My "Awareness Story" (February 26, 2015)

If you were not already aware, February 22-28 was National Eating Disorder's Awareness Week (NEDAW). I’ve made it clear to those who know me that I absolutely hate NEDAW because I feel like NEDAW and those who post in honor of it do a fantastic job of misrepresenting what an eating disorder is. Maybe I'm bitter, because if only my eating disorder was just about food and weight, if only it meant drinking weight gain supplements and reaching a healthy weight for me to recover, if only my eating disorder was as simple as NEDAW makes it out to be. I realize that there really are no words to describe the darkness that an eating disorder puts over you, but there must be a way to spread awareness without trivializing the disease. So I'm going to take a shot at sharing pieces of my story.

Many of my friends and family are aware that I’ve battled an eating disorder for several years. While I’ve been open about the fact that I struggle, I’ve never really shared openly what my battle consisted of. I want to share part of my experience with my disorder because there is this myth that eating disorders are about food, controlling one’s weight, and body image. While those have all played into my eating disorder at different points of my life, this myth is so far from the truth. There are no graphic details or photos representing my eating disorder, because I don't feel like it's necessary to share every detail of my personal story. My story shares raw information that I've never shared outside of group or therapy, so please be respectful of it. I choose to share because I have been through years of hell, and I have fought to be where I am now, and I am more proud of who I am becoming than I can express. I hope that my story may shed light on the disease and reduce stigma, as well as give hope to those who may be struggling.

From the time I was 12, I’ve engaged in eating disordered behaviors. I did the whole fasting/restricting then eating normally thing up until I was about 16 and a half. I remember the first time I purged I was only 12 years old. I still don’t know if I had an eating disorder at this time, but this was nothing compared to what escalated over the next couple of years.  

I’ve struggled with social anxiety since I was a younger teen, and had a hard time fitting in with my peers. I was insecure about who I was and who I was within my group of friends. When I was 16, my family was in a car accident, and my little brother was killed. This was a hard time for me and my entire family. I can’t speak for the rest of my family, but this experience still haunts me to this day. Not only the trauma of the accident itself, but from what escalated afterwards. Immediately following the accident, I took the position that I was going to be strong and be there for my family, and I wasn’t going to deal with the emotional pain, at least not while we were spending the days in the hospital and visiting my siblings. I used being strong and visiting my siblings, and exploring the hospital with my cousins, as a way to avoid the reality of what happened. I feel like from the start, I put up this façade that I was okay, and that I wasn’t emotionally torn from the experience. Because of this, I felt like I lost my opportunity to grieve, even following Jesse’s death. At the same time I was dealing with this, I realized that I really didn’t have friends in my life, and that I was alone. That was heartbreaking for me, to discover that the people that I thought were there really weren’t. Full disclosure: I did isolate myself during the months following the accident, and because I didn’t put myself out there, my perception may have been skewed. But that didn’t change the fact that I felt betrayed.

Following the several months after the accident, I started purging more frequently. At first it was just an every once in a while thing. But it quickly escalated into binging and purging on a regular basis. It quickly got out of control when I got my driver’s license. I was enrolled at the community college at this time, but I was too lost in depression and my eating disorder by this time to continue attending classes. Instead of going to class, I would spend those hours looking for places to buy food, and bathrooms to purge in. I remember wandering the aisles of the 24 hour Walmart at 2 in the morning, to buy food to binge and purge. The binging and purging didn’t last long before it got so out of control that I was afraid to eat at all. That led itself into full on restricting. When I was 19 I was diagnosed with anorexia, and I landed myself in Renfrew’s residential center in Philadelphia and was put on bed rest because I was too ill to be allowed to walk. I then transferred to their Intensive Outpatient Program, but got kicked out due to noncompliance. I hadn’t actively chosen to go into treatment at this time, and was not ready to recover.

Between 2010 and 2014 my eating disorder became intensified. My eating disorder stole years of my life from me. It put me in a deep depression and disallowed me to engage with the world. I lived in my bedroom and wouldn’t even engage with my immediate family. I would lay in bed awake for hours at night terrified that I wouldn’t wake up in the morning. I used to wake up with a paralyzing pain throughout my body, feeling like my heart and head was being crushed, but I couldn't move or make myself wake up fully from my sleep. Every time this happened, I thought this was it, this is what death feels like. Going to the grocery store was hell. I would wander the aisles for hours just to leave with a bag of carrots, and was humiliated because I knew people were watching me pace up and down the aisle, picking a box up and replacing it multiple time before I walked away. I would throw temper tantrums over the smallest things because my brain was so malnourished that I couldn’t use my judgment. I remember being 23 years old and throwing a fit and crying because there wasn’t coffee in the coffee pot when I woke up. Anyone who knows me now, knows that this is not who I am. I can acknowledge that I am a considerate person who is nice and pleasant to be around, I’m not argumentative at all. But my eating disorder changed me into a complete monster. On holidays, I became so terrified of relatives visiting that I would stack suitcases up against my door and turn out the lights so there would be no indication that I was home. I remember texting one of my siblings to have them bring me coffee so I wouldn’t have to leave my room. Guests coming over resulted in me cutting myself and crying in my bed for hours. I was so miserable I wouldn’t acknowledge anyone in my house. My mom would say Hi to me and I would completely ignore her. I had no hope for my future at all. I thought I was going to live with my eating disorder for the rest of my life, and never have friends or be good at anything because my life was me in my room with my eating disorder. 

Any eating disorder is different for everyone. And while body image may be a huge factor for some people, it really is only a slice of the pie (no pun intended). My eating disorder served as a safety net. I can’t do anything else in the world, I’m not going to succeed, if all else fails, I’ll just be miserable with my eating disorder. It’s a coping mechanism for all of my emotions. Sadness, stress, anger, they all fuel my eating disorder. Low self-worth is a huge component of my eating disorder, I have a hard time valuing myself as a person, and it’s hard to take care of someone that doesn’t deserve anything good (or so my mind tells me). All these things and more come together and create this barrier between me and food. And having been living in my disorder for years, it’s terrifying to live any other way. Every meal I eat is a conscious decision. Some days it’s easier than others, other days I literally pace back and forth for 10-15 minutes or lay in bed for an hour before I convince myself that following my meal plan is what I need to do. I negotiate with myself constantly – “you had starch for breakfast, you don’t need bread on your sandwich,” “you’re just going to sit in bed today, you don't need to eat.” After years living in my eating disorder, it’s scary to be around food, prepare food, and eat food.

All this being said, last January I went back into treatment at the Eating Recovery Center in Denver, transferred to Renfrew’s Day and Intensive Outpatient Program in Bethesda in April, and discharged from the program in July. I still continue to participate in their outpatient groups, along with appointments with my dietician, nutritionist, medical doctor, and a prescribing nurse. Choosing to go back to treatment was THE best decision I’ve ever made. I’m 25 now, and am learning what it means to live. While I still struggle, I am in such a better place emotionally and behaviorally than I can even remember being in. “I had no idea” it was possible to be happy again. Going back into treatment last January was my choice, and making the choice for myself made a huge difference. My first few months in treatment I spent a lot of time judging the program and not trusting my team, which definitely influenced my treatment. But once I completely let go and followed my teams recommendations, and was honest about the stuff that went through my head, I was able to really challenge a lot of my behaviors, and gain experience that has helped me stay in recovery. I have ups and downs, but overall I’m so blessed to be where I am. My relationships with my family and parents are great, and I can smile and have conversations with them. I’m doing things that I never thought that I’d be able to do, like living in a house with 8 other people, and eating meals around them. While I still question how much better things can get, hearing other people share their stories has given me hope that things can continue to get better. I hope my story has given you insight into what an eating disorder is. And if you are struggling with your own battle, I hope it gives you hope that you can recover from this life stealing disease.

Recovery is a process, and it won't happen in months, or even a year. Give yourself time, and be patient with yourself. Follow your team’s recommendations, because they are there to help you, and living in your eating disorder will only bring you misery. The first couple of months of recovery are sometimes the most painful, and it’s easy to want to go back to it because it’s easier. But as cliché as it sounds, recovery is worth it, and it will get easier.