Blog

Node Map

From Struggle to Strength: My Journey with an Eating Disorder and the Need for Better Support

My eating disorder journey began in my teens, but looking back, the seeds were sown much earlier. At the age of seven, my epilepsy medication affected my appetite, making me constantly hungry. Bullying at school drove me to seek comfort in food. These childhood experiences around food gradually developed into an obsession.

My gran showered me with comfort and rewards through food, while my mum was strict, making me feel guilty if I didn’t clear my plate. My feelings of guilt made me think about food constantly.

As I grew older, my relationship with food and exercise became even more obsessive. During a challenging relationship that lasted several years, food, and exercise were the only things I felt I had control over in my life. It became my way of coping with the chaos around me.

When my therapist told me about EDGI UK and gave me a leaflet, I felt a spark of hope. Joining the study was my way of helping others, especially teenagers, feel less alone and understand that there is help available.

The Importance of Timely Support

One of the biggest challenges in dealing with eating disorders is the lack of immediate support. Society needs to provide more accessible and timely help. When I first sought help for my eating disorder, I was seen quickly. However, ten years later, I found myself on a three-year waiting list. This delay can be devastating for individuals struggling with eating disorders, as timely intervention is crucial.

Despite the challenges of long waiting times and the occasional lack of coordinated care, seeking help has been transformative. My experience has shown me that while the path may be difficult, the benefits of seeking help far outweigh the struggles. Getting support, even if it's not immediate, can provide a foundation for healing and improvement.

There needs to be more awareness of conditions like binge eating disorder and bulimia. When I had anorexia, I received help relatively quickly. However, my case was complicated because of my other health issues. Ten years ago, after a suicide attempt and experiencing up to five seizures a day, I was placed on an epilepsy ward. Eating disorder and mental health professionals visited me there. This was a rare coordination of care that is often lacking in our healthcare system.

Debunking Myths

One of the most damaging myths about eating disorders is that you have to be underweight to get help. At different points in my life, my weight has fluctuated drastically, and throughout these changes, I’ve continued to battle with eating disorder behaviours. Health professionals and society must understand that eating disorders come in many forms and affect people of all shapes and sizes.

Hopes for the Future

My hope for the future is that people will get support for their eating disorders quickly. We need to dismantle the stereotypes surrounding these conditions and ensure that anyone who needs help can access it without unnecessary delays. I also dream of my book and mental health packs being available in every school and library. These resources cover twelve different topics, including epilepsy, eating disorders, mental health issues, domestic violence, and LGBTQ+ issues. They share my story and provide hope to those who feel alone, highlighting the amazing charities and organizations ready to help them.

Joining EDGI UK

By joining EDGI UK, you can be part of a movement that aims to improve understanding and treatment of eating disorders. Your participation can help shape future research and interventions, ensuring that others do not have to wait years for the help they desperately need. Together, we can make a difference.

Recognition and Advocacy

I’m honoured to be nominated for the West Country Women's Awards for my book "Jo’s Hidden Secrets" and my fundraising efforts. Additionally, being invited to an annual epilepsy event at Disneyland California in November is a testament to the importance of advocacy and raising awareness.

Conclusion

My journey with an eating disorder has been long and challenging, but it has also been filled with moments of hope and resilience. The path to recovery is often not straightforward, and while there are obstacles like long waiting times, seeking help has led to significant positive changes in my life. By sharing our stories and supporting research initiatives like EDGI UK, we can create a future where eating disorders are better understood and treated promptly. If you’re struggling, know that you’re not alone, and there is help available. Join us in this important study and be a part of the change.

Date:August 19, 2024
Authors: Emma Louise James, facilitated by Saakshi Kakar
Am I Eligible?

To take part in the Eating Disorders Genetics Initiative, part of the NIHR BioResource, you must:

  • Have experienced, or have been diagnosed with an eating disorder
  • Be aged 16 and above
  • Live in England

Sign up TO EDGI UK, part of the NIHR BioResource

Developed in collaboration with Beat, the UK’s eating disorder charity, and with patients and service users.

If you are younger than 16 and interested in taking part, please contact the EDGI UK team at edgi@kcl.ac.uk.

You can withdraw from the study at any time.

Already have an account? Login or Recover Password

The EDGI UK enrolment process consists of four steps:

  • Reading the Information Sheet
  • Providing consent
  • Completing our questionnaire
  • Providing a saliva sample
Talk to us

Please be aware that phone calls go straight to voicemail. We recommend emailing for a faster response.

Our Office hours are:
Monday to Friday 9:00am to 5:00pm

Please note that we will not be able to call you back if the number provided is not a UK based telephone number

Need any help?