Hugo's story – Eating Disorders Awareness Week 2023

Raising awareness for men’s mental health is more important than ever. This year, Eating Disorders Awareness Week (February 27th – March 5th) focuses on men’s eating disorders. 17-year-old volunteer, Hugo, shares his lived experience and his motivations for joining the EDGI UK study, part of our Mental Health BioResource.

Eating Disorders Awareness Week (EDAW) 2023 aims to put gender stereotypes to bed with this year’s theme, which focuses on men with eating disorders. The campaign is run by the UK’s largest eating disorder charity, Beat, who are also a partner of the Eating Disorders Genetics Initiative (EDGI) UK, along with researchers from King’s College London. EDGI UK is the UK’s largest ever study of eating disorders and is part of our Mental Health BioResource.

This year’s campaign - #HelpMenGetHelp - hopes to put on spotlight on the different experiences men face so that we can create a safer space for men to turn to for support towards recovery. Often symptoms in men go unnoticed by those around them because pervasive toxic stereotypes lead people to think that they “only affect women”, which prevents men from speaking up.

Beat launched the UK’s biggest survey to date on men’s experiences with eating disorders. They found that one in five men had never spoken out about their struggles, six in 10 were disappointed with the help available to men, and four in five felt that raising awareness would help more men get treatment sooner.

Commenting on men’s eating disorders, the EDGI UK team said:

“The misconception that eating disorders occur only among women, and the consequent exclusion of men from research has led to key gaps in our understanding of the clinical presentation and management of eating disorders in men, along with gaps in our understanding of issues relating to classification, assessment, and treatment.”

Seventeen-year-old BioResource volunteer, Hugo, is an EDGI participant, having signed up after living with an eating disorder and associated mental health conditions for several years. Hugo kindly agreed to share his story.

For years I struggled with how I felt, then I got ill, really ill. Mental illness is one of those really weird things to suffer from, it’s incredibly isolating – the thing is when someone has a physical, visible illness its seems that life stops and everyone is concerned, caring and eager to help them recover. With mental illness, none of that happens, some even don’t understand when you use the word ‘sick’ to describe your condition."

Hugo decided to become a BioResource volunteer in the hope of better treatment options in the future, after his own negative experience trying to access care. He was refused eating disorder treatment by the NHS because he did not meet the physical criteria required to be eligible, despite displaying clear symptoms of anorexia nervosa alongside his existing diagnosed conditions (generalised anxiety and depression).

"My journey to recovery was a lot harder than it ever should’ve been and the unfortunate truth is thousands of young people are fighting their own illness but also the battle to receive care."

Commenting on his motivation for taking part, Hugo added:

"This is why I signed up to health research because I know times will change and no mother, father, parent or sibling will ever have to go to sleep or leave the house with the fear their loved one will have taken their own life by the time they return.

"I want people to know change is coming, I sit here today living the most I ever have, I pushed through the odds."
“I have bad days, but I am still here to tell my story and help save lives.  That is why health research carried out by the BioResource is so close to my heart.  It gives me hope in knowing change will come.” - quote from Hugo

There are thousands of people like him not only battling their illnesses but battling to receive care too. At the BioResource, we are committed to understanding the causes of disease so that we can improve diagnosis and develop better treatment options. By understanding the role both our genes and environment play in the development of these conditions, we are better equipped to help those who are experiencing them.

How can you get involved?

Eating disorders affect one in 50 people in the UK. If you’ve ever experienced an eating disorder, or think you may have one, please consider signing up to EDGI UK. EDGI UK aim to collect the psychological, medical, and genetic information of 10,000 people with experience of any eating disorder. If you are below the age of 16, please consider becoming a D-CYPHR volunteer.

Learn more about our Mental Health BioResource and if you are interested in supporting further health research, please consider joining the BioResource.

If you are a researcher, learn more about using the NIHR BioResource to support your work.

Want to make a difference?

Our volunteers help to advance health research that benefits generations to come. Every volunteer makes a difference.