This week (February 21-27, 2022) is National Eating Disorder Awareness Week and on February 18, 2022, for the first time in three decades, this was made a White House Presidential Proclamation. Personally, the fact that this week was last recognized through a proclamation was in 1990 by George H.W. Bush, highlights the need for an increased awareness, understanding, and acceptance of eating disorders. #SeetheChange #BetheChange has never rung so clearly. With the additional attention brought by this week, my hope is to share my experience as well as pieces of the stories,triumphs, and tribulations of every person I have shared space with to share what I really hope is taken away from this week.
Eating disorders don’t always look like what you expect. I want to shout this from the rooftops. I want every teacher, every doctor, every therapist, husband, wife, parent, and coach to hear it. What words would you use if I asked you to describe what an eating disorder looks like? Do the words female, young, white, or thin come to mind? These descriptors only make up a small subset of individuals struggling with food and body, while eating disorders encompass all body sizes, races, genders, ethnicities, and sexual orientations.
I’ve listened to the stories of a military veteran. Praised for his control and physique while in a deep battle with depression and bulimia; critiqued for the weight he gained upon his return from treatment. I’ve sat in groups focused on female body image, femininity, and childbearing with men in their early twenties who feel completely alienated in their experience. I’ve met mothers and grandmothers who have been battling an eating disorder for their entire lives, only to finally be receiving treatment for the first time. I’ve heard stories from those who were advised to lose weight by society, by their families, by their medical professionals, all while seeking treatment for an eating disorder.
There are thousands of these stories out there and they are waiting to be heard. Unfortunately, they’re not. And this often leads to misdiagnosis, underdiagnosis, and/or delays in treatment of eating disorders in marginalized populations. Listen. Pay attention. Learn. Eating disorders are not what they look like and this is our opportunity to #bethechange.
**This is where I begin to share my story and I want to recognize the privilege that I have had in being able to access the care that I have received.**
A shocking number of those with eating disorders won’t have access to the care they need. The amount of treatment that an individual has access to is reliant upon many factors outside of their control. From getting a diagnosis and receiving a referral from a medical provider to having access to medical insurance that covers mental health care. Living in a state that has the necessary treatment located within the state, or having access to national coverage for out of state programming. Having a support network that provides the ability to sustain weeks (or months) without employment or an employer that will allow for an extended period of absence. And after all of that, still potentially spending months on a waitlist before beginning care.
This list is incredibly daunting. While writing it I thought to myself, ‘I can’t believe how much work. How much planning. How much preparation it took for me to get the care that I needed.” Now imagine trying to navigate this while having to explain over and over to medical providers, insurance providers, and treatment programs why you or your child deserves the care you are asking for. This process is exhausting. I can only speak for myself, but there were several points in my recovery journey in which this exact list is what kept me from the care I needed.
My treatment journey began by making calls (but mostly leaving voicemails) to twenty different therapists in a large metropolitan area on the West Coast. Each of these therapists specialized in the treatment of eating disorders. Each had a closed waitlist, but one had an intern starting next month. This sounded great, except insurance didn’t cover the $150 session fee. I stayed with them for 8 months, scheduling sessions around paychecks, before I was able to start with a provider in my network.
I developed a strong therapeutic relationship with the next therapist and a higher level of care was a constant topic of conversation. But, waitlists were long, I was avoidant, and I eventually made my return to Iowa. Hoping this conversation was over, I set out to establish a new treatment team. I successfully built a team with whom I had a strong, trusting relationship. We dug deep into my recovery with weekly therapy and dietician appointments. I made incredible growth, but we always returned to the conversation of a higher level of care.
10 months later I finally reached out to programs across the US. Most had 10+ week waitlists, and that was only after receiving approval from insurance to participate in an out of state program. I spent hours on the phone advocating for my care level needs and admitting to total strangers that I couldn’t do this on my own anymore. I had finally acknowledged what I needed and I was turned down at every corner-and during that time I lost total control. My outpatient appointments increased, my primary care provider became more involved, and I was eventually hospitalized. Waiting for a program to accept me while being kept medically stable.
During this hospitalization my team continued to support me while case managers called treatment programs repeatedly, trying to find a spot for me. This wasn’t easy and it wasn’t quick. Without having an employer that was willing to be flexible with my needs, even considering a higher level of care at this point would have never been an option. I am incredibly grateful for the team that took on the responsibility of getting me the care I needed when I had given up on myself because I eventually spent a month in an intensive inpatient program (that unfortunately did not meet my specific treatment needs) before advocating for a discharge back to my outpatient team.
Life after discharge revolved around recovery. The next 6 months required double insurance coverage and flexibility from my employer to allow for multiple therapy appointments, dietician appointments, and doctors appointments while I continued to grow.I made progress, but knew that my journey was far from over. As the end of that year approached, my team had that tough conversation with me one more time.
I’m a planner, so I anticipated this conversation (I may have also received some not so subtle hints prior to this) and changed my insurance benefits to allow for national coverage. I needed to seek a higher level of care, but now I had the privilege of choosing where I received that treatment and my mindset totally changed. I wasn’t being forced to go somewhere. I was getting to go somewhere. I nervously reached out to my preferred programs with the anticipation that there would be something that I missed. Something that would prevent me from moving forward, but I received prior approval, was scheduled for an intake assessment, and given an anticipated start date in 3 weeks. During which I planned a cross country road trip, crunched finances with my partner, and prepared to step away from work for an extended period of absence. Those 3 weeks turned into 6 weeks-each additional week bringing its own set of new challenges, but I was lucky enough to have a team that I could rely on for the additional support to get me to where I needed to be.
Throughout my recovery journey I am constantly reminded of the moments to pause and to sit in gratitude. As I sit and reflect on the arduous process of not only recovery, but of just seeking treatment, I am incredibly grateful for the love and understanding of my partner. For the support of all of my friends. For an employer that has allowed for flexibility and provided essential medical insurance. And for access to a knowledgeable, caring treatment team. I recognize that I would not have the opportunity to be where I am today if it wasn’t for the role that each played. This work was hard. This work was overwhelming, but I am at a point now where I can begin to recognize that it was all worth it. As I hear more and more stories of recovery, I am constantly reminded of just how incredibly lucky I am. Because as daunting as that journey was, it was filled with privilege that others may never have the opportunity to experience.
Communication is a key. For increasing awareness and decreasing stigma, shame, and blame around eating disorders as we work to provide equal access to care and recovery. Mental health has only recently become a topic of conversation. It’s understandable that eating disorders are something that those who haven’t experienced them have a limited understanding of, but unfortunately that keeps those suffering silent for fear of shame, judgment, or misunderstanding.
As I’ve talked more openly about my diagnosis and my specific struggles, I have found that the initial reaction is often a silence that I initially interpreted as a personal judgment. However, as I began to open myself to questions, expressing that I was hoping to take this opportunity as a teaching moment and would take minimal offense to any questions, I found that people actually had a lot to say. They just didn’t know how to say it.
This has been my favorite piece of recovery AND it has played the largest role in my movement toward full recovery. I love answering clarifying questions and providing feedback on language that is helpful vs. harmful. And I find that (in most relationships) I no longer live with shame attached to the eating disorder. And if you’re the one with questions, know that sharing this struggle requires opening ourselves to vulnerability. Most of us sitting in that vulnerability want support and my go-to is ‘Don’t worry about offending me, I want to answer all of your questions.’
My time spent in varying levels of care has been, on many levels, astounding. And I hope that through writing I am able to share an inside perspective on the work required to access the care that has been necessary for my recovery. Everyone’s story and experience, just like everyone’s body, is different. This is just one perspective. This is just my perspective. But I hope it continues to encourage open conversations around accessibility, availability, and modalities of eating disorder treatment. Not only in Iowa, but across the nation as well.