I sit here, at almost 38 years old, reflecting on the years that have shaped who I am. Have you read Steven Levonkron’s book, The Best Little Girl in the World? That was me. Parts of me still have that inner child, but I can now speak from a more mature, seasoned soul who has done an immense amount of self-reflection.
As an eight and nine-year-old I would question the size of my body. I always focused on my stomach, both what I saw in a mirror and how it felt. I felt and thought I looked bloated all the time. I kept these thoughts to myself. At age 12 I began correlating food and appearance, hand in hand, and I wondered if these adolescent tween thoughts and feelings were “normal”.
On a trip with five families to Costa Rica, I ate only fruit the whole trip. One of the parents with our group came over and grabbed food off my plate unannounced, and I was absolutely mortified. I felt like my private personal space was interrogated. It was as if the food I actually allowed myself to eat wasn’t in my control. But I had no voice. I wanted to yell at that woman, I wanted her to know that the fruit on my plate was something I looked forward to each day.
My lack of voice
Looking back, I would have given my younger self advice to open up and use my voice. “For goodness’ sake girl, just say what you feel!” “Express your thoughts!” “Nothing can improve if you don’t just open the ‘F’ up.” But my inner voice was my own and it was as if I held it sacred. Sharing my thoughts and emotions would make me vulnerable. Someone may think I was crazy. “Do other people think like I do?” I would ask myself constantly.
Looking back, the thought of sharing my sacred internal emotions aroused fear of how those around me would react or respond; I feared hearing a response or reaction I wouldn’t want. “You’re okay”, “You’re crazy”, “What on Earth is wrong with you?” were the reactions I anticipated and feared. I admit that I still struggle with this today and you are probably wondering, “But why? What’s the worst that could happen?” The feeling of disappointment, finding out I wasn’t enough, hearing someone tell me how I’m supposed to feel or think instead of how I thought and felt, was (and in many ways still is) traumatic.
Now, as an adult, I know better. I know how to prelude and preface when I talk to people to set up a conversation starting with, “I’d really like you to just listen to what I am about to say and not respond with a way to fix the situation, I just need to vent…”. I now know how to set boundaries, and I know that I can walk away…but as a teenager, I believed I lacked the independence to have my own voice and to be the “me” I was desperately trying to find.
My anorexic chapter didn’t happen overnight, it evolved along with me while I evolved. Was there something the right people in my life could have said to me during this time to prevent what was ultimately going to happen? Some days I’d say, “Yes,” but the only way would have been for people around me to be mind-readers and we all know that is impossible.
Doing the work now with EFT (emotionally focused therapy) I am learning that I put band-aids on my wounds and they never truly healed. I’m doing the work now that I desperately needed to do when I was younger, but here is the thing, it would have been impossible to do what I am doing now back then. As a young teenager, I wasn’t emotionally mature enough to understand what I know now. As a young teenager I wouldn’t have been able to allow myself to feel through the really hard feelings I am now, and I sure couldn’t rationalize everything the way that I can now.
A little about my diagnosis and treatment
I was a Freshman in High School surrounded by wonderful friends, receiving a phenomenal education, and in a great family. One would say, “So what gives?!” I’ll never be able to tell you if my unhappiness was caused by my anorexia or if my anorexia caused my unhappiness. My doctors said they went hand in hand. I think my anxiety, ruminating thoughts, and my striving for control were the forerunners of my anorexia.
Freshman year I recall seeing a banana — I usually would grab one for breakfast on my way to school — and making the choice to skip it. I pretty quickly began making goals (I would think of them as rules) to achieve. For instance, I wouldn’t allow myself to eat until 5pm, but after 5pm I could eat anything that I wanted (which is why I hate the term “intermittent fasting”). After only a few days of this behavior I found a book (now out of print) on pro-anorexia and it provided guidance in making my mind stronger than the hunger in my belly. “Why eat all this for dinner just to waste all the work I’m doing before 5pm?”
At age 14 my anorexia really began to make an impact. My friends at school notified a school counselor because my jeans on my once normal frame sagged. My friends watched me eat lettuce and balsamic vinegar off the salad bar day in and day out. They saw me chew the same half piece of gum the entire day and place it gently on my plate for me to re-chew to save calories from a fresh piece. My lifelong pediatrician started weighing me regularly and watched the scale go under 100 and continue to dive. My pediatrician and school counselor collaboratively recommended outpatient treatment at Strong Memorial Children’s Hospital with a doctor named Dr Kreipe who had a nickname Dr Creepy. I met his entire team of doctors and I questioned why they were all pretending I was sick, what were they thinking? ME?!
At the outpatient clinic, doctor after doctor spoke to me with great empathy; they spoke in a way I don’t know that I was ever spoken to before. They seemed to genuinely care about my health and well-being in a mindful way instead of an interrogative way like everyone else had been for weeks. They spoke to me about anorexia, a disease I had learned about in seventh grade health class but never discussed since. Our seventh-grade teacher had shown us an outdated video of a girl hospitalized for choosing not to eat. I thought to myself, “If I ever have that when I get older, I’m going to allow myself to eat doughnuts! All the doughnuts!”
After routine medical visits and my weight continuing to dwindle, I was given one weekend to show Dr Kreipe’s team that I could and would eat. Instead, I couldn’t emotionally handle everyone telling me what to do (I hated that!) and I ran up and down the 120 steps at my lake house in the Finger Lakes.
I returned on Monday to Dr Kreipe, and he said, “Jess, you have lost more weight and today we are admitting you as an inpatient. Your vitals are not well enough to go home and we need to monitor you.”
The treatment team took my blood and it trickled out; they couldn’t get enough. They took an electrocardiogram and said my heart was working hard but was so weak that if I went home instead of being admitted, I’d most likely have a heart attack. They said they also didn’t know if the malnourishment would prevent me from having children one day. Nothing scared me. I believed this was Dr Kreipe’s grand scheme to fake it to make me scared.
Once admitted into the hospital, I played games from the beginning. I had mastered what I considered my craft. They couldn’t make my inner child speak and they certainly couldn’t control what I had worked so hard to achieve (control over my food and intense exercise). I had to earn privileges and was stuck in my hospital bed until I “gained weight.” I quickly learned the requirements and did many things:
I would look at other patients in the ward and think, “Ew, if they think I look THAT skinny, they’re crazy. She is GROSS, I actually look normal. Even at (a very low weight), this is just my build.”
I missed my brother’s high school graduation because I was in the hospital. I missed seeing my ailing grandmother who ended up dying while I was an inpatient. I was hospitalized for 31 days and released once I reached a weight in the mid 90s range. I remember going home and getting on the scale so proud because I actually weighed several pounds less. I thought I fooled everyone. I thought, “See, I am healthy at this weight, I’m different than they think.” I was re-admitted only a month later for another 30 days.
I was starting to get tired, really, really tired. It was as if I had reached a fork in the road and I could either keep going to reach my unhealthy goals and die, or I could give in and surrender. At the time, I wasn’t ready to give up my anorexic ways, but I was ready to become vulnerable and open up and use my voice…my very tired voice.
We tried family therapy and I tried individual therapy only to be told by my then-therapist that she had reached a point where she felt she couldn’t help me anymore. I thought people around me were making this all out to be worse than it was and this specific therapist just was sick of going in circles with me. I don’t think I truly realized the internal emotional pain I was in…but I realize it now when I look back. Only after becoming a mother and having all three of my babies (two years ago), living through a pandemic and quarantine with three children under six, and being reminded of not feeling emotionally supported the way I wanted and needed to be, I started to re-live some of the trauma of my upbringing.
I have reached acceptance that some conversations with people closest to me felt traumatic. I always thought trauma meant being abused, in a car accident, losing a loved one, but I now know that trauma, for me, can mean any feelings and/or incidents that linger. At different points in time, I’ve blamed myself, I’ve blamed my father, my mother; I’ve blamed adolescence, too.
Anorexia isn’t any person’s fault
My hope is that you read this closely: anorexia isn’t any person’s fault. It’s a conglomeration of experiences, thoughts, and pent-up feelings that accompanies what the patient with anorexia and those around her collectively bring to the table. In my case, it was not having the tools I so desperately required to use my inner very vulnerable voice.
Friendships have always been important to me. My grandma always said, “If you have one true friend in life you are lucky.” My best friend, Deborah, basically held my hand through every single step of my journey since first grade; we always had each other’s backs. Emotionally, Deborah was by my side through all of my anorexic woes without question. I was so appreciative but anorexia made me appear selfish. I never said thank you. I never told Deborah she was the only one who made me feel emotionally safe without judgment. She was and is my soulmate. It pained me she was missing out on her adolescence while visiting me in the hospital and engaging in many endless conversations. She wanted me to know I wasn’t alone. She was strong, she tried to understand, but there was no understanding and one day, she got so tired that she needed to put herself first. She stepped away; she had to. I admired her and used her actions to empower me to do the same. Watching someone else that you look up to take care of themselves is powerful. When the timing was right, we reconnected post-college, thankfully, and both agree we will share a unique bond for the rest of our lives.
I ask EVERYONE involved in eating disorder care, to:
1) Stop blaming yourself. Stop blaming the patient.
2) Be more open minded, you don’t know everything even though you think you do.
3) LISTEN. This is a hard task but be a better listener.
4) YOU cannot fix someone. They don’t need fixing, they aren’t broken.
5) Breathe.
6) This definitely didn’t start overnight so don’t expect the situation to improve overnight.
7) Get the patient emotional support, get yourself emotional support.
8) As hard as it is, look at HOW you speak to your children. It’s your voice that they are going to hear when they are grown and making decisions for themselves.
9) Explore mindfulness, it helps with being less negative.
10) Do not vent about your own feelings about the current situation to the patient.
11) Work with your spouse or partner as a TEAM, instead of pointing fingers. Work with a couples’ counselor and your own therapist. DO THE WORK.
Reference
The Best Little Girl in the World by Steven Levenkron, Grand Central Publishing, 1989.