By Laney Park, F.E.A.S.T. Parent Support Volunteer
“It’s not the same thing. They’re not the same thing.”
The words rang out. Followed by a clarification. “I don’t mean to be contentious.”
Of course, the moment did feel contentious. It was prompted during a “Think Tank Session” held at the end of this year’s International Conference on Eating Disorders, by a question about why lived experience was not more represented in their panels and plenaries. The answer challenged the question.
“Lived experience is represented. Just not everyone talks about it,” was one panelist’s answer to the initial inquiry, a reference to the idea that many of the professionals and researchers on stage did have private experiences of eating disorders, either themselves or through family members. (“Lived experience” in this conversation is a term of art meaning personal first-hand knowledge separate from professional or academic knowledge.) The panelist’s answer was honest and one that opened the door to a more honest response.
Just what is the difference between a person who shows up to the table to represent lived experience and a person who is there in another context and also has lived experience? Doesn’t the latter give you both? Who needs a one-fer when you can have a two-fer? The panelist’s response could easily be seen as a dismissal. But it was also an opportunity.
Voices of lived experience come in many forms. This one, the inquirer, came from the leader of FEAST, an organization that supports and represents thousands of parents and carers across the globe. It was a voice with a story of its own and one that carries the stories of many.
One of FEAST’s greatest strengths is its forums, aptly named “Around the Dinner Table”. The name is a play on words about the family dinner table that is so important to helping individuals recover from eating disorders and the metaphorical table it offered its participants around the world. During a time in their lives when parents and carers were met with the challenge of feeding their loved ones, they also found a place to be fed themselves–with the hard-earned knowledge of their peers, with virtual cheers honoring their sweat and tears, and with information gained from the greater world of eating disorders research and treatment.
While nurturing its own table, FEAST has also worked towards establishing its place at another table — alongside the researchers and providers engaged in the quest to make healing from an eating disorder less painful and more likely. Finding a place at this table has not been easy and can still feel, as the moment above illustrates, like rolling a boulder uphill.
Voices of lived experience at the table matter because, when it comes to eating disorders and so many things, we don’t know what we don’t know. When all the parts aren’t able to work together, we are like the parable of the blind men standing around the elephant. The researchers at the trunk with all their knowledge of study design and analysis hoping that the topics they chose to study will bring real value to the field. Treatment providers standing at the tail, wanting to avoid unintended consequences in their well thought out protocols. And those with lived experience on either side wanting to know where to begin finding help or striving to continue their hard-earned healing after stepping down from each stage of treatment.
And while each part of the whole may have other experiences that make them who they are–parents that are also medical professionals, sufferers that are also researchers, professionals that have recovered from an eating disorder, they are also affected by who they are expected to be at the table. Professionals and researchers with careers to grow and protect are not the same as community members with lived experience who come to share how eating disorders and their treatment appear from the inside.
In one of my first attempts to share my own experience in a way I hoped would help others, I wrote to a Family-Based Treatment therapist expressing frustration at the time my family spent in her office. It had been clear to me that her training at one of the best programs in the country by the creators of the treatment itself hadn’t prepared her for us. During our sessions, I had been eager for her to contextualize our experience with psychoeducation or offer the training that we needed to parent this very different child the illness created. Her inability to do this when we were in crisis was unmooring. Was my child the only one to act this way? Was our family so much harder to help than any other? To her credit, she took the time afterwards to meet with me and try to understand what it was that hadn’t helped and what eventually did bring healing. I will always appreciate the courage she showed by listening and hope it made her better able to help others.
During our family’s most challenging times, I was grateful for the cries of “us too” and the offers of “this worked for us, maybe it will work for you?” that I heard when I presented the same issues in the FEAST forums. They saved us when the professionals could not. And, when re-feeding at home became too difficult, the professionals and the research that guided them helped save us, too.
We need everyone around the table because none of the parts are the same. And voices of lived experience will keep asking for this, even when we don’t mean to be contentious. Our loved ones and our families and the ones that might travel similar paths in the future deserve no less.
Thank you for writing this important piece. There is so much wisdom and expertise gained from the hard-earned in-the-trenches experience of caregivers—often things that can’t be learned from a manual or graduate program. We need all the experts putting our heads together to help people recover from these horrible illnesses.