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A mother’s experience with her daughter’s eating disorder

By Kali, F.E.A.S.T. Volunteer

When your child has shown serious signs of disordered eating and goes off to college, you are not really sure what is going to happen. Things might go well for her, or they might not.

Your daughter goes off to her dream university with a generous scholarship. Your beloved, amazing daughter, who has always had friends and interests, and is beautiful and a little too perfect, but who you always believed had only the most unquestionably bright future in front of her–that child becomes critically ill the first semester of freshman year. You find yourself in emergency mode, driving to pick her up after frantically throwing some hefty bags and boxes in your car, and bringing her home on a medical leave because she is suicidal and self harming and has been diagnosed with anorexia nervosa, binge/purge subtype. You help move her out of her cute dorm room, and bring her too tiny jeans home, and sadly remember the optimistic shopping trip you took together to Bed, Bath and Beyond to buy her first living-away-from-home items for her new-grown-up-life. You drive home at night, digging your fingernails into your palms to keep awake at 3 am, while your emaciated, vanishing daughter who suddenly seems like a stranger sleeps an uneasy sleep next to you. You drive 65 miles an hour down the highway into an uncertain and frightening and heartbreaking future. But you don’t really know how heartbreaking or how difficult it will be, yet. Or that you will fight against this eating disorder for many years and sometimes it will feel as though you are fighting your daughter because the illness won’t let her understand why she needs to weigh enough and eat enough in order to help kick the eating disorder to the curb. It is still the beginning and you are still a little innocent.

A year ago, you were buying her a nice outfit to wear for her college interviews. You watched her win academic awards at her high school, get her braces off and go to prom looking like a princess. Now you drive her to an eating disorder psychiatric institute, and she will stay there behind locked doors for 3 months while she learns how to eat again and receives enough therapy to last several lifetimes, in order to try to quiet the demons in her head screaming at her that she is fat even though in reality she is frighteningly malnourished. When you leave her there in the florescent lit hospital corridor with the doctors and therapists, nurses, dietitians and psychiatrists, you wonder whether they can put the pieces of your broken daughter together again and back to some semblance of herself. You read that eating disorders have the highest mortality rate of any mental illness and that only about a third of people who suffer from anorexia nervosa make a full and lasting recovery. You learn that these serious and life threatening diseases receive the smallest dollar amount of research funding of any mental health condition.

Your daughter is in a world of indescribable pain and so is the rest of your family. You soon learn of her secret life and the lies and the symptoms that she had been hiding from you during high school while pretending to be that perfect daughter who you thought you knew, until things spun so far out of control when she left home and stopped eating that she could no longer manage. You learn that these are biological brain disorders with metabolic and genetic underpinnings, and that families are not to blame even though you still look for reasons to blame yourself. You continue to get up every day and go to work and visit her in the hospital while her brain starts to come back online again after the period of starvation, and you attend family therapy sessions where you try to envision a life after the hospital and what it will be like and what you need to learn in order to help her get well again. You go on a self-inflicted crash course to learn about eating disorders and read every book you can get your hands on. You watch a video about what to do and say during mealtimes. You reach out to other parents experiencing the same thing on a message board and feel supported and comforted. You feel relieved that your daughter is safe behind the walls of the hospital and that the program is very structured and serious about refeeding her. You feel calmed that she is cooperating with the doctors and eating her meals and going for walks on the hospital grounds and making friends with some of the other women there and that there are a lot of visiting hours. But you also feel that you have blundered into some sort of nightmare you can never fully wake up from and you are numb and you cry a lot and isolate from your friends and family because, well really, who could ever understand this?

After leaving the hospital, stepping down in treatment to an outpatient team, and having support at home for her eating accompanied by many challenging steps forwards and backwards, she tries college again. And you wish you could be like the other empty-nester moms who worry about what bus their child will take home for break, or whether their kid has enough storage in their dorm room, or whether they will meet lasting friends, and where they can order a cake in the neighborhood for their daughter’s birthday, and if they will do well in their classes, and did they fill out the FAFSA correctly and when is it due. Instead, you visit your daughter often and try to encourage her to be motivated to be recovery minded. You eat meals with her and take her food shopping and watch for any signs of the anorexia creeping back in; and when your stomach clenches because you see that it is still there, lurking, you do everything you can to keep encouraging her to eat and weigh enough and stay the course in treatment. And you applaud all of her successes, small and large, because she worked so unbelievably hard to be able to be where she is right now. Because those SAT’s, ACT, and AP classes she took and those grades she earned in high school were easy compared to the real work she had to do in order to be able to be this college student now and to move ahead with her life. And you forgive anorexia, and you forgive your daughter for her outbursts and food refusals and emotional dysregulation, and you forgive yourself for what you didn’t do to cause this; and most of all, you forgive the universe for sending this terrible, terrible thing into your lives.

Don’t ever give up hope. Just keep going, one meal at a time.

In the years since these events, the writer’s daughter has continued in outpatient treatment and although there have been some ups and downs, her daughter has also been able to travel, has close relationships with friends, has graduated from college and has been successful at her job. But most importantly, she has been able to learn to eat independently and is in recovery.

 

 

 

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6 Comments

  1. Daryl

    A beautiful, raw, honest, & painful account of your experience. Really no one can prepare for what an eating disorder can do to a loved one and a family. Sharing your journey will no doubt help others, and most importantly will give hope that recovery is possible.

    • Lisa B

      Kali, I remember those early days just as vividly! Thank you for sharing your journey. It is so helpful to know we walk this road with others who understand ❤️

  2. Katherine

    I have such a mix of emotions when I read this. Every step on our journey has had to happen to help my AN d get to where she is today. A do over would not have changed things. So we take each day as it comes and heal and grow. No other option makes sense. Thanks for your story.

  3. Jennifer Lesinski

    Thank you for sharing your story. I found it comforting and hopeful–which I needed right now. Your story is so very similar in many ways to ours and we are at the beginning (only a few months into treatment) with my daughter who is 20 years-old and was diagnosed at the end of her second year of college, communting from home. When she is ready, she will go about an hour away to finish her studies. I know I will be as scared and want to visit often as you mention. And, my fears will be different than my friends seeing their young adult children go away to college for the first time, as you say. But, that is at least 6 months off if not more–taking one day at a time. For now, I am just counting the days until she comes home from a residential program, where she is getting treatment many states away from our home. Thank you again for writing this touching,genuine piece.

  4. Cathy

    We went through the anorexia battle with daughter through college years and beyond. Biggest mistake was not to take relapse prevention seriously enough. Daughter went through the variety of treatment levels/programs and maintained a good weight for 7 years until a family member’s struggle with cancer and then his death resulted in daughter’s relapse. Wish treatment centers would be more explicit about what relapse prevention should look like.

  5. Julie Montal

    Dear Kali,
    your stream of consciousness, your relating of so much living and caring through the grips of the illness, shows your strengths. It is more difficult than you can explain, to “forgive” it for so much it takes away…and yet you do. Bravo and thank you FEAST for sharing …

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