Dear family, friends, healthcare professionals, teachers, and coaches:

          Please be my hope holder. I have eaten food out of trashcans. I have stolen food. I feel horrible, disgusting, and oh so ashamed. I desperately need you to believe in me, because, honestly, sometimes I think that I’m going crazy. My world is spinning out of control, yet, amidst this inner turmoil, I somehow look okay.

          You can’t tell how I’m doing by looking. Sure, I wear a smile, and, my resume seems to indicate that I have a bright future ahead. Physically, I even “look normal,” friends say. I might not appear sick or malnourished, but I am. A body size isn’t an accurate barometer for pain and suffering. Neither is an official eating disorder diagnosis or lack thereof.

          I’m more than a diagnostic label. While 1 in 200 adults in the United States have experienced full-blown anorexia nervosa, bulimia nervosa, or binge eating disorder, at least 1 in 20 (1 in 10 teen girls) have suffered with key symptoms—and need help. Not every eating disorder fits neatly into a little diagnostic package. Lesser-known eating disorders are not less than. In fact, Other Specified Feeding or Eating Disorder, OSFED, can be just as serious, or more so, than other eating disorders. No matter what diagnostic code my insurance company denotes by my name, I deserve recovery. (Sometimes, I need you to remind me of this.)

          Recovery feels backward. Imagine trying to do everything with your non-dominant hand. If you are right-handed, write with your left hand. This is how uncomfortable, how unnatural, recovery feels. As strange as it may sound, bingeing, purging, and restricting have helped me to navigate life. Eating disorders serve all kinds of purposes, including coping with anxiety, avoiding underlying depression, and pushing down past traumas. In this way, an eating disorder isn’t about food at all. Paradoxically, to heal, food is the best medicine.

          I can’t “just eat.” This is why I need help from experts. Something as seemingly simple and biologically driven as fueling my body (babies do it) feels impossible. I can’t just eat any more than a cancer patient can magically make dangerous cells just disappear. An eating disorder, like cancer, is a life-threatening illness that requires immediate attention.

          I might refuse help. I don’t want to be a burden. I feel guilty for spending money on treatment. Not to mention, I don’t believe that I am sick enough to deserve help. (Remember how I said that I’d need you to remind me that I am indeed deserving.) If my eating disorder were just a phase that I could stop, I would have by now. I don’t like to admit it, but I am still just a kid. I am a kid with a starving brain, one that can easily lose sight of this whole recovery thing

          Full recovery is possible. Apparently, I wasn’t born with an eating disorder but rather traits that made me vulnerable. I am learning that these traits, like perfectionism and persistence, aren’t inherently bad, but that I can use them for good. Being perfectionistic means that I am motivated and driven. What if I could use these beautiful traits in the service of recovery—and life—rather than my eating disorder?

          Recovery can bring us closer together. We hear a lot about how eating disorders tear relationships apart, but we don’t hear enough about how recovery can bring people together. You didn’t cause my eating disorder, but you can do a lot to help me get better.

          It’s not your fault. Nothing you did—or didn’t do—caused my eating disorder. Fifty to 80 percent of eating disorder risk is genetic and heritable. Add this stat to a culture that celebrates eating disordered behaviors (think dieting and over-exercising), and it’s no wonder I developed the illness— and that it hid for so long, from all of us. I’ve actually received compliments for having the psychiatric illness with the highest mortality rate, praise for killing myself. It’s all very confusing.

          You don’t have to understand. What my eating disorder drives me to do and say is hard for even me to grasp. What I need from you are love and support. I need you to believe me. If I say that I hate my body, I need for you to truly listen rather than reassure me over and over again. (You have probably noticed that doesn’t work.) Consider saying something like, “I believe you. I don’t understand what that’s like, but I’m here for you.” When in doubt, ask, “How can I support you?” Please keep this dialog open, because starting the conversation myself feels scary.

          Have patience with me. I might yell at you. Even if you say something inspired and helpful, something that I asked you to say, I might get upset. I’m more irritable than ever. This isn’t about you. I’m mad at myself. I’m mad at my eating disorder, which I am learning, in therapy, to personify as “Ed.” Much of the time, I can’t tell the difference between my thoughts and Ed’s. It might help for you to try this therapeutic technique, too: separate me, the person you love, from the eating disorder—the one who yells and pushes you away.

          I need you. Ed doesn’t like me to need people. This is similar to how, at times, he tells me that I don’t need food. At other times, I binge and purge people just like I do with food. But, beneath Ed’s lies, I do need you. I thank you.

          Beneath my eating disorder, I’m still here. Sometimes, you might think that the person you used to know—the “real me”—is gone. But, I haven’t gone anywhere. I am more than my illness, and I am learning more about who I am every day. No one would choose to have an eating disorder, but I am beginning to see the gifts of recovery emerge. Finding my voice is one.

Love,
Me
P.S. Many years later, as an adult, I can finally say: full recovery is possible!

A Senior Fellow with The Meadows and advocate for its specialty eating disorders program, The Meadows Ranch, Jenni Schaefer is a bestselling author and sought-after speaker. For more information: www.JenniSchaefer.com

Special Note from Jenni: I would like to thank my incredible community on Facebook, Twitter, and Instagram for providing key insights for this article. This post would not exist without all of your heartfelt comments. I am forever grateful for your support.

References:

K. L. Klump, J. L. Suisman, S. A. Burt, M. McGue, and W. G. Iacono, “Genetic and Environmental Influences on Disordered Eating: An Adoption Study,” Journal of Abnormal Psychology, 118 (2009): 797–805.

K.T. Eddy, N. Tabri, J.J. Thomas, H.B. Murray, A. Keshaviah, E. Hastings, K. Edkins, M. Krishna, D.B. Herzog, P. Keel, D.L. Franko, “Recovery From Anorexia Nervosa and Bulimia Nervosa at 22-Year Follow-Up,” Journal of Clinical Psychiatry, 2017 Feb; 78(2): 184-189.

J. J. Thomas, L. R. Vartanian, and K. D. Brownell, “The Relationship between Eating Disorder Not Otherwise Specified (EDNOS) and Officially Recognized Eating Disorders: Meta-analysis and Implications for DSM.” Psychological Bulletin, 135 (3) (2009): 407–33.

J. Thomas and J. Schaefer, Almost Anorexic: Is My (of My Loved One’s) Relationship with Food a Problem? (Center City, MN: Hazelden 2013, 2013).

M. Strober, R. Freeman, C. Lampert, J. Diamond, and W. Kaye, “Controlled Family Study of Anorexia Nervosa and Bulimia Nervosa: Evidence of Shared Liability and Transmission of Partial Syndromes,” American Journal of Psychiatry, 157 (2000): 393–401.