“I’ve been in therapy for 18 years, and I’ve still got a pretty significant case of Anorexia.”
Recently, these words were uttered to me over the phone by an adult with Anorexia Nervosa (AN) who was desperate for help. A successful professional and devoted mother to three young daughters, she, like so many who suffer from AN, seems to “have it all.” Her husband was aware of her illness – he had attended a few therapy sessions – but it was never discussed openly. Although he was terrified that she would die, he had no idea how to help her. In fact, he had been advised by her former treatment providers that he should not try to “fix” her – that was her job. Like most men, he was begging for something concrete, a specific job to do, something to latch onto and work towards to help save his precious wife.
“I know my life inside and out,” this woman told me. “I have so much insight. It just hasn’t gotten any better.”
If someone has been in therapy for 18 years – or even 18 weeks – there should be marked, measurable improvement. Even 18 days into treatment, there should be something concrete – a written treatment plan, psycho-education for the patient and family, recommendations of reading materials and resources, development of specific goals. There should be hope. Psychotherapy research has shown that the instillation of hope – which is one common factor present in all types of psychological treatment – is the predominant mechanism of change in the first few weeks of treatment.
If someone who is suffering from a life-threatening, soul-killing mental illness for 18 years without making any improvement, where is the hope? How can someone possibly have hope that their condition will improve when they have been dutifully going to therapy with eating disorder experts for almost two decades? In the amount of time it takes to raise a child from birth through high school graduation, there has been no measurable change. Can you imagine such an interminable, grueling, agonizing battle?
In these chronic cases, inevitably the patient begins to blame herself. Her family, once supportive and nurturing, becomes paralyzed with guilt and fear, with anger and frustration. They, too, lose hope.
Let me tell you this: if you have been in treatment for 18 years, 18 months, even 18 weeks, and your condition has not improved, TREATMENT HAS FAILED YOU. No matter how long you have suffered, no matter how many treatment programs you’ve been through, or how many therapists you have seen, or how many relationships have been destroyed by this horrific illness, THERE IS HOPE.
New science offers hope for people with AN. We know so much more now than we did even 5 years ago. This new knowledge is power – it is ammunition against even the most severe, chronic, “treatment resistant” cases.
If you have been in treatment for a significant period of time without improvement, please do not blame yourself. It is your treatment team’s job to help you get well. Even if you don’t want it. Even if your motivation wavers. Even if you are ambivalent about change. These feelings are symptoms of the illness, and you deserve treatment regardless. If your therapist is kind and warm and empathic and you have wonderful relationship, that is terrific – but these things alone will not get you well.
You need a treatment team that will stand up to AN; a team that will insist upon prompt nutritional restoration, achievement of your optimally healthy body weight, cessation of eating disorder behaviors, skills to cope with unhealthy thoughts and negative emotions, and treatment of any comorbid psychiatric conditions.
If your clinicians have not been able to help you, I beg you, I implore you, to find a second opinion. Find a third, fourth, fifth opinion if needed. You deserve effective treatment, and you need something concrete – a specific plan – to help you reach full recovery.
16 Replies to “Got Hope?”
I had an ED for almost 20 years. I was never diagnosed, because I never sought treatment, until 5 years ago. My ED has never been “bad,” but when I look back on how much I’ve changed in the past 5 years, I can see how crazy I was with my ED. I am still in treatment and still get weighed every other week, but I am much less obsessive than I was and I am not stepping on the scale constantly. (I used to weigh myself at least 50 times per day, now it’s once or twice a week).
I love my therapist (she specializes in EDs) and she is doing what she can for me. I still am not really willing to rid myself of this because I’m still not really willing to gain weight, and I think that’s the problem. She’s highly qualified and we have a great connection and I have made improvements, but I can only improve as much as I’m willing to. I never believe her when she says I have AN because in my mind, I should be severely underweight to have AN. I feel like I should look the part. She still says I need to gain weight, but I disagree.
I’m really enjoying your blog Dr Ravin… Thank you.
I had a relapsing course of restricting anorexia nervosa (AN) for 28 years before receiving any help that was of use. During those 28 years I remained significantly underweight (sometimes dangerously so – i.e. BMI < 13) and as time wore on, my physical state became increasingly compromised. I was 'treated' for some of the physical complications of long-term semi-starvation, yet a number of medical professionals deemed me 'chronic', or stated that I would only get better "when I decided to".
There was no way that I could get better on my own…. It was not that I didn't know what to eat to gain weight; it was that I didn't know HOW to eat more food without feeling panic-stricken. That level of panic was so great at times that I felt suicidal. And it was not 'about' body image. AN in anxiolytic.
The key to recovery from long-term AN is de-sensitisation to the panic associated with eating and weight restoration. I have had therapy too, which has been enormously helpful, but therapy without weight gain is pointless.
I, too, am learning so much from your blog and have a link to it on mine. Until today, I have found myself enthusiastically supporting what you write. Today, though, I found myself frustrated and angry. I do agree that the concept of a team is so important; in fact, I posted about this. But my daughter, too, has been fighting anorexia/bulimia for more than 20 years and all stops have been pulled out along the way to try to help her, to date to no avail. Everyone involved HAS done their very best and yet she is further entrenched than ever. I think Extra Long Tail has snagged the concept in the final two paragraphs of her comment to your post. “The key to recovery from long-term AN is de-senstisation to the panic associated with eating and weight restoration…. therapy without weight gain is pointless……AN is anxiolytic.
Nothing yet has quelled that anxiety for her. That plus her co-morbidity rules.
Extra long tail and Jen,
I agree wholeheartedly that desensitization to the anxiety/panic is essential to recovery from AN. Without that desensitization, without learning skills to manage and cope with anxiety, the AN will continue to be a powerful force.
Dr. Ravin, would you and/or Extra Long Tail speak to what you believe “works” re desensitization. DBT seems to be the most effective means in my daughter’s case (mindfulness, as well).
Both of you may have already written about this already on your blogs. Would you please provide me with links to pass along to the team.
Short of putting a person in a coma and feeding them until they are nourished and then medicating them to the point of not caring about anything, what else? I am not being cynical or sarcastic here. There must be a gene that she didn’t get that I had to break free of this awful disease.
PS ELT – may I quote you?
Hi Jen, yes you may quote me…
Here is how I see de-sensitisation to eating in (restricting) AN:
I see it like treating a phobia. When I was a teen with AN – and later when I relapsed badly in my 30s, I looked at food as if it were a plate of maggots. Food filled me with disgust and horror. My psychiatrist told me that the more I avoided food, the more I was (in effect) ‘rewarding’ my brain. I had to feel anxiety in order to overcome it.
Repeated exposure to the same stressor (food) then evokes an anxiety response of lower magnitude. He was right. I was terrified of eating (e.g.) a whole banana when I was really ill with AN. Now I readily eat a large pizza and a gooey dessert without any anxiety.
The only time I struggle with food nowadays is if my mood drops. This happened recently when I had flu and tonsillitis. My mood dropped so low that anorexic thoughts returned. Fortunately I was able to extinguish these thoughts quite quickly with help from some FEAST friends who reminded me that eating is non-negotiable…
My daughter, 41, has been suffering with an ED for more than 20 years. With the exception of a 5 month stay three years ago at NYSPI, when she reached 90% of her goal weight, for the past dozen or so years she has never weighed more than 65lbs (she’s 5’2″). She’s been in and out of more IP treatment programs then I can remember, and has had many years of outpatient therapy. Her AN, combined with OCD, anxiety, and depression, led to the failure of her marriage, her inability to maintain stable relationships with her 2 sisters and me, and she has never been able to hold down a real job.
You’ve proposed that she (the generic “she”) probably hasn’t received proper medical/psychological treatment if she hasn’t made any progress. Isn’t it possible that she is so treatment resistant that no more form of treatment would help?
Desensitization involves first learning skills to cope with anxiety (this is where the mindfulness and distress tolerance components of DBT are helpful, along with deep breathing, visualization,and progressive muscle relaxation from CBT). Then, once you have acquired anxiety management skills, you construct a hierarchy of feared foods and feared eating situations (e.g, restaurants, eating at a friend’s house, eating between mealtimes) in order from least scary to most scary. Then, you gradually begin exposure therapy, starting at the bottom. Once you have mastered a lower item (e.g., can do it with minimal anxiety), you move up to the next scarier item. It usually takes repeated exposure to each item in order to desensitize – maybe 10 or 20 or 30 exposures. Once you have mastered an item, you work to incorporate it into your daily life. For instance, my patients typically have an exposure log which requires them to eat at a restaurant once a week and enjoy a fun food (such as ice cream) once a week. Some patients need anti-anxiety meds at first in order to enable them to even contemplate doing the exposures. As time goes on, they taper off the meds and do the exposures without them.
I am so sorry to hear that your daughter has suffered for so long. To answer your question, yes, it is possible that no further treatment would help her. It is also possible that she could recover with better treatment, and I choose to believe the latter. I would recommend reading June Alexander’s blog and books: http://www.junealexander.com. She suffered from AN and BN for 40 years, beginning at age 11, and then finally recovered in her 50’s or 60’s. It is possible. There is hope.
I believe that labeling someone as “treatment resistant” is a disabling and self-perpetuating myth. We are not talking about ALS or Huntingtons or terminal cancer. We know for a fact that AN can be successfully treated when a patient is required to consume full nutrition, full time, maintain 100% ideal body weight for long enough for the brain to heal, and engage in therapy to learn coping skills and build a life worth living.
I wish you and your daughter all the best.
Unfortunately, I think the real cause and treatments of anorexia are just evolving. Let’s hope that we gain momentum and that years and years of suffering will no longer be the norm.
There is hope for everyone if they can get to the right Doctor and have adequate support.
I have referred to Doctor Ravin in recent times. If I would have known about her when my child was going from place to place all over the country, I would have moved to Florida.
My heart goes out to all the sufferers and families and I still sleep lightly as our Recovery has only been about 6 months.
Anyone who needs someone to talk to, email me and we will setup a call. I am here to help anyone I can with encourage and support.
Karen Barber, a Mother, Writer, Eating Disorder Actionist
Dr. Ravin, I may be one of your biggest fans.
I did a post on my blog where you were mentioned. Thought you would like to see:
I continually recommend you because I believe you care and you are on the right track.
Thank you for all you do for the very youngest who suffer from this bitter back biting disease.I am 55 years old and have suffered 12 years and about the only dish of hope I get and lap it up is when I visit your site.It gives me a reason to hang on .Thanks again
Hi Dr. Raven,
What a wonderful post! I am a psychologist who also specializes in eating disorders in the St. Louis area. I find the assumption that clients can’t fail treatment so helpful. That loss of hope is so understandable when one has struggled for so long, but it is definitely not a helpful way to view treatment. We have a DBT program for ED and I wanted to share a recent blog post about the assumptions of DBT. We review these weekly in team, and I must say these assumptions have made me a much better therapist, and person really, as I do firmly believe there is hope for everyone. Thank you for your post… we may add it to our site if that’s alright with you!
Yes, please feel free to share this post with anyone whom you think may benefit!
Dr. Ravin, Hope all is well with you. I have a question. Since our family had such bad experiences with Inpatient and Outpatient Treatment Centers from one coast to the mid-west, I have eluded research on these types of organizations.
If you had a loved one that needed inpatient treatment, who would you recommend that is like-minded like us?
Thank you again Dr. Ravin.
If I had a loved one who needed inpatient treatment for an eating disorder, I would recommend that they seek treatment at one of the following programs:
Kartini Clinic (Portland, Oregon)
Children’s Hospital in Denver, Colorado
Eating Recovery Center in Denver, Colorado
There are very few inpatient treatment programs, and no residential programs (to my knowledge), with treatment philosophies congruent with mine.
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