By Judy Krasna, Executive Director
Last week, an organization that I follow on Facebook re-posted the 9 Truths. In the comments, there was pushback on Truth #2: Families are not to blame and can be the patients’ and providers’ best allies in treatment.
The commenters were angry that there was a blanket statement about not blaming parents when they felt that their own parents played a significant role in the development of their eating disorders. This hit a very personal and sensitive nerve for them, and their reaction to a statement saying that parents don’t cause eating disorders was furious.
I read their comments with dismay. First and foremost, I feel sorry for their experience. I can’t imagine what it must have been like to grow up in an abusive environment or to live with such a horrific illness like an eating disorder without a family to support them.
I can’t argue against someone else’s truth. In fact, I wouldn’t want to. I respect their truth, and I understand their desire and motivation to fight against a statement that doesn’t represent their truth.
The thing is, I also have a truth. My truth is that I think that parent blaming contributed in some way to my daughter’s death. Therefore, when I see people pushing back against a statement expressing that parents don’t cause eating disorders, I can’t just let it go.
I am not the type of person who leaves negative comments on other people’s posts. On principle, I try not to engage in drama of any kind. However, as a leader at F.E.A.S.T, and as a mother who has paid the ultimate price for parent blaming, I can’t let these comments stand without reacting to them publicly. And so, I left a comment of my own, knowing that I was leaving myself open to a floodgate of vitriol and negativity.
We know that when it comes to eating disorders (and every other illness), early intervention and effective treatment are key factors in positive outcomes. This means that the period directly following diagnosis is critical in getting the right treatment if a person is going to have the best chance at recovery. Unfortunately, for us, my daughter received the worst possible treatment during that period, which gave her eating disorder the ability to entrench itself so deeply inside of my daughter that it proved impossible to uproot.
From day one of treatment, there was an attempt to separate us from our daughter. It wasn’t something that I could put my finger on at first, it was just a very uncomfortable feeling that her treatment team was trying to keep her away from us. This genuinely puzzled me, because we were close, and I knew that she needed our love and support while she battled against her eating disorder.
Instead of using our family as an asset, her treatment team treated us like a liability.
My daughter told me some of the things that they said about us during her sessions, trying to get her to open up about family faults that didn’t exist; she too could not understand why they were trying to drive a wedge between us. The implication, which was overt, was that there must be something wrong with our family if our daughter developed an eating disorder; and if they could not find this cause within our family, then they could not treat our daughter.
In effect, her treatment team was so obsessed with finding the root cause of my daughter’s eating disorder, which they were convinced lied within our family, that they did not actually treat her. She became sicker and sicker, and they were too busy blaming us to notice. We lost valuable time, and precious ground, to my daughter’s eating disorder. And even though later on we found much better treatment, the damage was done. It proved irreversible.
During a school holiday, we were told to bring all our kids to a “family therapy” session. We sat in the office of the director of the residential unit with our chairs in a circle facing each other and we were all asked to answer a question: “What do you think you did that could have caused Gavriella’s eating disorder?”
That experience significantly damaged my other children and kept them from getting therapy for themselves for many years. They were too traumatized by being blamed for their sister’s illness and by the association between that blame and therapy.
My husband and I were told that our daughter developed an eating disorder because we were too fat. Other parents were told that their child developed an eating disorder because they were too thin. It seems that the blame was totally indiscriminate; the therapist just wanted to get the blame in however she could. For the life of me, I can’t imagine what purpose that blame serves.
We needed to be empowered as parents, and the blame weakened us. Instead of giving us the information and the skills that we needed to help our daughter, her treatment team pulled her away from us; though they had not one shred of reasonable suspicion, they were trained that we must be guilty of causing her eating disorder, because parents cause eating disorders.
I can’t help but think about how things could have been different if we had been viewed as assets and allies in our daughter’s treatment instead of being viewed as an enemy. Would the outcome have changed if she had received treatment that was steeped in evidence and not in parent blame? At the very least, I believe that the trajectory of her eating disorder would have taken a different path.
I am adamant about the need to defend Truth #2 at all costs. Families are not to blame and can be the patients’ and providers’ best allies in treatment. Had my daughter’s original treatment team believed in this truth, she may have been given a real chance to recover, and the tragedy of her death may have been prevented. That is my truth.