I think it is important to challenge the stigma around Eating Disorders. And I think that it is important that I, your moderator, share my story and make myself vulnerable to the readers.
Eating disorders have the highest mortality rate of any mental illness. They are also surrounded by a lot of stigma.
Eating disorders (ED) are often misunderstood, not talked about, and can be extremely dangerous. What makes them so dangerous, in my experience, is the silence. Too many people, including medical professionals, have a lack of understanding about the causes, symptoms, behaviors and internal struggles when it comes to ED. There is a myth that having an ED is about taking a diet too far — as if it is entirely about beauty, sexuality and is something you choose to struggle with. No one chooses to be sick.
It took me 17 years to discover that I am a lesbian. It took me 30 years to discover that I have an eating disorder. In my experience, there is less stigma associated with being LGBTQ+ than there is associated with ED. “Coming out” as lesbian was easy. “Coming out” about ED was terrifying.
Six years ago, I walked into an incredible agency called Sheena’s Place. The thing that makes Sheena’s Place unique is that the services are free and you don’t require a diagnosis or referral from a doctor for access. Sheena’s Place is welcoming for people of all genders and abilities and provides support, skills building groups, workshops and education. As much as I appreciated their services, I did not fully want to be there. I wasn’t ready to accept that my disordered eating was problematic or dangerous. That’s when Deborah Berlin-Romalis changed my understanding. So in 2017, when she asked me if I would be interviewed by the media, I said yes.
I knew that this interview would be challenging. I knew that opening up about my experiences with such a stigmatized illness would be hard. What I didn’t know was how vulnerable it would make me, or how I would be opening myself up to an entire country on their nightly national news broadcast.
In my first skills building group at Sheena’s Place, Berlin-Romalis taught me about the cycle of shame, my need to give myself love, my need to live on more than crumbs and the need to trust my own thoughts and feelings. This eye-opening experience left me with more questions than answers, so I began attending at least one group every seasonal session. It took time for me to settle in at the Sheena’s Place house. I was embarrassed to be there. Embarrassed that even other clients with similar experiences knew why I was there. I felt uncomfortable even going into the kitchen to make myself a cup of tea. I felt like I wasn’t even deserving of that one little act of self-care.
Through my skills building groups and my own work on my personal growth, Sheena’s Place has become one of my safe spaces. I don’t only make myself a big mug of tea, I also take my shoes off and get cozy the couch. It changed the way I think about what I deserve in life, what it is my right to demand and how I can work to take my life back from this illness.
In 2015, I started an art business that raises money for Sheena’s Place. It began with a coloring book and has grown to canvas prints, greeting cards, magnets, posters, framed paintings and calendars. I have an online following and love to meet strangers who have seen my work, have connected with it, and have come to visit me at shows and sales.
Sheena’s Place relies entirely on donations and has no government funding. Keeping their doors open is a huge undertaking.
On Friday, July 14, 2017, a news piece aired in which I had been interviewed about eating disorders and the Netflix film, To The Bone. That was the day I told the entire country I have an eating disorder. My family has no knowledge of my history or that I struggle with disordered eating. That is how sneaky and manipulative this illness is. I have managed to keep a deadly mental illness from my parents and family for more than 30 years. I kept the behaviors, symptoms and dangerous results a secret. I have been severely malnourished for so many years, but I “don’t look sick.” I do not fit the stereotypical media image that is portrayed and focused on. While the film opens up a crucial dialogue about eating disorders and the importance of treatment, it reinforces the stereotype of what it means to be “sick enough,” what a person with an ED looks like, and what type of person needs treatment.
My choice to be interviewed for national television about the most private part of my life was not an easy one. I also had very little time to make the decision. I have no idea how many people I know saw the piece, or how many times the piece will be shared and re-shared on social media. I was encouraged to do it for reasons of self-disclosure, to put an end to toxic secrets, to speak my truth and to advocate for those who are unable to speak for themselves.
My choice to be vulnerable was not so much about myself. My hope was that people see the news piece and decide to donate money to Sheena’s Place so that they can keep their services running. My hope is that people begin to talk about eating disorders as the mental illness that they are, and how they can affect anyone at any stage of life.
My dream is that one person will see the interview and learn that Sheena’s Place exists. My hope is that, however they identify, they make that first phone call to Sheena’s Place, or look at their website or send an email. If only one person receives support because I used my voice, then the fear and rawness I have experienced by opening myself up like this is absolutely worth it.