One of the hallmark symptoms of Anorexia Nervosa (AN) is anosognosia, or a brain-based inability to recognize that one is sick. For this reason, most patients have little or no insight when they first present for treatment. Even months into effective treatment, most patients with AN continue to demonstrate anosognosia from time to time, if not consistently. The irony here is that most patients with AN do not believe they are sick until after they have gotten well.
I am outspoken in my belief that insight is unnecessary, not to mention unlikely, in early recovery from Anorexia Nervosa (AN). I do not expect my patients to have any insight whatsoever early on in their treatment with me. I expect kids with AN to present in my office denying that they have a problem. Their lack of insight does not delay or undermine treatment one bit.
In Family-Based Treatment (FBT), the patient is not required to demonstrate any insight at all during Phase I (Re-feeding and weight restoration). Phase II (returning control of eating to the adolescent) and even Phase III (establishing a healthy adolescent identity) can be successfully completed with a relatively small amount of insight on the patient’s part.
The re-feeding and weight-restoration components of treatment can be achieved without the patient’s consent or compliance. Through FBT and similar family-centered approaches, parents can feed their children complete, balanced nutrition and ensure that they maintain a healthy weight for as long as necessary. In theory, a patient could exist in an externally-maintained state of physical health forever, which would be far better than suffering the long-term medical and psychological consequences of AN. But this is not recovery.
Children and younger teens tend to lack the maturity to develop good insight even after their AN has been in remission for quite some time. Lack of insight is completely normal at this stage of development, even for kids who have never had a brain disorder. It is not necessarily problematic for recovering adolescents to lack insight as long as they are living safely under their parents’ roof.
For older adolescents and young adults, however, there comes a point later in recovery, after physical health is restored and most mental symptoms have subsided, when a patient does need to develop some insight about their illness and “own their recovery.” Patients do not need insight to get well, but they certainly do need insight in order to live a healthy, fulfilling, independent life.
As a side note here, the type of insight I am referring to here has nothing to do with “discovering the root cause” or “learning to love yourself” or “finding your voice” or any of the other talking points commonly referenced in ED recovery circles. The important insights to gain, in my opinion, are the following:
1.) Acknowledging and accepting that you have (or had) an eating disorder, which is a biologically-based brain illness that you did not choose to have and your parents did not cause
2.) Acknowledging and accepting the possibility of relapse
3.) Ability to recognize eating disordered thoughts, feelings, and behaviors in yourself
4.) Understanding the necessity of maintaining full nutrition, every day, for life
5.) Accepting the necessity of maintaining your ideal body weight in order to reduce the risk of relapse
How do you help a person who is recovering from AN to develop insight? It’s tricky, and it varies considerably based upon the patient’s own unique experience of having AN. Unlike full nutrition and weight restoration, insight cannot be thrust upon someone against their will. The patient must be an active participant in the process.
I find it helpful, as a therapist, to have frank conversations with patients and their parents about the biological basis of AN, potential triggers, vulnerability to relapse, and the importance of practicing good self-care. A single conversation at the start of treatment is rarely sufficient. Instead, I integrate these conversations into most of our sessions to help the patient absorb and internalize this information. For the first few months of treatment, these discussions are primarily for the benefit of the parents, as most kids are too malnourished and shut-down to process this information. However, after weight restoration and brain healing, these discussions can have a powerful impact on recovering kids.
Parents often have these insight-building conversations with their recovering teens at home. Often, teens will get defensive, shut down, or lash out when parents bring up these topics. But sometimes kids actually listen!
Many weight-restored patients go through a phase of romanticizing their AN, longing to return to the days of extreme thinness, perpetual motion, and hyper-focus on academics and athletics. While these feelings are understandable and typical at a certain stage of recovery, they need to be counterbalanced with conversations about the negative impact AN had on their bodies, their minds, and their lives. Otherwise, it is all too easy for recovering people to view AN through “rose-colored glasses.”
Bear in mind that the development of insight can take years. Recovered teens who initially presented for treatment at age 13-14 (the typical age of onset) will often show a blossoming of insight around age 17-18, just as they are preparing to leave home for college. This newfound insight is often the result of a variety of factors, including consistent full nutrition, brain healing, normal adolescent developmental processes, maturity, frontal lobe development, and successful therapy. I have worked with many adolescents for whom this happens beautifully, organically, and right on time. These kids go off to college in other states and thrive.
In other cases, however, the timing may be far less convenient. Those who develop AN at 16 or 17 years of age may not be sufficiently recovered to develop the insight needed to manage their illness independently at that magical age of 18. Similarly, who relapse during their junior or senior year of high school may have a setback in the process of insight development and thus may not be ready for independence right after high school.
In some cases, kids are diagnosed in childhood or early adolescence but don’t receive effective treatment until late adolescence. In these cases, it may take even longer for insight to develop if the illness has become entrenched and emotional maturity lags far behind chronological age.
Further, teens who have suffered through months or years of ineffective treatment may have built up an arsenal of bogus myth-based insight that has nothing to do with the reality of their illness. For example:
• “I developed AN as a way to cope with feeling out of control in life.”
• “I have to want to get better on my own. I have to do this for myself.”
• “Re-feeding doesn’t help us discover the root cause of your illness.”
• “I am enmeshed with my parents and this is keeping me sick. I need to become more independent.”
These myth-based “insights” very often result in parental alienation and protracted illness.
As you can see, all insight is not equal. The insights worth having are those that are based in empirical science, those that empower parents to help their offspring recover, and those that serve to help patients achieve and maintain their physical and mental health while living a full and meaningful life.
Have I told you lately how spot on YOUR insights are? This is fantastic.
I’m blushing. Thank you 🙂
I would venture to say that I’m having a difficult time with those insights, to say the least.
I may love this more than anything I’ve ever read–so spot on!
Oh my gosh! I am in tears. To read again, to see again, to finally have a psychologist say that as the mother, my daughter’s ED was NOT my fault. I thank you. I want to print this out and carry it around with me for a very long time. The “insights” vs. the “myths” are so valuable. Thank you.
A year into recovery and I have seen brief flashes of insight from my 14 year old. I have been asking our care team about the process of gaining insight but none have had the answers. Your article helps greatly. Thanks also for validating the necessity of counterbalancing the romanticized thoughts of the E.D.. Your article has provided some clarity around the elements of successful recovery. Thank you!
Thanks for this article! So helpful. I always try to apply these ideas to an older group of patients 18+ because that’swho I come into contact with and my daughter is 22. I saw her transition as she gained insight. And I see how young adult patients still deep in the ED do not have the necessary insight – -but are constantly told that until they develop it , they either can not receive treatment or at the best, can get treatment but probably will not succeed. The question I have is about how to apply this to the older patient who will not be refed by family – but in the hospital, rehab or by some other support network. I always wonder why the focus is on family refeeding and why it matters if the patient is 16 or 24 …
Sheryl,
Everything I wrote here is absolutely applicable to young adults as well as adolescents. I focused this article on family-based re-feeding because that is what I do in my practice, but the same principles would apply if a patient is re-fed in hospital, residential treatment, or by another support network.
The illness is the same whether the patient is 16 or 24. The 24-year-old can be successfully re-fed by her family as well. The problem is that society (and most of the eating disorder world) has not yet accepted the reality that adults with AN need the emotional and practical support of their families every bit as much as teenagers. Unfortunately, we have laws and social norms that dictate otherwise.
Another glitch when it comes to re-feeding in treatment centers is that many treatment programs for adults with AN will not admit a patient, or will not continue to treat a patient, unless she wants to be there, wants to eat, wants to get better. Clearly, most people with AN do not have this insight will they are ill. When a program has this philosophy, treatment is delayed, illness is prolonged, lives are lost.
Love it, accurate and well written!!!!
Sadly though, in Australia there are no effective treatment facilities. The reality is that if FBT is tried and tried and the ed sufferer simply refuses to eat point blank, we are left with our sick child until they become medically unstable and then very medically unstable, heading towards deaths door, all before hospitals will consider “wasting” a bed on a sufferer. Then they discharge as soon as possible and recovery is near impossible without refeeding in a hospital. This applies to under 18s as well. When they turn 18, there are only a couple of beds, so as soon as electrolytes are stable “enough”- they’re discharged and the whole cycle starts again. They leave, starve, they die or nearly die and go in to hospital for a couple of days, leave and do it all again.
The best resource we have is MAED! When my daughter was 13, the head paediatrician told me to take her home to die!!!! When I get my life settled down n sorted, I’m going to name and shame many people for their gross incompetence! Perhaps when they fear a litigious society they may actually give a hoot about our kids!
Meanwhile can we clone you Sarah? Jan xx
Hi Jan, have you heard of ‘Project Heal’ at all – they offer scholarships for ED treatment – I am not familiar with what this entails, but – perhaps there will be some hope for you here. https://www.facebook.com/projectHEALsydneyaustraliachapter/info
Also, there is an online resource called Around The Dinner Table which has support forums for parents and kids dealing with ED, it is based around the Maudsley method and there are some excellent ideas that may help you. Namaste.
I would like a Sarah clone here in Wisconsin as well!! Very glad for this article because some people seem to think my 13 yr old should have those insights already.
Dear Sarah,
As you know I am a big fan of yours. Your clarity in writing the truth about EDs is so appreciated.
I still hear, all the time from therapists, the above “myths” you state. That just means there is SO much more work to do.
May I copy/paste this blog post, with your name and credentials and give it to some of those I work with as well as my parent support group? It will reinforce what I say to all the parents.
Therese S. Waterhous
Thank you, Therese. Yes, of course you are welcome to share any information from my blog. Feel free to copy, paste, forward, link, print out, whatever. My greatest hope in starting this blog was to spread the word to a larger audience and help as many clinicians, parents, and patients as possible. I am beyond flattered and humbled that my writing can make a difference in the lives of these precious young patients.
I love your clarity, and it’s really useful to read those timeframes. Thanks!
Sarah:
As a father who gave his best to seek out the evidence-based understandings of AN, and to attempt to protect and rescue his daughter from the ravages of this disorder through 5 years of hell, I am moved by the insight and wisdom of your words.
Thankfully, at 22 years of age, our daughter was able to internalize similar insights, take significant steps towards full recovery, and take charge of living her life well.
She looks back on the ordeal of her eating restrictions and exercise compulsions, terming her anosognosia as just being ‘out of her mind- crazy!”
What nearly drove me out of my mind though were the ‘myth-based insights’ of treatment professionals, allied health providers, and athletic personnel who are duty-bound to do better, or at least, to do no harm.
Despite their good intentions and efforts, many of the fair-minded folks we turned to for help and support were marginally effective at best, and at worst, actually exacerbated the distress we as a family needed to suffer.
As I run through the woulda, coulda, shoulda scenarios of our struggles through the illness in hindsight, I am most dismayed by the sad reality that the necessity of weight restoration before insight was obscured by the opinions of professionals caught up in the cultural conventions of their specialties.
As a lay parent consumed by the struggles and demands of an ill daughter, I feel it should not be incumbent on me to refer professionals tasked with watching out for her well-being to current recommendations for treatment and standards of care. Anosognosia is to be expected from the patient, not the provider!
Although it is conjecture on my part, I am of the opinion that if everyone in our daughter’s circle of support had been unrelenting in leveraging her towards a healthy weight as the prime directive, her illness would have been less protracted and spared us all some misery.
Fortunately, I painstakingly found my way to leaders in their fields who are citing the science, spinning the threads of new gold standards of treatment, and dispelling the myths. I listened to them, and found the will to persist and help my daughter prevail. To them, I am forever grateful!
Thank you, Sarah, for bringing more sensibility based on sound science and sanity to a field where insanity still prevails.
I can identify with the disassociation with the need to eat and how ‘well/unwell’ I may be. The trouble is despite a life savinginpatient stay and support from a day support centre previously, if you live in your own as a 50 year old sufferer, unexpectedly diagnosed 3 years ago, without family support, it is,to date , despite my very best efforts, totally exhausting and totally impossible to manage the illness on your own! I’m advised to ‘just develop skills to cope with eating’….
Tremendous piece. Thank you so much for sharing.
Having experienced a spectrum of disordered eating, recovery, and relapse after I realized I was only living “recovered enough”, the thought of insight when put in your words almost brought me to tears. This is the type of stuff that means true and real healing.