Raising Awareness for National Eating Disorder Week
In honor of National Eating Disorder Week, I’d like to focus my energy on raising awareness about eating disorders, both through education, stories of my own history with an eating disorder, and coping skills for both people who are struggling and family members of those with eating disorders.
I’d like to start off slow—to ease you into my story and the complex topic and world of eating disorders.
I will start with a simple version of my story. A backdrop, if you will, for some of the more intricate and delicate parts of raising awareness and educating our communities about eating disorders and recovery.
Years ago, I was asked to speak at a National Eating Disorder Awareness (NEDA) fundraising walk about my story.
When writing my speech, I asked myself what I wish I could have heard as a young girl struggling with an eating disorder. What I wish my mother could have heard, so that she would know how to help me. What I wish strangers could have heard, so that maybe they could understand the complexity of my struggles.
I would have wanted to hear the truth, which terrified me because the idea of talking about eating disorders honestly meant I might not be giving people what they were looking for: hope.
This is the tricky part about eating disorders—in my experience, they get worse before they get better. They are like a parasite: their presence alone is painful and uncomfortable, but once we start to treat them, the pain becomes worse, almost unbearable, until our whole systems are cleared and nothing is left—not even the parts of our insides we need in order to be well. A whole rebuilding process begins from scratch, and it’s messy and wrought with setbacks, relapse, and discovery. It is not a linear process.
So when I thought about writing my speech, I knew that by simply telling the story of being recovered, I would be robbing my community of the truth, and that would be doing my younger self a disservice.
Young Rachel needed to hear that she wasn’t alone. That it was ok to fuck up. That if she tried to recover and it didn’t go well the first time, she was not a failure. Because as powerful as hope is, if we offer hope without the messy, dirty details of how we succeeded, we leave our youth and their families with the confusing and inaccurate message that success is easy. This perpetuates the perfectionistic tendencies of someone with an eating disorder, and reinforces the fear and belief that they will never be good enough, perfect enough, or right enough.
In 2005, when I was 15 years old, I was diagnosed with Anorexia. At that time there was so little discussion about eating disorders within our culture (outside of the occasional tabloid headline or celebrity weight loss scandal). For the most part, eating disorders were not spoken of, and support and recovery for those who needed it was kept quiet. As a result, my eating disorder and therapy was a secret for my entire high school career.
Even though it was physically apparent that I was sick, no one spoke to me about my disease, and I spoke to no one. Not a single friend, teacher, or family member approached me to offer support or asked if I needed someone to talk to. And conversely, I did not reach out to a single trusted loved one, peer, or adult.
Eating disorders just weren’t something people talked about.
I don’t blame the people around me for my eating disorder. But looking back, I wonder what the trajectory of my life might have been if someone had asked, “are you ok?” What if my peers knew more about mental illness, eating disorders, and how to talk to one another? What if I had known how to ask for help, or had the words and language to explain the feelings I was having?
Even now, after over a decade of experiencing mental illness and studying psychology in graduate school, I find myself fumbling when trying to ask someone I’m concerned about, “are you ok?”
Why is this? Why are we so afraid to ask one another, “Do you need help?” And why are we so afraid to ask for help ourselves?
Looking back, I know that changing my body was a way for me to physically display my pain. If I looked sick, wouldn’t someone notice? Wouldn’t they realize I wasn’t ok, without me having to say it?
For years this became a pattern. If I was struggling with fears of inadequacy, lack of self-worth, or crippling depression and anxiety, I would turn to my eating disorder. I never asked for help. I was too afraid that someone would think my emotions were too big or that I was overreacting. So instead, I made myself physically sick, because maybe then someone might take my emotional pain seriously.
I also believed that unless I was sick enough, I didn’t need treatment. I believed that if I wasn’t underweight, fed by a tube, or forced to go to treatment by concerned family members, I must not be disordered enough.
This twisted logic followed me for ten years, until I finally entered treatment in 2016. When I admitted myself, I was not underweight, no one except my husband had expressed concern, and the only feeding support I needed was on how the hell to know what a regular day of food looked like. To me, this was not desperate enough--not bad enough—not worthy enough of seeking help.
What I learned in my time at treatment was that I was enough. I am enough. I am worthy of help, support, and love, no matter what weight, shape, or size I am. I learned not to compare my struggles to anyone else’s. I learned to speak up for myself and ask for my needs. I learned skills that I desperately needed.
This was step one in my recovery.
There have been more steps than I can count on both hands in my road to recovery that followed. Re-wiring the part of my brain that believed I had worth was step one, and it took over a year to shift, change, and solidify that belief.
Since treatment, I have uncovered a lot of harsh truths around my eating disorder. About why my eating disorder developed in the first place. About what my eating disorder covered up or protected me from. About what it took from me and the grieving of those losses.
I have learned that my eating disorder showed up as a survival mechanism.
Before the birth of my eating disorder, I was already suffering. I already hated myself. I was already wrapped in a heavy blanket of anxiety and insecurity.
My eating disorder showed up in an attempt to protect me. To try and help me the only way it knew how: she made strict regimens in an attempt to soothe me from the chaos in my heart and mind. She thought encouraging me to change my body would coax me out of feeling worthless.
And because I had no better methods, I let her try and help. Because I didn’t have language or examples of how to express my insecurity, my anxiety, and self-loathing, I adopted her language and followed her example. I used the tools and rules she gave me to cope with the turmoil in my internal structure.
I didn’t know these methods would hurt me more than help me, because at first they didn’t hurt. At first, I felt a wave of relief. This relief lasted a few months—the resulting pain lasted 15 years. Even so, when I fell deeply depressed in college, when insurmountable insecurity arose from rejection, or when I felt paralyzing anxiety in grad school, my eating disorder came to offer her services.
Sometimes I still let her, because she was the first lesson I learned in how to ease panic or self-loathing, and in many ways that makes her the easiest tool in the box—but the short lived relief does not outweigh the damage our relationship has had on my life.
Four years have gone by since I entered treatment, and the invaluable lessons I learned in treatment have not left me. But more life has happened. More stressors have arisen, and again, my eating disorder has asked for a place at the table. I have absolutely relapsed. I have absolutely had disordered thoughts, behaviors, and urges since treatment.
But oh so much else has happened.
I have generated courage. Courage to talk about my eating disorder. Courage to educate others. Courage to be vulnerable and say, “no, everything is not okay right now.” Courage to tell my story and acknowledge that eating disorders are a real, life-altering problem, and we owe it to those who struggled in silence before us to start speaking up. To start educating our younger generations. To start giving them the opportunity and place to talk about their body image, their fears, and their self-worth.
I am not recovered—I struggle often, and daily. But I am better. I have more tools at my disposal besides my eating disorder. I have a support system. I have a community of strangers who are fighting for awareness. I have a voice. I have learned that just like life, just like me, just like you, nothing is perfect—not even recovery.
This is the trajectory of my hope. It is grounded in resilience. It is about trying, failing, and channeling all the courage I can muster to get back up. To look back at where I’ve fallen, and to see that I am still standing. To see how much I’ve learned and how brave I was for trying to get well in the first place. To see my setbacks and relapses as growth points, as learning opportunities—while remembering and honoring that growing hurts.
My hope lies in the awareness that our culture is bringing to mental health and therapy. The hard conversations we are willing to have with each other. The questions we are afraid to ask, but ask because we know curiosity leads to knowledge. And the more we know, the better equipped we will be to intervene faster. To build language around insecurity, anxiety, or low self-esteem. To give kiddos safe spaces and people to verbalize that language and be met with openness, love, and compassion.
My hope this week is to expand on that awareness. To add a small piece to the puzzle of education and more global understanding. This is my hope.