Lived experience stories to boost understanding of eating disorders
Lived experience stories to boost understanding of eating disorders
People with eating disorders can’t afford to wait – so what can be done to overcome misconceptions about this illness? The team at Body Brave and Canada’s National Initiative for Eating Disorders (NIED) is arranging an event where people with limited knowledge of eating disorders can gain anunderstanding.
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By Erin Huston
The value of lived experience
When I was diagnosed with anorexia nervosa at the age of 16 I had no understanding of eating disorders or disordered eating. I had no knowledge of statistics, of co-morbid disorders, and no understanding of what treatment looked like for someone suffering from an eating disorder. And truly at that time, I did not care. Going through a day of interviews, blood tests, and intake assessments I was not concerned with what the literature said about what I was going through; I only knew what I was experiencing, I knew what the past few years had been like from my side, and I believed that mattered. A few weeks later as the appointments continued, I told the hospital team that I thought I was experiencing a co-morbid mental health disorder. The teamsaid there was no way I had that certain co-morbid disorder because it was not ‘statistically proven’ to co-exist with the restrictive eating disorder I was living with.
In that moment, my experience and knowledge of myself were disregarded and replaced with clinical trials and statistics. This story is one we hear time and time again, which is why we decided to build Body Peace on the foundation of lived experience. The lived experience of individuals living with disordered eating is valuable, so is the lived experience of caregivers and healthcare workers treating those with disordered eating. All those involved in the treatment support of those with eating disorders have experiences that are capable of informing those around them.
What is Body Peace?
Body Peace is a first-of-its-kind virtual Body Image and Eating Disorders conference, entitled “Lived Experience is Evidence Too”. Taking place in October 2019, Body Peace is designed specifically to create a space where survivors, caregivers, and health professionals can connect and learn from each other. The conference will feature training modules and workshops for professionals, caregivers and survivors, all designed to meet the unique needs of each group. The conference will also feature keynote speakers and panel discussions that will highlight innovations in the eating disorders and body image field.
Over the three days of the conference, Body Peace 2019 will offer three different areas of focus: Innovation, Representation, and Collaboration. The first day of Innovation will highlight clinical and nonclinical innovative approaches, fresh ideas, and new perspectives in the realm of body image and disordered eating. Focusing on Representation will highlight the dynamic and diverse voices of those with lived experience, caregivers, and clinicians; creating a space to uplift and magnify the voices of those who have been underrepresented. On the final day, Collaboration will focus on the ways we can all collaborate, joining our voices to break down stigma and promote empowering approaches to healing.
Body Peace 2019 is a conference designed to challenge barriers, embolden conversation, and equip people with the tools to create lasting change in their lives and practice. We believe that the impacts of this conference have the capability to go well beyond these three days.
Transforming evidence
Body Brave was founded and designed by people with lived experience for people with lived experience. Here we know that not every truth can be recorded in research, and not every experience can be written up in a peer-reviewed journal. Body Peace 2019 is about championing lived experience and encouraging professionals and survivors alike to value lived experience as evidence alongside academic research.
Importantly, this approach does not mean negating academic research, rather inviting lived experience into space as an equally valuable form of knowledge and understanding. Our focus is on sharing and learning from the lived experiences of those living with eating disorders and body image issues, and those who are directly involved in the treatment and support of those individuals. For those whose bodies have been marginalized by the dominant society, sharing your experiences means that those with similar experiences are being represented.
Why ‘Peace’?
Sometimes, loving our body is not an option. Sometimes, the best we can do is accept our bodies. We chose the term ‘peace’ for the title of the conference because of this battle. Loving your body is not always an option, and it can be a very hard thing to achieve and aspire towards. Sometimes accepting our bodies, being at peace with our bodies, and just respecting our bodies is enough.
I have been in recovery for six years now, and there are still many days when loving my body is not an attainable goal for the day, the week, or the month. But whether I love my body or not, I respect my body and because of that respect I know that I need to eat, I need to hydrate, I need to move, and I need to rest.
There is a huge jump from a disordered eating mindset to loving your body enough to practice healthy eating habits. We want to acknowledge that with this conference and invite those seeking to create peace with their bodies into this space. Body peace is for everyone.
About Erin
Erin Huston is completing her Masters in Social Justice and Community Engagement at Wilfrid Laurier University, while serving as the Body Peace Conference Coordinator at Body Brave in Ontario, Canada. Established in 2017, Body Brave is a body-inclusive, weight-neutral, recovery-focused community that provides services for individuals 18 years and older, struggling with weight, food and body image issues, including eating disorders such as binge eating disorder, bulimia and anorexia. To find out more about the Body Peace Conference please visit https://livingbodybrave.com/bodypeace.
About World Eating Disorders Action Day 2019
This year grassroots activists, volunteers, and over 250 organizations in 40+ countries are calling for caregivers to receive support, health care workers to be properly trained, and access to immediate, evidence-based treatment.
Why We Can’t Afford to Wait
• Worldwide over 70 million people are estimated to be affected by an eating disorder,
• Eating disorders have the HIGHEST MORTALITY RATE of any psychiatric illness
• Eating disorders affect people of all genders, sexual orientations, ages, socioeconomic class, abilities, races, and ethnic backgrounds. It is time to take action.
• Good news! When treated EARLY and correctly, eating disorders have the highest and fastest recovery rate!
How to support World Eating Disorders Action Day, June 2, 2019
1. Join the movement, show your purple on social media!
Use hashtag #ShowUsYourPurple
2. Follow conversation on social media.
Use hashtags #ShowUsYourPurple #WeDoActNow
3. Host or attend an event.
http://www.worldeatingdisordersday.org/2019-events-2/
4. Donate. To support the work
http://www.worldeatingdisordersday.org/get-involved/participating-organisations/.
5. Discuss eating disorders. Through open, supportive dialogue, we can create change.