My Story of Chronic Illness and Eating Disorder Recovery
**This is one person’s story. Everyone will have unique experiences on their own path to recovery and beyond. Some stories may mention eating disorder thoughts, behaviors, or symptom use. Please use your discretion and speak with your therapist when needed.
Sarah Noelle Churchward discovered her love for writing at the age of six when she wrote her first book, “The Castle” which found great success with her family and teachers but never gained wide-spread success. Sarah dove into another one of her passions at the age of 15 when she became a professional makeup artist in the state of Washington. She has worked with Macy’s fashion shows, The Snohomish Historical Society’s Annual Zombie Walk, and many other freelance organizations. Taking her career in a slightly different direction, Sarah launched her own line of cosmetics at the age of seventeen. That same year, she started her blog, Thought Outlet, discussing passionate topics across the board. In February of 2018, Sarah ran into health issues and is currently taking a hiatus from school and work, she hopes to resume those endeavors as soon as possible.
Body image is often a complicated issue during recovery, unhooking one’s self-worth from their size/shape/weight/ etc., is one of the hardest and most essential steps towards a happy and recovered life. Media portrayal of eating disorders often focuses on the desire to look a certain way, with an underlying message of vanity and shame conveyed loud and clear. This appearance-based way of looking at body image only tells one part of the story.
I’ve struggled with body acceptance for many years, but the event that pushed me from having an unhealthy relationship with food/body to having an eating disorder was the last thing I expected: a rare brain disorder diagnosis.
It was May 2018 when I got the call confirming that I have Narcolepsy with Cataplexy. Essentially this means that when I experience strong emotions, my body collapses into a state of paralysis for a few minutes where I am fully conscious but unable to move or communicate in any way. If you are unsure of what narcolepsy is or what I was experiencing you can refer to this comprehensive guide or my personal blog.
Roughly six months after being diagnosed, I was admitted to The Emily Program’s Partial Hospitalization Program. Narcolepsy presented many unique challenges during my time in treatment and as my frustration snowballed, so did my symptom use. The feeling of isolation grew daily as I listened to other group members talk about their difficulties together, offering suggestions and support. I struggled to understand why I felt so separated from the people around me, everyone was welcoming and kind, yet I still felt disconnected.
The days rolled on like this, I barely noticed the growing anger building inside of me. That’s when I realized: I’m in an abusive relationship with my body. From my perspective, she betrayed me first. She’s the one that doesn’t work. Narcolepsy is not an excuse to be weak, I told her. The more I fought the symptoms, the worse they got. Forced into accepting a reality I couldn’t have dreamt up, I searched for a way to take back control over my life. I only saw my pain and I was lost in it, I needed a way to make sense of the endless tests and hospital beds. I needed to have someone to point my finger at and scream, “You stole this from me! You stole everything from me!” And my body was the only one there.
I could tell that I was going to pass out and I would stay standing just to get back at my body for betraying me. I didn’t see the bruises or the sunken skin. I was blind to the weakening muscles and increasing sleepless nights All I looked at was my loss. The loss of my freedom, my independence, my ability to drive, my dreams. We tormented each other, breeding nothing but hate. Instead of comparing thighs and stretch marks, I compared my inability to regulate sleep-wake cycles and whether or not I needed my wheelchair. I hated my body not because it didn’t look the way I wanted, but because it didn’t function the way I wanted.
Sometimes hating my body isn’t about wanting to be skinny.
Sometimes self-harm isn’t burns and blood.
Sometimes starving myself isn’t about my appearance.
Because I’m in an abusive relationship with my body.
Because my sense of control over my life was ripped away from me.
Because the anger that is born out of ignorant comments needed to go somewhere.
Because there was nothing else to do while I was laying there in pain.
Because my list of questions grows day by day and I needed answers.
Anger is just passionate denial and denial can never breed truth, the truth is that while I was suffering the truly devastating power of a chronic illness and mourning the loss of seemingly limitless choice in my life, my body was suffering alone. As emotionally challenging this year has been, it has hurt me physically as well.
Two concussions, three torn muscles, an unfathomable number of blood draws, IVs, spinal taps, electrode welts, medication side effects, gravel imprints on my face, full body spasms, bloody noses, allergic reactions, hypothermia and sunburns from being paralyzed in the elements for too long. My body has also been through hell. And despite that? My body is doing incredible given the circumstances, she does her best to walk when she’s able and she can still give tight hugs and can still feel the sensation of ridiculously soft blankets and she is working so freaking hard to be strong.
My body is amazing. My body has spent 18 years extremely sleep deprived and still grew into a remarkable human who can’t do some things but can do hard things. Unique things, fun things, crazy things, normal things, impressive things. I had to reach out first, I had to apologize and show myself that I deserve nourishment. That I deserve to sit down and I deserve to ask for rest when I need it. It started slowly, but day by day the tension between us started to fade. And my life seemed to get a little bit better, which is funny because nothing about my situation changed.
I didn’t stop having Cataplexy or sleep attacks. However, things seemed a little less scary when I didn’t have to do it by myself, when me and my body started working as a team I realized that we are two parts of one incredible, smart, hard-working, and resilient person. My disability doesn’t determine my worth. Just like the size of my waist doesn’t change who I am.