Why this Mom is championing World Eating Disorder Healthcare Rights
By Judy Krasna
The first time I took my daughter to a dietitian in 2008 after she was diagnosed with an eating disorder at age 15, we walked into the office together. The dietitian looked up from behind her desk and said, “mothers wait outside.” My daughter begged for me to remain in the room, but the dietitian was firm and would not allow me to stay. I sat in a chair outside of the office and listened to my daughter cry. I heard my daughter ask repeatedly for me to be allowed to join her. It didn’t occur to me to challenge the directive to stay outside, or to refuse it. Having been raised to respect authority, I politely did as I was told.
At the end of the session, after my daughter sobbed for 45 minutes straight, I was allowed back into the room. I was handed a copy of my daughter’s meal plan, and I was told that she was to be held responsible for eating all of the food on it. This made no sense to me, since if my daughter had been able to eat on her own, we wouldn’t be sitting in a dietitian’s office. For G-d’s sake, she had an eating disorder. However, once again, I remained quiet.
Week after week, as my daughter’s condition was rapidly deteriorating, I tried without avail to communicate with the dietitian. I tried to explain that my daughter could not eat on her own, and that our involvement would be beneficial. After all, who can possibly be more invested in a patient’s recovery than his/her family? On a logistical level, it made sense to involve my husband and I in our daughter’s treatment since we were the ones who were with her 24/7, the ones in the best position to provide care.
Family on trial
Motivated by fear and frustration, as my daughter’s weight was plummeting and her mental state was beginning to truly frighten me, I started to acquire the tools and knowledge that no one on my daughter’s treatment team thought to impart upon me. I turned to the internet and read all about Family Based Treatment (FBT). I discovered the concept of evidence-based therapy. When I asked about FBT and behavioral therapies, I was told “we don’t do that here.”
It got worse. During one of our early “family therapy” sessions, the therapist asked my husband and me, “how do you think you contributed to your daughter’s development of an eating disorder?” As if it were a given that parents cause eating disorders. Once again, I didn’t feel comfortable questioning medical authority, even though my instincts were screaming that this mode of therapy cannot possibly be effective.
The first year of my daughter’s treatment was rife with parent bias and marginalization. No one explained anything to us; we were totally in the dark. No treatment options were offered. We felt totally alone. All these years later, I clearly remember what it felt like to be without support and to be loaded with blame. I remember how the fear felt like a cold vise squeezing my chest to the point where I couldn’t breathe.
Living in Israel, far from evidence based treatment and any type of support, I don’t know how I would have survived without the internet. F.E.A.S.T.’s “Around the Dinner Table” forum was a lifesaver. Both Harriet Brown and Laura Collins held my hand virtually through the worst of times, their books reinforcing what my instincts were screaming—that families can and should be involved in treatment.
Parents today feel scared, like I did then
There are parents today who feel like I did then. They have questions that aren’t being answered. Their children are not receiving specialized care. They have no idea that they are entitled to participate in their child’s treatment; or that their participation isn’t just allowed, it’s both beneficial and highly advisable. They aren’t given treatment options that are evidence based. They aren’t receiving any information about their child’s condition, or any support. They feel hurt, lost, disappointed, disillusioned, and guilty. But most of all, they feel scared. I will never forget what that feels like.
World Eating Disorder Healthcare Rights
I was determined to take my negative experience and use it to help other parents. In addition to offering parent-to-parent support and writing a blog about my experiences with my daughter’s eating disorder, I am co-chair of the Academy for Eating Disorders’ (AED) Patient/Carer Committee. I was very nervous about taking on a leadership role in a professional organization when I was “just a mom,” but it’s been an enormously positive experience for me.
The Patient/Carer Committee’s latest project is a new document called “World Eating Disorder Healthcare Rights.” We call it a “global blueprint for promoting excellence in care through patient-carer-professional partnerships.” We believe that cultivating these partnerships is extremely important, and that patient/caregiver rights should be as clear in mental health as they are in the physical health realm.
I am convinced that World Eating Disorder Healthcare Rights can close the gap between patients/caregivers and providers, improve communication, break down barriers to treatment, and raise the bar of best practice. I know that together we can change the face of eating disorder treatment to be more respectful, more compassionate, more effective, and more supportive of patients and their families.
Silent no more
Even though my family eventually did find providers who believe that caregivers can and should be partners in treatment, part of me remains traumatized from my family’s early experience. That is why I am passionate about making sure that what happened to us does not happen to other families, and that is why I put my heart and soul into helping create and disseminate World Eating Disorder Healthcare Rights.
I do not remain silent anymore when I feel that treatment is wrong. I am not the same mother who let herself be told that “moms wait outside.” Not this mom, not anymore. This mom is wherever her daughter needs her to be.
Sharing your story
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