I watched my daughter die slowly, painfully, and alone due to anorexia which hijacked her life. There were no options; no hospital would admit her unless she wanted to be treated, she refused (she had no idea how close to death she was, her heart could stop at any time.) Counselors could not meet with her because she refused to follow their recommendations, EMTs could not take her to the hospital because she knew who she was, how old she was, and where she lived. My only option was to take her kicking and screaming to the Psychiatric Emergency, which would have killed her or love her on her terms, she could not recover on her own without a full team.
I am an unwilling expert by experience, my 20 year ED journey has been wrought with sadness, frustration, anxiety, grief, isolation, confusion, sheer disbelief, feelings of hopelessness, no support, shock at a system that says; “she has to want to have treatment”. What? She cannot make a decision on what her next snack should be, how can she make the life-saving decision to accept treatment; I would later learn this meant, “failure” to her. Is this the thinking of an individual who can process all aspects of their situation? I think not. So my lived experience has been to watch a system fail, time after time, and try desperately to support my beautiful daughter as her physical, emotional, and mental health slowly slip away over 2 years and be powerless to intervene. This was the child I brought back from the depths of anorexia at age 11, where again the system failed. She was in strong recovery for 8 years, only to fall through the cracks again, sick enough???
My true joy is being her mother, she was a shining star who lit up the room with her energy, she was a project manager at JP Morgan, people joked she was the next Jamie Dimon; yes, that was her trajectory. Then Wham; ED was back with its insidious dominance hijacking her brain taking control like a terrorist allowing her to work but every other aspect of her life slowly, ever so slowly crumbled apart until only a shadow of herself was left. Connection with friends slowed, connections with family became less and less, travel ceased, her activities became very limited, she was no longer dancing around the room, every moment was calculated and her thoughts were consumed by the constant chatter in her head. It is a terrifying thing when EMTs tell you there is nothing they can do, treatment teams say they will not take her and the individual will not voluntarily seek help, counselors will not continue because she will not take their advice to seek care; NO One is left. Those who are left are terrified, you feel abandoned, you have nowhere to turn; you can see the shadow of ED in her eyes, in every inch of her being. You wonder if this is her last breath, she reassures you she is fine, she is not going to die. And then you wait, you wait for the phone call, as much as you hope for a miracle, you know; it is in God’s hands.
What I know now is things are changing, things are slowly getting better. But we are so far behind, research, treatment, training, understanding, too many myths prevail; 100 years behind where we should be. No one should die from an eating disorder and yet every 52 minutes another loved one is lost to this insidious disease. We also know that there is an exponential increase in diagnosis, parity is not universal, misdiagnosis, marginalized groups who live in silence and medical professionals do not know how to treat eating disorders. And yet, there are known protocols that work, treatment, and management plans that are very successful. It takes a team, it takes time, and step-down treatment; sorry 14 days is not enough to heal body, mind, and spirit that has been ravaged. YES, we know how to save lives. It is not a pill, I ask; are we brave enough, are we brave enough?
Ellen Bennett 1/21
Daughter, Katie Bennett, 1988-2013; age 25.