By Judy Krasna, F.E.A.S.T. Executive Director
Last week, one of our social media posts was a “mythbuster” graphic about the need to find underlying “causes” of eating disorders. The myth was that you can’t recover from an eating disorder until you find the underlying cause. The mythbuster was that for some people there is an underlying cause or trauma and for others there isn’t; and from what we have seen, what leads to healing the brain and to recovery is the normalization of eating and sufficient weight gain.
That was a lot of content squeezed into a social media graphic; in retrospect it was way too big of a topic to have been presented in that format. Totally my bad. And more importantly, I realize that the word “cause” is problematic and I shouldn’t have used it. We don’t know what causes eating disorders.
One of the biggest myths that I encountered personally on my journey, one that inflicted catastrophic damage, was this myth of needing to find a reason why someone developed an eating disorder. I know that other parents have dealt with this as well, and I wanted to address it in one of our mythbuster posts. I realize though that my execution was flawed, and I apologize for that.
I would like to share some of my experiences as a cautionary tale.
My daughter had a treatment team at the beginning of her illness who believed that there is an underlying cause of all eating disorders, most often trauma. They believed that until this underlying cause was uncovered and addressed, recovery was not possible. And so, they dug and dug trying to find what caused my daughter’s eating disorder. They didn’t believe that it was genetic or biological or brain-based, or that she had a predisposition to developing this eating disorder, or that restriction and the resulting weight loss led to negative energy balance. They believed that it was the result of something that happened to my daughter; and until they discovered what that thing was, my daughter couldn’t recover.
My daughter kept insisting that there was no underlying cause or trauma. Her treatment team tried to convince her otherwise, session after session, to the point where my daughter asked her sister, “I wasn’t abused, was I? I don’t remember any abuse, but they keep telling me something must have happened.” The irony is that the trauma came from my daughter’s treatment team after she had developed an eating disorder.
My husband and I were extremely distraught about the possibility that our daughter experienced some type of trauma and we didn’t know and didn’t act to help her. Her treatment team put this awful idea about trauma in our head, during a time when we were already in a state of extreme crisis.
And because the focus was on discovering the “root cause”, under the mistaken assumption that there always must be an underlying issue, my daughter’s treatment team was not actually treating her eating disorder. They were losing time and losing ground during a critical point in her illness when treatment should have been aggressive. Because they assumed that there was some type of trauma or abuse somewhere, they were suspicious of us as a family. It affected not only the way that my daughter was treated, but the way that we were treated as well, and it was used as a wedge between us and our daughter.
Due to this experience, I feel strongly that treating all eating disorders with the assumption that there must be an underlying issue is damaging. I thought this was important to highlight as a myth, because I am definitely not the only parent out there who has faced this type of detrimental treatment.
I know that there are people affected by eating disorders who suffered trauma, or who have other underlying issues, and that these factors can contribute to the development of an eating disorder. It’s problematic to call them causes, and I know better, so that never should have happened. I have heard them referred to as triggers, and that resonates with me, but I know that not everyone would phrase it that way.
Any trauma or underlying issues need to be addressed in treatment. If indeed they contribute to the development and the sustenance of an eating disorder, and they are not treated, then recovery may not be possible or sustainable.
This leads me to the second part of the mythbuster, which I think is a natural follow-up to the first part. If the myth is that you can’t recover from an eating disorder until you find the underlying cause, then the truth is that what leads to the healing of the brain and to recovery is normalized eating and sufficient weight gain. Once the brain is renourished, any trauma or underlying issues must be treated so that a person can achieve a full and lasting recovery. But trying to treat those things before weight restoration is accomplished and while a person’s brain is heavily under the influence of the eating disorder is too often futile and frustrating, and leads nowhere productive.
I wish that my daughter had received different treatment that focused on restored nutrition as a priority and that did not assume that there must be a reason why she developed an eating disorder. While her treatment team was chasing after that reason, because they were convinced that there must be one, my daughter’s eating disorder was given more and more latitude to run wild and grow. Instead of leading my daughter toward recovery, her providers led her away from it. I don’t want that to ever happen to another family.
Myths are a barrier to treatment and to healing. Let’s use our voices to break them whenever and however we can.
If you have encountered myths about eating disorders that you would like us to address in our next “mythbuster” series, please let me know at email@example.com.
Everyone I meet asks what caused my daughters eating disorder! I have explained that you don’t look for the cause on so many occasions!
I appreciate this so much! We too were exposed to a treatment team that was looking for a “reason for the eating disorder” and they seemed to do everything they could to divide and separate our daughter from us. Thankfully we were able to get into the care of excellent professionals utilizing FBT and that saved not only our daughter’s health/life but also our family!
I definitely needed to read this post. I can relate. It answered a lot for me. Thank you!!
I think if this is still the status quo that we have such a long way to go. I understand the question from a naive friend or neighbor looking to understand something so alien to their understanding of the world. That never stopped me or my wife from being disturbed by the question as it is at it’s core an accusation towards a parent dealing with a very sick child at exactly the wrong time to accuse the #1 support mechanism the child has to survive. For a treatment team that is experienced it is simply ignorant to focus on a cause as the root of an eating disorder or the path to a solution. We need better, less ignorant, medicine.
Almost sounds like they had an agenda akin to the gender/ sexual orientation nonsense going on in woke public schools .
Glad you got her away from them .
Why is there never any conversation from the social work world of 12 step ( spiritual ) programs ?
Thanks for this information. So timely for my family.
Although I hear you 100%, I wish original treatment folks would have put all the hours of talk and data into truly listening, my child after 2 years found an integrative dr who finally heard the story – classic PANS/PANDAS brought on her restriction.
Professionals said not typical AN – the brain inflammation caused the rage & OCD not the ED. We’re still not to intuitive eating but we experience a whole new level of life.
Restorative weight crucial but that alone didn’t save my child.
Every ED program should recognise possibility of PANDAS. The family PTSD is horrible and preventable.
Dear Elizabeth, can you tell me more about this? My daughters ED (atypical AN) started directly after a throat infection. I’ve mentioned this to doctors as PANDAS seemed possible to me but no one is taking it at all seriously. Diana
Thank you for relaying your experience. My daughter is recovering well, not quite weight restored. Completely agree that there was no underlying ‘trauma’ and thankfully her therapist has never assumed that. From our experience, the ‘cause’ was actually many small events that dovetailed to create the perfect conditions for an ED. These were a sensitive nature since birth, friendship issues, A level stress, concerns about future uni choices, and finally Covid. If one of those stressors had been absent, maybe she wouldn’t have been vulnerable to the ED voice.
Agree that weight restoration made the most significant difference to her state. But also the constant unwavering support of the family which she tells us now gave her the strength to fight.
She had to stop going to school to restore her weight so is being homeschooled. Not ideal but it’s wonderful seeing the bright happy young lady emerge after all the months of challenges.
It’s such a common misconception. I bashed my own head against this wall for a long time trying to work out what terrible event had ‘caused’ the eating disorder. Thank you Judy for your brilliant work highlighting myths like this one and keeping the quest going to educate everyone about eating disorders.
I re-looked at the post & feel you are being too hard on yourself. I don’t see what the issue is/was – the concept is a big one for sure but almost any topic related to eating disorders is.
Thank you for adding in your story to elaborate even further on your family’s experience.
My daughter was ten. She had an idyllic childhood. There was zero trauma. She decided to stop eating “ junk food” and exercise more bc school told her that. And that was it…down the rabbit hole she went. EDs are rampant in my first cousins. My husband has them on his side too. It’s pretty obvious to me how genetic EDs are. And your piece is 100% spot on. Even if there was trauma/abuse, until the brain has what it needs for any rationale thought, therapy is useless.
My daughter is almost 22. She says “ I just got sick. That’s it. I just got sick.”
So much wisdom. Thank you!
Thanks for this Judy. Ironically, it was this belief that delayed my daughter’s diagnosis. Our kind pediatrician knew us well and, because there was no trauma, he assumed she did not have an eating disorder. He spend two months running tests and send us to a specialist who spend two more months running tests–all while our girl began to disappear before our eyes. If he –and we — had known what to do sooner, so many things might have been different.
My (now adult) daughter is in recovery after ten years of an horrific eating disorder. It took eight years before my daughter was diagnosed with autism. This diagnosis helped start her recovery. A therapist helped us reach this point and the eating/weight gain came after. There is a point to therapy when at a very low weight. It kept my daughter alive and it helped her start recovery. I don’t know whether autism was a ’cause’ of the ED – but the lack of any understanding by us and her various treatment teams (in five different hospitals) almost certainly was. Autism is harder to detect in some people (and, generally, females) and the ED was my daughter’s response to her intense feelings of discomfort around growing up.
Speaking as someone who actually had an eating disorder – anorexia then bulimia as an adolescent and young adult – I really disagree with this whole post and the comments. From my experience and from everyone I know who has actually suffered with an eating disorder – there is always a cause. Eating disorders do not form in a vacuum and until you get to the real root of it the symptoms may leave you for awhile, but they will come back. For many suffering there are indeed major traumas (and the research backs that up). For others there are small ‘t’ traumas (and the research backs that up). There is always an *emotional* root because eating disorders are emotional coping strategies. I know parents struggle to understand, and it’s hard to accept the truth, but your ability as parents to empathize and self reflect really matters here. Recovery is possible but it’s about much, much more than weight restoration.
Agreed. As someone with an eating disorder, there definitely were many underlying cause(s). I don’t believe that it’s solely due to one cause. Considering that I do have a family history of mental illness, maybe part of it is a genetic predisposition. On the other hand, I experienced trauma as a child, had an social anxiety, depression, and OCD, and had very poor body image and self esteem, and a highly perfectionistic personality. So I believe these emotional factors contributed to my ED and without addressing these factors in treatment, true sustained recovery isn’t possible. And also I feel like sometimes parents are partially to “blame”. Not true in every case but sometimes parents will project disordered eating onto their children and there might be serious relationship issues within the family. Saying parents are not to blame removes the responsibility that they need to take. Yes, weight restoration is important, but won’t solve all the problems. What i disagree with on FBT is that some parents seem to withhold individual therapy on the basis that we are essentially malnourished vegetables. Maybe a malnourished person cannot think 100% rationally, but for many patients FBT is very distressing and it is harmful not to allow the patient privacy to talk to a therapist about their distress in individual sessions.
I hear what you are both saying. I wrote this from my perspective and my experience and you are certainly entitled to yours. I agree that there are contributing factors to an eating disorder, but that is not the same as underlying cause. It distressed my daughter tremendously to be told that she suffered trauma when she didn’t. It made her question herself and others and it did nothing but damage. That is my truth. FBT is not about withholding therapy. I know personally that weight restoration will not solve all the problems for some, especially for people with co-morbidity. But for others, it actually does, which is why FBT works and they are able to recover. I don’t know a single parent who thinks of their child as a malnourished vegetable, and I think that’s really not a fair thing to say. We see our real child in there, we love that child more than anything, and it’s because we see them and love them that we fight for them as best we can.
Judy, as someone with AN I completely agree and I thank you wholeheartedly for sharing your truth; it is others’ truth too. I was very resistant to the idea at first – it makes me shudder now how far I’d internalised the idea that I was an ’emotionally troubled’ person. It was an identity I never wanted, but had somehow grown attached to. But gradually, thanks especially to Tabitha Farrar and later FEAST, I saw the light. I now get incredibly angry at the mainstream view of anorexia as being a maladaptive coping/control mechanism. People are dying while waiting to find their cause.
I’d urge those with lived experience to explore or at least not reject the idea; emotional issues may have caused the restriction, but that’s not the same as saying they caused the AN.
This is truly a loaded topic and such a significant one. I definitely feel like hearing from all people about their journeys’ helps us all to understand this insidious disease and path to recovery better. I also believe that, in fact, some patients may have a really strong factor/trauma that helped contribute to their developing an eating disorder, while others may have several small factors/triggers/biological or otherwise, that contributed. It is essentially impossible to always know if there was a huge trigger/trauma, and even if so, what it is, and how many other factors are involved. For some, addressing the main trigger will be more significant than for others. Working to achieve effective emotional coping strategies is what all of us need to navigate life successfully, but that does not take away from the fact that weight restoration will ALWAYS be an initial main component of the recovery plan. I will weigh in here about my family’s journey as I myself had an eating disorder as a teenager, so did my sister, (neither of our eating disorders were “diagnosed” officially, just under the radar, but definitely there) and my daughter is currently in the middle of her recovery. So, definitely talks to the predisposition that can run in families and I am in a position to see this from “both sides of the coin”. Neither my sister nor I had any significant trauma in our life. Was our life perfect? No. Did we have some worries? Yes. Were there perfect relationships between all members of the family? No. Did we have a loving family and good support, nightly family suppers and knew without a doubt we were very loved? Yes. I was perfectionistic in nature and like to “be in control” by nature too. I had a great circle of friends and was well regarded by teachers and classmates. Although my parents were extremely positive parents and I got great grades and was great in sports, I still suffered from low self-esteem. I really do think that it is better to regard of all these as “factors” and not “causes”, because there are many other people with these factors that do not get this illness. So, yes, there are always going to be emotional roots to each person that gets this illness, but as every person in this world has some distressing emotional thoughts/roots in one way or another, and yet not everyone is getting an eating disorder, that cannot be the full answer as to the cause of the illness. I pulled out of my eating disorder on my own (lasted about 2-3 years) when the next stages in life beckoned me with greater appeal than my eating disorder. Looking around at my classmates, there were girls whose families had far worse relationship issues, and many disordered comments from their parents about food and body image, (my parents or siblings never made disordered comments) but lo and behold, THEY did not develop an eating disorder, I did. I was not surprised or shocked therefore when my daughter, seemingly overnight developed one. I was on to her immediately, but even so, it took many months to even get to point A on her recovery. I too, went through a period thinking I have to make sure I am balanced, centered and heal other relationships in my family which will all help her, which may be true, but I do feel that not using an FBT approach right at the beginning, for the first few months, and instead focusing on family dynamics, delayed her healing. I understand the feeling of wanting to see a therapist for distressing feelings on your own. In fact, although I know that it is not really FBT to do this, and that a malnourished patient cannot get full benefit from therapy, I instinctively felt that it could be important to my daughter (as I felt like it could have been good for me as an adolescent) and she began CBT therapy right when we started FBT. I was worried at the time that not using the pure, manualized FBT approach might “cancel” what we were doing using the FBT approach, but a valuable piece of advice that I kept reading about on the FEAST website was that in the FBT approach every family has to custom tailor it to their specific family and child. Just as an aside, my daughter (as far as I know) did not have any major trauma in her life. She is exceptionally smart and talented. She was “living high”-everyone wanted to be her friend. Enter COVID and puberty at exactly the same time, mix in the family predisposition together with her emotional self, etc… and she developed an eating disorder following one week of dieting (copying an older sister).