This is a blog from Ellis, CAPS collective advocacy worker for the Seen But Not Heard group. Seen But Not Heard is a collective advocacy group for people with experience of eating disorders.
In October 2022, I started in my position as the collective advocacy worker for the Seen But Not Heard project for people with lived experience of eating disorders. For the past five months, I’ve had the privilege to meet some incredible people and work on projects that seek to challenge stigma and ensure the voices of people with lived experience are heard in discussions and decisions that directly affect their lives.
Today, challenging stigma related to eating disorders is crucial. Approximately 1.25 million people in the UK are currently affected by an eating disorder of one form or another. Some research suggests that people with eating disorders might attract more stigma and negative attitudes in comparison to other mental health conditions. Stigma affects the likelihood of people feeling comfortable enough to talk about their experience and seek help.
The Eating Disorder Awareness Week exists to educate the public and combat stigma related to eating disorders. The best way to learn about eating disorders and challenge prejudice is to learn directly from the people who have personal experience of eating disorders. Below are a few common misconceptions about Eating Disorders that our group work to challenge.
I’ve had the privilege to meet some incredible people and work on projects that seek to challenge stigma and ensure the voices of people with lived experience are heard.
It’s not true that only teenage girls get eating disorders
Eating disorders tend to be associated with affluent, heterosexual, young, white females, but in reality, they affect many people with different characteristics. For their latest piece of work, The Seen But Not Heard group decided to focus on people who identify as men with eating disorders. They were keen to focus on this group as they felt that there was extra stigma affecting men.
Through a survey they discovered that many men struggled being taken seriously by healthcare professionals. Men found it more difficult to speak out due to stereotypes. Yet, it has been estimated that around 1 in 4 of those with an eating disorder are male. Similarly, research suggests that a person from an ethnic minority background is less likely to receive a diagnosis when presenting with the same symptoms as a white patient. Stereotypes about the “type of person” who develops an eating disorder can make it difficult for those who fall outside of this type to access treatment.
It’s not the case that everyone with an eating disorder is thin
People of any size or body type can be experiencing an eating disorder. While a Body Mass Index (BMI) can tell us about the level of immediate risk, it does not reveal whether people are affected by various other physical and mental health complications. Moreover, the focus on BMI runs the risk of reinforcing fatphobic narratives.
Our group are planning to write an open letter to the Scottish Government with their thoughts on its decision to introduce mandatory calorie labelling on menus, highlighting the warnings issued by eating disorder organisations.
It’s untrue that there is no hope for people with eating disorders
It is true that statistically, eating disorders may result in more deaths than other mental health issues. However, they are also highly treatable. It is important to ensure people can access the help they need as early as possible. But it’s also important to remember that people successfully recover from their eating disorders at every stage and age. Recovery may not be a linear process with a clear beginning and ending, and will look different to everyone – and that’s ok. Hearing stories of hope, while acknowledging all the struggles and challenges, is an important part of the work our group does to raise awareness through collective advocacy.