A girl I’ve never met inspired my interest in helping people with eating disorders. I don’t know what looks like or her last name, but I do know her story. Back in 2014, battling my first episode of depression, I came across a general mental health emotional support website. It was there that I gave and received support. I became a volunteer “listener” during this time, which entailed basically providing a virtual ear and directing people to various resources as needed. I don’t remember exactly when I met her, but I met Rebecca, who would soon become a close online friend.
I don’t recall exactly when I found out, but I learned that Rebecca struggled with the eating disorders of Anorexia Nervosa and Bulimia Nervosa. She lived in Michigan, a state that even today lacks the
resources that some individuals with eating disorders require like residential treatment centers. Rebecca was looking for further treatment, but there were further problems that prevented her from doing so.
Medicaid, the state insurance program designed for the poor, was her only insurance. To date, only a handful of residential treatment centers within the United States accept Medicaid. For people like
Rebecca, Medicaid typically only covers inpatient medical stabilization treatment and outpatient therapy. This leaves people with an inability to access higher levels of care or leaves already
impoverished people with the financial burden of paying for treatment themselves.
It’s not uncommon for people to have to apply for funds needed to finance treatment. Scholarships exist, but they require going through an application process that people may not be accepted for. Eating disorders are the deadliest form of psychiatric illnesses in the country., yet they are often misunderstood by many. They are not choices and an individual with an eating disorder cannot “just eat”. This is a mistake I made early on in my friendship with Rebecca. I believed that she and others were being stubborn in their refusal to eat. I learned that trying to pressure Rebecca into eating had the opposite effect, it made it harder for her to eat.
Later in our relationship, I discovered what the inner “voice” of an eating disorder was like. In Rebecca’s case, it meant her saying things that were unlike anything I’d ever seen. This “voice” would tell me that she needed to lose weight and self-destruct; that she was fat and needed to not eat. It was almost like talking to someone else entirely, a separate personality. As I identified warning signs that the “voice” was beginning to take over, I had to be firm. Giving in to it would cause Rebecca to be worse, I could tell how her thoughts would become darker and more disordered. I didn’t like doing it, but it was at least one way that I could help her at least in the moment.
Finding ways to help her became challenging and I wanted to help more. One day, when Rebecca mentioned feeling that she needed a higher level of care (residential treatment) I came across the website of a well-known eating disorder helpline. I offered to reach for her to see if they could help and she agreed. About a week later, I received an email with what they had found for residential treatment centers.
Optimistic, I opened the email and discovered that they didn’t find any in Michigan. The closest option was in Wisconsin. The email also included information on other options to obtain treatment that
were either free or low-cost. I relayed the information to Rebecca, who was devastated to learn that she would have to leave the state to get treatment and that there weren’t any other options to help access treatment either. She, like many others, was stuck without access to the care to save her life.
The current rates are recovery for people with eating disorders are split into thirds. Twenty percent will die either from medical complications or suicide. The other twenty percent will get somewhat better, but even with treatment will remain chronically ill with their eating disorders and sixty percent will fully recover. I do not know which category Rebecca belongs to, a part of the story that doesn’t have an ending. I left the website we chatted on to volunteer elsewhere. When I returned to the site to check on her, all of our conversations and her username were gone. I do not know her email address, phone number, or social media profile.
The lack of closure sticks with me to this day. It does seem in a way to describe recovery from an eating disorder, a topic of hot debate among professionals. Some professionals and individuals with
eating disorders describe themselves or clients as “recovering”, as in recovering anorexic, for example. Others prefer the term "recovered” to note that an eating disorder no longer affects them.
Relapse is another unfortunate aspect of an eating disorder or any type of major psychiatric illness really, it means that recovery is not achieved yet and the journey isn’t complete. It typically occurs when one experiences a major change in their life, like going away to college or becoming a parent. The eating disorder and its symptoms resurface and attempt to regain control.
Control is another aspect of an eating disorder and a part of my story. Eating disorders can be a conscious or unconscious attempt to gain control of an otherwise out-of-control situation. They are a
way to cope. Later, in 2017, I would find my own way to cope with the uncertainty of what happened to my friend. I would reach out to the eating disorder helpline again, but this time was different. This time, I would be reaching out to volunteer in honor of Rebecca in order to learn more about eating disorders and how to help. I learned about the work involved in finding treatment and support groups; the inspiration for this site.