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???

Today Katie would have been 32 if anorexia had not derailed her life, hijacked her life, stolen her life. However we want to say, her heart stopped beating on June 23, 2013, at the age of 25 due to anorexia. Anorexia ravaged her body for 3 years following 10 years of recovery.
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This journey is beyond understanding as anyone who has lost a loved one to anorexia; it is a brutal, tragic reality that occurs much too often. Anorexia has a 20% mortality rate!!! We need to start talking about this!

• 50% of deaths associated with Anorexia are suicide; please stop and think about that.
• Anorexia is almost 100% comorbid (my opinion), meaning there is also another complex mental health condition; anxiety, depression, substance abuse (drugs/alcohol, both), self-harming behaviors.
• Isolation, disconnection, denial.
• There are often personality characteristics that fuel anorexia; determined, intelligent, driven, successful, highly motivated and capable, perfectionism; to name a few.
• Anorexia is not a choice. NO ONE WOULD CHOOSE THIS.
• Anorexia, extreme restriction, causes chemical changes in the brain that make it impossible for the individual to make life-saving decisions. The brain is hijacked.
• Anosognosia, the individual does not recognize how sick they are or how compromised their body/organs are, even though they are at risk of organ damage or organ shutdown. They truly believe they are ok, that they are not in need of medical intervention. It is terrifying to have a doctor tell you that your child’s heart could stop at any moment, any moment. Our current system expects this individual to ask for or want help; they are incapable!!!
• Research, 2019 has determined that anorexia is a metabolic disruption as well as a brain-based disruption. This information is critical, it will change how we treat this disease going forward. We cannot expect someone in the depths of anorexia to make a life-saving decision; accepting treatment, asking for help. Treatment is not a pill; it is food, sustained nutrition working with a team who are compassionate and understanding, willing to go the long haul. The medicine, food, must be taken 3 times a day, and usually an additional 3 snacks each day. The very thing that will help heal it the thing that is most terrifying, most anxiety-evoking to a level that is painful, stressful, and scary.
• Doctors, nurses, technicians, dentists, counselors, dieticians. Psychiatrists, all medical providers must receive training related to anorexia and eating disorders; many still think it is a choice. Misdiagnosis, missed interventions happen every day.
• Early Intervention is the most important factor; that begins with knowledge and understanding.
• We live in a toxic culture that thrives on self-doubt, overwhelming social media input, body bashing, and criticism; all are triggers for negative behaviors, all triggers for eating disorders.