A 31-year-old woman named Monica recently died from anorexia nervosa (AN) following a 15-year battle with the disease. Her death is an eerie reminder of what we already know: eating disorders are dangerous, deadly, and difficult to treat. Traditional treatment for AN typically takes 5-7 years. Less than half of patients with AN will ever fully recover, and of those who do recover, one-third will relapse. Nearly 20% of patients with AN will die as a result of their illness.
Just a decade ago, only 30% of patients fully recovered, and now nearly 50% will fully recover. The reasons for the improved prognosis include greater awareness about eating disorders, which leads to earlier diagnosis and treatment, and the advent of more effective, evidence-based treatment for adolescent AN, such as Maudsley Family-Based Treatment. But early diagnosis, early intervention, and the Maudsley method primarily benefit adolescents. Consequently, I would presume that the 20% increase in recovery rates over the past decade is primarily due to the recovery of more adolescents, not the recovery of more chronically-ill adults.
Although AN typically begins in early adolescence, those who die from the disease are more often adults who have battled it for many years. The most effective course of action is early diagnosis and aggressive, evidence-based treatment as soon as symptoms appear. Unfortunately, there are countless adults with AN who have struggled for years or even decades. As of this time, there are no evidence-based treatments for adults with AN, nor are there any medications which have been proven to benefit adults with AN. CBT has been shown to be moderately beneficial in preventing relapse in weight-restored AN patients but shows no benefit in underweight anorexics.
A lot of the AN treatment offered today is outdated and ineffective. Fortunately, however, there are more and more clinicians and treatment centers who are adopting modern, evidence-based approaches to treating adolescent AN that have much higher success rates. For example, the Kartini Clinic, the UCSD 5-Day Intensive Family Program, and the Children’s Hospital at the University of Chicago have adopted a highly-practical family-based, evidence-based approach to treating adolescent AN based on the Maudsley Method.
We can learn a lot from the success of these adolescent programs. I believe that we can use the basic principles of Maudsley FBT and the philosophy of these adolescent treatment programs to develop effective treatments for adults. Medicine, psychology, and psychiatry do this all the time in the reverse; that is, they extend effective adult treatments to adolescents. If a particular medication or psychotherapy approach demonstrates effectiveness in adults, clinicians automatically begin using it in adolescents, often without any research data to support its use in this population. Clinical trials are then conducted on adolescents, and research data follows.
Consider the basic principles of Maudsley FBT:
1. Conceptualization of AN as a biologically-based brain disorder of unknown origin
2. Externalizing the illness
3. Viewing family members as vital resources in a patient’s recovery
4. Recognition that most of the symptoms of AN are direct result of malnutrition and thus will abate after weight restoration
5. Focus on nutritional rehabilitation and weight restoration as non-negotiable first priorities in treatment
6. Acknowledgment that patients with AN are unable, in the acute phase of illness, to make healthy decisions regarding food and weight
7. Coaching parents to provide emotional and nutritional support to their child
8. Addressing psychological symptoms and other comorbid disorders after weight restoration
Which of these principles are irrelevant in the treatment of adults?
I see no logical reason why we cannot use Maudsley FBT in the treatment of adults with AN. Based on the patient’s circumstance and living situation, spouses, roommates, friends, or significant others may be enlisted for meal support in lieu of parents. The specific details may need to be tweaked in order to be relevant to an adult patient’s situation, but the general principles would remain the same. After all, the physical and psychological symptoms of AN are the same regardless of whether the patient is an adolescent or an adult. AN stunts growth and development and prevent sufferers from becoming independent, fully-functional beings. Thus, adults with AN are regressed physically, sexually, and socially to the point that they often resemble adolescents anyway.
The differences that do exist between adolescent and adult forms of AN are not inherent to the disease itself or even to the age of the patient. Rather, they are imposed by society. We, as a society, have arbitrarily determined that teenagers are fully responsible for their own healthcare decisions once they reach their 18th birthday. This is the case regardless of whether the patient has an ego-syntonic, anosognosic condition such as AN which impairs their judgment and insight. By virtue of their illness, adults with AN are unable to make healthy decisions for themselves. And yet, the law prohibits parental involvement, even parental notification of treatment, unless the patient signs a release. The law clearly sides with AN, not with the patient.
Family support and family involvement are powerful predictors of good outcome. Unfortunately, most therapists consider parental involvement in an adult patient’s treatment unnecessary or even detrimental. These therapists believe that the etiology of AN is rooted in controlling parents, separation anxiety, and issues related to independence and autonomy. Thus, they keep patients separated from the very people who love them most and who may be best equipped to help them achieve full recovery. This is counterproductive because a patient’s physical and psychological wellbeing must always take precedence over the developmental issues of emerging adults which, incidentally, have never been proven to be causally related to AN. Adult patients’ lives are threatened as a result of ignorant adherence to an unproven theory.
I firmly believe that Maudsley Family-Based Treatment can be effective in young adults. In fact, I have used this approach with young adults in my practice with great success. I have seen patients who have been sick for a decade, hospitalized multiple times, and endured several courses of ineffective residential treatment finally achieve recovery as outpatients through FBT. I look forward to the day when FBT is widely available to adults, as well as adolescents, with AN.
19 Replies to “Everything I Need to Know I Learned From Adolescents”
You are very wise and have beautifully articulated why FBT is effective with adults as it is with adolescents. I have seen so many lives wasted with a chronic illness because so many clinicians use old school treatment approaches, looking for root causes, excluding family from the treatment team, and often blaming family for their child’s illness. That served to keep the person’s eating disordered thoughts/behaviors alive, because spending energy looking for root causes, blaming parents or, even more destructive, blaming the person for not wanting to get better and separate, only kept them ill.
In reality, a young adult/adult can not become independent until they are independent from their eating disorder.
What FBT does for both the adolescent and adult is help them to get nourished to restore their malnourished brain, and then to be able to use their cognitive ability once their brain is functioning.
I am very saddened that too many clinicians waste their client’s time and life trying to do CBT or other forms of therapy with a person who is not cognitively able.
It is no wonder that those who have not recovered from anorexia or other eating disorders feel so hopeless and turn to suicide.
I applaud you, Dr. Ravin, for speaking up for all those young adults/families who have been harmed by the treatment approach that only served to perpetuate their illness.
Let’s hope that more clinicians will follow your lead and that there will be more research to show that FBT works with young adults/adults as it does with adolescents.
Those statistics make it seem pointless to even try and recover. I’ve seen those numbers before (5-7 yrs of treatment), and it’s just upsetting everytime. I feel like I shouldn’t even waste my time trying to recover when half the people with EDs don’t.
My eating issues began when I was 14. I never thought a little diet would turn into 18 years (and counting) of ED struggles. Blah! I guess I have to figure out if I really want to change.
Wonderfully said! I now mentor some women with AN, but as someone in remission for about 13 years, I still have some of the “thoughts.” I am better equipped to deal healthily with them.
My husband, however, does not understand this. As we discuss making our family larger, he’s said something to the extent of, “I’ll just order you to eat, and you have to.” 🙁 I have flat out told him, I will not listen to you about this seriously until you have a better understanding of this as an illness, and not a choice.
[for the record, I am healthy and eat healthily. I don’t believe in “good” or “bad” foods, which he thinks is my AN. Um, again: READ!]
You’re right, the recovery stats are disheartening. But please don’t give up. Full recovery IS possible. Recovery takes so long, and so few pepole recover, because they haven’t gotten the appropriate treatment. NOT because they don’t want to recover or because they can’t recover. Your inability to recover is not your faut; it is our fault.
I don’t think you need to figure out if you really want to change. Your ambivalence about recovery is a symptom of ED. Motivation to change is not a prerequisite for recovery. Insight and desire for wellness are the natural results of good treatment and improvement in brain functioning. It is your ED that doesn’t want you to change.
I genuinely believe that if clinicians stopped waiting for adult patients to “choose” recovery, treatment would not take 5-7 years. Further, if clinicians did whatever they could to insist on full nutrition, cessation of binge/purge/excessive exercise behaviors, and weight restoration to the patient’s ideal body weight (NOT to some arbitrary minimal weight) as non-negotiable first steps in recovery, a lot more adults would actually recover.
In my experience, the biggest hurdle to helping adults recover is enlisting people to provide consistent meal support and insist upon full nutrition until weight restoration is achieved. With teens, this is relatively easy because parents have complete financial, emotional, and practical control. With adults, parents, spouses, significant others, and clinicians will intervene only when a patient is “in danger,” but they are very reluctant to assume a zero-tolerance policy towards malnutrition. The end result of their reluctance is a patient who lingers in a partially-recovered state, who is no longer emaciated or medically unstable and can usually pass for “normal” but is tortured constantly by ED thoughts.
In sum, please don’t give up! Seek out high-quality, evidence-based treatment. Surround yourself with supportive people who will help you fight against ED.
Congratulations on your remission from AN! Achieving remission is quite a heroic act.
I have empathy for your husband’s perspective as well as yours. It would be wonderful if your husband educated himself about AN so that he could be more empathic and supportive. By the same token, it is great that he has the courage to stand up to AN (if it ever returns, which hopefully it won’t) and insist upon full nutrition if you are ever unable to fully nourish yourself. At the risk of making a gender sterotype, men tend to be much more logical and practical (e.g. “You’re underweight, so eat more”), whereas women tend to be more concerned with emotions (e.g. “How do you feel? What feelings are getting in the way of eating?”) . Both perspectives are valid. It can be unrealistic to expect one person to meet all of your needs, even if that one person is your spouse. Even if your husband never understands AN, he can still provide you with unrelenting meal support. You can always get your emotional support elsewhere – from friends, relatives, or a therapist.
Hi Dr. Raven.
Thanks for the in depth response. I do think it’s my fault because I feel like I’m not putting in the effort that I should be, but I think that’s because I am not sure I want to. I know you mentioned that it’s the ED that says I don’t want to get better, and you’re probably correct, but the thought of gaining weight is just something that I can’t even think about. I know that’s the case with all ED people, so I’m not unique in that aspect. I do have a great therapist, whom I love working with and she knows her stuff, so that’s good.
My parents didn’t know about my ED when I was growing up. They first confronted me on it a few years ago, so obviously there’s not much they can do to help me. I actually don’t talk to them, or anyone, about it and kind of just pretend that everything is fine. I guess it’s because I’m not emaciated and passing out and in need of hospitalization. I guess I feel like in order for me to really have an ED I need to be physically “bad.” I’m at 85% of my ideal weight, but that’s not that bad.
I kind of went of on a tangent there, but I guess I do feel like me staying in this is my fault. I wish I wasn’t so obsessive and freaked out by food, but at the same time, the thought of giving up all this control is quite scary. My T suggested I don’t weigh myself for a week and I was like, “Um, maybe we should shoot for a day first?!” It’s just getting old and I frustrate myself, but I can’t imagine gaining even just a pound.
Thanks again for your response.
I just re-read this, because it’s good and I think I should keep reading it, so I have a few things to add. My T. threatened to “fire” me (my word, not hers) if I didn’t gain weight. Well, she was hardcore on that and then she left for maternity leave and that’s fallen off the wayside. (Thank God for me). She says she doesn’t want to focus on a number because I am so obsessed with them and wants to move away from that. She’s tried a few times to get me to be a certain weight in order to continue therapy. We’ve also had several meals together. Some she has picked and others I have made and brought in for us. Of course the ones I made were “safe” foods, but she made me eat more than I would have.
I don’t know, I tend to think that I’ll be like this forever. I don’t know if I can give it up.
People with eating disorders can be very sick, both mentally and physically, at a wide range of weights. It is a myth that all ED patients are emaciated. In fact, most of them “look normal” but are suffering tremendously inside. If you are at 85% of your ideal body weight, that is very serious. For someone with an ED, anything below 100% of ideal body weight is serious. If you can find someone to help you restore to 100% of ideal body weight and STAY THERE long enough for brain recovery to occur, then you have a good chance at recovery. At 100% of ideal body weight, you will be in a much better position to benefit from psychotherapy. The majority of patients with AN are unable to reach a healthy body weight on their own, not because they don’t want to, but because they CAN’T. In order to restore your weight, you may need to consider residential treatment or a day program, moving back in with your family temporarily, or enlisting the support of friends or roomates. Ask your therapist about this – she may be able to help you find some consistent meal support. I would also recommend searching the FEAST and Maudsley Parents websites for therapists who have been trained in FBT. Many will use a modified FBT approach for young adults.
Hi Dr. Ravin,
Hopefully I’m not sounding difficult. I do appreciate all of what you’re telling me and am soaking it in. I definitely do not need to gain 15 lbs. I’m only 5′ 1/2″ tall. I don’t even need to gain 5 lbs. I really don’t think I’m underweight at all. Maybe “the charts” say otherwise, but no one seems to be too concerned.
As for Maudsley, I’m not a big fan of that. It kind of annoys me, actually.
As for gaining weight on my own (with the help of friends or family, etc) , that won’t happen because I won’t ask for help because I don’t want to gain weight. No one knows I have an ED anyway, so I’m not going to spring that on them. Definitely wouldn’t move home with my rents and have them force me to eat. As for residential treatment, I don’t need that. I’m too healthy for that.
I think I am sounding difficult. I’m sorry.
No need to apologze. I don’t think you’re being difficult. I do think this illness is incredibly difficult, especially for adults with limited support.
Other people may not be too concerned either because they don’t know how much you are suffering or because they are ignorant about EDs.
I think you are concerned about yourself on some level, and I think part of you wants to recover, or you wouldn’t be reading and commenting on my blog.
I sincerely hope that you are able to recover, by whatever means works for you given your particular circumstances.
Hi Dr. Raven,
I know I would have the support if I asked for it. I would like to be “normal,” but I think the thought of trying to change is too scary, and the thought of gaining weight is definitely way too scary.
In the end, it all comes down to whether or not I want to change or “get better.” No one else can do for me. I know that, though sometimes I wish someone could do it for me or wave a magic wand and make it all go away.
Could you share this column with your family?
If you were my son or daughter (no matter what your age), I’d want to know how you were feeling. I’d want to have the information Dr. Ravin has shared here online. Most families don’t get this information. They don’t know this is possible.
If I were your family, I’d do all I could to learn more about this method and help you kick ED. There is no reason to think your family wouldn’t feel very much the same way. Its wonderful to have loved ones to help you through this and back to lasting health.
I try to avoid any conversations about food, weight, etc. with my parents when I see them. They’ve never actually said the words “eating disorder” to me, which is good. I never said it to them either.
You are correct in saying that my family would want to know how I feel, but I don’t want them to know. I don’t want them to worry about me. I’m fine for the most part. I know they care and love me and would want to do anything to help me. I have the best parents and I love them dearly, and I know they love and care for me more than anything, even more than they do for my sister and brother. Okay, that last part was a joke. 🙂 They love us all equally! 🙂
I hear your conflict.
My guess is that your family does know and they are already concerned and worried despite your desire to spare them.
Speaking as a parent, it lessened my worry to have more information and education on this illness. I think it helps take away worry when you know there is something you can do– that you can play a vitally important role in helping someone you love get better. Worry is so much greater when you can’t talk about it.
I hope the best for you. I hope you do talk.
this post is very usefull thx!
Yes, my parents are aware because they confronted me a few years ago. I’m not sure if they think I’m “fine” now or what. The other day my mom asked if I was still seeing my therapist, but that’s as far as the conversation goes, thank God!
I wish they just thought I was fine because there really isn’t anything they can do to help me anyway. I’m 32 years old, so there’s not much my parents can do to take care of me.
I don’t think there is much more I can say except I think you are seem pretty smart and aware.
The one belief you have that I’d challenge you on is the last one. You might be surprised. Don’t give up on yourself. You deserve great health, both mental and physical. Don’t think of this as retreating to childhood by asking your family for help. Asking for support is an extremely brave and mature thing to do. It takes some time for the body and brain to heal. You deserve to give yourself that time and surround yourself with the support to do it.
Don’t underestimate the power of love and family. My best.
Thanks Anne. 🙂
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