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.
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.
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