9 Years Later, My Mother and Sister Open Up About My Eating Disorder

Experts estimate that about eight million people in the U.S. are currently suffering from an eating disorder—and that’s not even to mention the long, arduous process of recovery nor the rampant misunderstanding of these issues in our culture. To increase awareness and perspective, our goal is to break open the conversation by featuring thought-provoking content on body image, diet talk, and the stigma and shame that millions of women deal with on a daily basis. For instance, here, a mother and sister open up about what it was like for them to experience their daughter and sibling in the throes of anorexia—uncensored, raw, and real.

Above all else, know that you’re not alone—and if you need help and don’t know where to begin, reach out to the National Eating Disorders Association hotline at 800-931-2237.

My Mother, Emma

"It's been nine years since our then-16-year-old daughter was diagnosed with an eating disorder. But even still, going back in my memory and recalling the doctor's words causes my eyes to well up. The physical reaction is visceral. It's not just the tears waiting to fall; it's also the act of fighting off the physical desire to still run to the bedroom, curl into a ball, and sob as I remember swirling words, haunting emotions, memories, and images. During the worst of it, my husband and I would take turns getting up at night to make sure she was still breathing. Would she make it through the night? What did we do wrong? How could we not have figured out what was happening sooner? How did this happen to our daughter?

"I remember the doctor telling us her heart rate was 38 beats per minute. That she needed to be hospitalized—immediately. I remember the anger and the pain. And I remember crying when we walked out of the in-patient center, forcing ourselves to do the most painful thing we’d ever done. Ignoring her crying, ignoring her desperate promises that she'd eat. And yet, she went through treatment, and she improved. Until she didn't."

"The following year, when she was going through out-patient treatment, we couldn't understand why her weight was going up, but she still looked so painfully gaunt. Then one day the nurse discovered she had been concealing weights underneath her gown before entering the examination room and stepping on the scale. It had been going on for months. Our daughter isn't a dishonest person. But her eating disorder was. 

"Sometimes, other memories before the diagnosis flood back, and oftentimes, there's a lot of self-blame. I remember the four-hour drive we took to a beautiful wooded resort town, how we cajoled her to eat an ice cream cone and wanted to cry when she didn't take more than a couple of bites. I also remember not wanting to go back home before taking 15 minutes to walk part of a trail and inhale the 'balm' of cedar and pine—a powerful, healing fragrance that's one of my favorites. I practically forced our daughter to come with me and weeks later, in the doctor's office, I realized she could have collapsed. There's also this one particular photo we have. She's walking with her high school dance team during a homecoming parade. It was cold, and all you could see were eyes peering out from a stocking cap. It's an image that will forever be burned into my memory. It was horribly haunting—and skeletal."

"I give thanks to my patient, loving, dedicated husband. I worked long hours and didn't arrive home until around 7 p.m. each night. He worked with our daughter every day when she'd get home from school—patiently, consistently, rigorously working, day by day through her detailed 'eating plan.' He fought when she didn't. There was ongoing resistance, and at the time, if often felt relentless. There was always an underlying feeling of hopelessness, confusion, and not knowing if our daughter would ever come out on the other side. When we'd attend family therapy sessions, we'd often see older women who had never recovered. Some of them had heart issues, fake or missing teeth, bald spots, and other serious physical problems. Would that be the fate of our daughter?

"Of course, we could never understand what had triggered the eating disorder. She had danced since she was little and done a little bit of modeling. Was something said to her at some point about needing to lose weight? Had a boy made a comment? Even after reading books on eating disorders, sitting through parent support groups, talking to nurses, doctors, dietitians, and parents of other patients, I still don't understand it. And if I'm honest, I don't think I ever will.

"Her treatment therapist didn't think she should leave for college, but stubborn as she is, our daughter insisted. We compromised and worked closely with the college health department, making sure she had weekly appointments to visit one of their doctors. If at any point her weight went below a certain number, she'd come home. However, considering our daughter's personality type (when her mind is set, she's unrelentingly determined), that kind of ultimatum was probably the best thing we ever did for her. In her mind, there was no way in hell she'd suffer the humiliation of being sent home from college. And so she wasn't.

"It was slow, tedious, and not always a straight path, but gradually—over a number of years—she's regained her health. She'd be the first one to tell you that she's still recovering—and it will never be an easy road—but I say prayers of thanks regularly that she's survived and thrived. Thank God the world didn't lose this beautiful being."

My Sister, Lily

"The best analogy I can think of is that having a sister with anorexia is like a long, lonely car ride on a twisting road enveloped by fog. The first, clear glimpses of the scenic overlooks and rolling hills you have been eagerly anticipating become unexpectedly obscured by mist gathering on the other side of the glass. Efforts to wipe the glass clean have no effect, because this is a fog beyond your reach. When you lean in closer trying to peer through, you realize it is only your own reflection and perceptions that you are seeing, no longer the beloved features of the sister you are looking for and that your own breath is only adding to the haze.

"You begin to imagine that you can hear shouts for help coming from somewhere on the other side of the glass you're looking at, but shouting and crying in return only surrounds you with echoes. You are seized with panic that you are hurtling forward with no way to see or steer clear of the dangerous obstacles in the road ahead. Your sister is receding rapidly into the distance beyond your grasp and escaping the car now feels hopeless. Suddenly, the faint outlines of a hilltop appear outside the window, and your spirits soar, only to plunge into the next darkened hollow. What you hoped would be a passing dark cloud has found its way into your heart on a permanent basis. Instead of pressing your forehead against the glass, you become afraid of what you will see if the fog melts away. So you turn your face from the glass."

"Will you see your sister still standing in the same place you last saw them, trapped in time, unchanged by the gifts of a journey you were supposed to have made together? What terrible things might have been happening while they were out of your sight, beyond your reach? What if the moments you turned away were the very moments you might have seen a sign on the road, telling you which way to safety? And the worst thought of all, what if they never, ever heard the banging on the other side of the glass, and thought you left them all alone?"

"In my story, the car did climb to high ground. I did get to see the beloved features of my sister gradually re-emerge, the sparkle in her eyes and inflection in her voice slowly return like warm sun falling through a window. She's not trapped in the past but continues to change through the process of healing into a stronger, more authentic version of all of her potential. She is an inspiration to me. I am eternally grateful to have this precious opportunity to journey forward with her in this life. There are times we still feel the effects of the distances she was traveling on her own fight.

"There are gaps in my children's memories of her, years where they felt that they 'lost' her, even when she was sitting in the same room, separated by the invisible isolation that eating disorders cause. There are many moments where I deeply feel that I don't know all the parts of her mind and memory that I would like to know in order to be a better, stronger, more helpful big sister. The most important thing is that we desperately, passionately want to rebuild those bridges, to strengthen her feelings of being connected by our love, to roll down the windows and shout, 'I love you!' again and again until the air is full of light and family."

For more mental health related content, read this story, called We're Not "Emotional"; We're Human: 12 Women Recount Their Last Great Cry.