of communication and how changing the language used in a conversation can alter its meaning.
‘Hide N Seek’ evolved from a need to speak out about my personal experience, into a desire to help others navigate the narratives of their own journeys. Everyone’s story is different, but language plays a significant role in the healing process. Building the courage to move from hiding to seeking help put me on the path to recovery.
Changing the language around eating disorders will change lives.
Through my research, personal experience, and work as a registered counsellor, I have found a critical gap in support and resources available to educators and caregivers, specifically around language and communication with people experiencing an eating disorder.
Caregivers are the frontline of this issue.
In saying that, here are some tips for caregivers of an individual experiencing an eating disorder:
Suggested conversation starters/sentences:
“You do not seem to be yourself. I just wanted to check in.”
- “I have not heard much from you lately, so I just wanted to see how things are going.”
- “How can I support you?”
“We always used to have lunch together. I feel like I have not seen you recently.”
What should not be said in conversation:
Do not use language that suggests blame or wrongdoing.
- Do not dominate the conversation.
- Do not use manipulative or threatening statements that focus on you.
e.g., “Think about what you are doing to me,” or “If you loved me, you would eat properly,” or “It is easy. Just eat.”
Try commenting more on behavior and emotion instead of physical appearance. Avoid getting angry or frustrated, even if a person rejects your concerns.
Tips my twelve-year-old self would give to my parents while I was in Eating Disorder Recovery:
Learn: Educate yourself! Sharpening your own skills and coping mechanisms can help you provide stronger support during this difficult but rewarding process.
- Remember who the person is: The person you are caring for is separate from the illness. It may help to see the illness as the problem and the person you are caring for as someone fighting the problem.
Be patient: Be patient with them and yourself. Recovery from eating disorders takes time and the journey will certainly include ups and downs. There will be good days and bad days. Be patient with the process and continue to support the individual in whatever way is natural for you. Stay as calm and patient as possible throughout recovery and remember that there is no ‘quick fix’.
How can I improve my communication as a caregiver of a loved one experiencing an eating disorder?
It is important to practice open communication, without judgment or negativity, and allow the person to express how they are feeling. Pay attention to the child/young person’s non-verbal reactions and body language and encourage them to trust and speak openly with you.
Practice statements or compliments that do not make reference to physical appearance, such as:
“It is great to see you,” rather than, “You are looking well/better/great” (this may be interpreted in a derogatory way such as, “I must be looking fat”).
“I love that color on you/your outfit,” rather than, “You look good in that outfit.”
How can caregivers stay positive during this time?
There is more to life than the eating disorder!
Draw attention to the child/young person’s positive attributes. Talk about the things they enjoy and are good at and the things you love about them.
Reminding the person of their life outside of their illness can help them realize they are not defined by their eating disorder – they are more than their eating disorder.
An article in the ‘Herald Sun’ newspaper in Melbourne, written by Jade Gailberger, highlighted a sad statistic: More people in Australia have died from eating disorders than on our nation’s roads in the past year. It also stated that more than 1.1 million Australians suffer from eating disorders, including 1 in 5 teenage girls, with only 1 in 3 seeking help. This alarming statistic propelled me to share my story and work towards a world where communication around this topic is destigmatized.
Educators and caregivers are powerful advocates for positive change in the lives of young people affected by eating disorders. We support the educators and caregivers.
‘Hide N Seek’ has created educational programs for educators and caregivers called the ‘Seek-Help-Speak’ School Program. A unique and impactful program empowering educators and caregivers in schools to recognize signs and symptoms, eradicate myths and misconceptions, and adopt the language of seeking help.
‘Hide N Seek’ has developed training for individuals within schools to become ‘Eating Disorder Support Team Leaders’, AKA, “Ambassadors of the Program.” These Ambassadors at schools will be given the opportunity, training, and tools to take ownership of supporting school colleagues and students.
By bridging the gap and creating consistent language between school and home, we can make a significant difference in early detection, support, and recovery, not only for individuals experiencing eating disorders, but also for their families and communities.
My real wish is that, together, we can change the stigma, change our language, and create an open pathway for people to seek help.