When your advocacy message disagrees with the narrative of sufferers

When your advocacy message disagrees with the narrative of sufferers
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I have recently been accused of denying the personal narratives of people with mental illness because I assert a different belief about the cause of that illness than they do.

We’ve had this conversation before, as a society. We’ll have it again. So, let’s just get this out there. It’s really, really painful, but we are going to hurt another generation of eating disorder sufferers and waste precious time if we don’t.

I’m sorry. I don’t believe your parents caused your eating disorder.

I know this is your personal narrative, and that by saying “parents don’t cause eating disorders” you feel that I am denying your experience and denying the ways your parents were neglectful, harmful, and even abusive. But, I’m not.

Why does it matter what caused it? And why isn’t it okay for me to have my story and you to have yours?

Causation matters because it guides treatment. Unfounded beliefs about mental illness causation are part of the sad history of psychiatry. Those beliefs led to treatments that were cruel, violent, and ineffective. We had to let go of those well-meaning but unfounded ideas in order to stop those treatments. We no longer give lobotomies or hysterectomies to treat psychiatric problems because we know that we were wrong about the role of the frontal lobes and the uterus in mental illness.

With autism and schizophrenia we have ended parent blaming. We no longer think that refrigerator mothers and disengaged fathers cause those brain disorders. Treatment no longer involves removing sufferers from their homes and treating their symptoms as signs of abuse and neglect.

We have to do this with eating disorders. We need to do it thoroughly, unequivocally, and urgently if we really want to help sufferers recover. We need families front and center and engaged. We can’t do this half-heartedly, or case by case, and we can’t do it while secretly still believing it. We can’t absolve parents of direct and sole causation but then change the wording to “contribute to” to mean the same thing.

If we thoroughly believe that parents don’t cause eating disorders then we can get to the point: getting parents to take responsibility for what we actually have done and must now do. If there’s abuse, it has to be acknowledged and dealt with. If the home is a place of negative messages or a poor environment for recovery, that has to change. It doesn’t matter whether those things caused the eating disorder: they have to change.

Not causing the disorder doesn’t mean parents can’t make it worse. It doesn’t make us good parents or good caregivers. It doesn’t mean we DIDN’T neglect, abuse, or do things that make recovery harder. Not causing doesn’t mean we didn’t do anything wrong. It means we don’t get to make it about us, at all. You don’t get to waste time on guilt or blaming others. You don’t get to step back and let others do the work because you feel guilty or bad about it. Your job is to be a parent and caregiver. To learn what you need to know, to act on your loved one’s behalf, to change ideas or beliefs that are holding you back, and to make your home and family a safe and positive place to recover and stay well. I’m simply not going to blame parents for causing their child’s eating disorder. But I am going to hold them responsible for recovery.

Guilt is a self-involved and unhelpful emotion and a luxury parents can’t afford with a loved one in harm’s way and siblings with their own need for a functioning family. We need to stop promoting it.

Guilt is a self-involved and unhelpful emotion and a luxury parents can’t afford with a loved one in harm’s way and siblings with their own need for a functioning family. We need to stop promoting it.

Parents don’t cause eating disorders any more than we cause allergies or diabetes. We need to stop working backwards from a diagnosis to look for the usual suspects and continue the legacy of focusing treatment for the eating disorder on the wrong things. AND, we can’t be afraid to acknowledge abuse or bad parenting.

We need to look at the individual person suffering from the eating disorder as a whole, including any negative experiences or abuse, without delaying eating disorder treatment and without excluding the family. Those factors don’t need to cause the brain disorder to be necessary information in caring for that person. Eating disorder treatment, alone, will not heal abuse or poor parenting. Making that person’s mental health needs all about the eating disorder by making the eating disorder the result of the abuse is reductive and ineffective.

It is very common for people with eating disorders to blame their parents for some or all of their problem. For some, it is a symptom of the disorder and resolves with recovery. For others, it seems the only possible and logical explanation and fits with their experience with objectively harmful parents. Still others are believing what they’ve read or been told in treatment.

Unfortunately, the narrative of blaming eating disorders on parents is an important part of many people’s stories. Having a “reason” or reasons for their disorder has helped countless people find the will and support and treatment they needed to recover. But centering the person’s life around the eating disorder and not their whole story is a mistake not only because it is incorrect, it also makes the eating disorder the measure of the problems in their life. Eating disorder recovery won’t heal the damage of abuse or poor parenting or parents who promoted poor body image. People deserve help and support for all the issues in their life for their overall well-being and health, not based on the severity of their mental illness symptoms.

But you can’t help someone with their life’s difficulties without first treating the eating disorder. Period. Eating disorder symptoms and thinking make any life a misery but also make it nearly impossible to fix one’s problems or heal from one’s experiences. Just as we don’t expect people to overcome addiction while high, we can’t wait for insight and motivation before treating the eating disorder.

We need to ask ourselves: why do eating disorder sufferers have to be diagnosably suffering for us to believe they deserve our intervention and help? Why do we need eating disorders to be our reason to care about neglect and abuse and toxic messages about our bodies and self-image?

I honestly grieve the way dispelling this parental cause myth seems to some to deny their personal narrative and recovery. Yet I honestly do not know how to protect that myth without actively denying early intervention, effective treatment, and lasting recovery for those currently suffering or soon to suffer.

I have to speak up for the principle of this because we don’t have time to wait for the generation now in treatment whose narratives will not be parent-blaming: their treatment no longer promotes this idea. We can’t wait for the clinicians who were trained in earlier eras to retire, and for the training materials to be updated. People will die waiting, and families will be destroyed.

There was a period, with autism and schizophrenia, when not all providers and not all parents were on board with a non-blaming stance. It took a while for that turnaround. We don’t have time.

There will always be pockets of dissenters, and those whose personal narratives do not align with current insights. And current insights will change and evolve over time. There are still those who believe vaccination causes autism, for example, despite abundant evidence. We cannot wait for them to change. We cannot protect those with those beliefs from the debate, or give them equal time and equivalency in advocacy.

I wish I could. I don’t enjoy causing people to feel unheard, or marginalized. I don’t enjoy the bruising attacks on my motives and character.

But I think of the family that next year will realize their precious child has an eating disorder and I need them to know that early intervention and full engagement by the family is that child’s best chance.

And I want the child, also undiagnosed, whose parents are abusive or just plain wrong in their ideas about eating and weight, to get the care he or she needs as well. Care that recognizes the eating disorder AND the parental harm. Care that doesn’t let that family off the hook by just blaming them based on the symptoms. Care that holds parents responsible for change and action and even creates a new family for that person if necessary.

Those children, the soon to be diagnosed ones, have a better chance at recovery and living healthy lives if the world around them knows “parents don’t cause eating disorders” and that “parents are the most important factors in recovery, good and bad” as well.

I am so very angry that your parents let you down. I do not deny that experience nor do I believe you are unharmed by it. The harm is deeper and more important, really, than just an eating disorder. Your eating disorder is not the measure of your pain. I may not agree your experience with your parents was causal to your disorder but I do believe it was harmful and tragic and not your fault. I care about that harm very deeply for its own sake, and how it complicates recovery from mental illness. I want you to live free of your eating disorder, and to heal from your parent’s failure to nurture and protect you as they were supposed to do. I want you to speak loud and openly about your experience as much as you wish and I believe your story is important. Your narrative matters, and it matters to me. I hope in time you see that for us, the parents who are fighting for other families to get good care, are fighting for you, too. For that we’ll have to keep listening to one another and continue to try to understand.

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