This is National Eating Disorder Awareness Week — NEDAwareness Week
People come in a wide variety, don’t they? No one more deserving than another. Whether there are differences in skin color, differences in gender, differences in sexual orientation, differences in religion…or differences in IDEAS. And no matter the differences, no matter the variety, every body deserves a seat at the table. We may speak of the table as a place to eat, or we may speak of the table as a place to exchange ideas. It happens that this week we’re talking about both. Because we want to think about how NEW ideas and NEW approaches can bring NEW FREEDOM to people with eating disorders.
An eating disorder causes you to see food and yourself in a distorted way. A way that affects you both physically and mentally. That distortion creates distorted eating patterns. And those eating patterns can cause damage to your body and your mind… as well as your life expectancy. And of all the eating disorders, anorexia nervosa is the most dangerous. With its poor response to treatment, such persistence, such rigidity. It takes over. It’s exhausting. We need more effective treatment for anorexia.
Eating disorders affect 32 million Americans. Twice as many women as men. Whether it’s bulimia, binge eating, anorexia nervosa, avoidant/restrictive eating disorder, or others, the need to raise awareness for support, education, and especially effective treatment, is paramount.
And although we hate bad news, there’s more bad news. The death rate in women with anorexia is 10 times greater than in other women. One major reason is that the metabolic and medical problems caused by self-starvation can be critical, even fatal. And also because the desperation triggered by anorexia can lead to suicide… and often does.
So let’s talk about what an eating disorder is…and what it isn’t.
In general, a variety of biological, psychological, and sociocultural factors tangle together and lead to a disorder of this type.
The idea that eating disorders are a “girl’s disease” a disorder where a girl seeks her parents’ approval is false. Archaic. Fiction. Can you say Old Wives’ Tale?? Similar to some other diseases, there is a biological basis for anorexia — and genetic studies identifying the first 8 genetic loci! — that is exacerbated by sociocultural and psychological/psychiatric components.
And, by the way, let’s square off against the idea that eating disorders aren’t serious. They can, and often do, wreak havoc on you and the people who love you. They can interfere with your relationships, your livelihood, and your own sense of peace and self-respect. And they can tear down your health.
We need to up our game if we want to erase this hold they have on us, and erase the shame and stigma they carry. We need to up our game if we want to make headway in treating the most deadly of these disorders — anorexia nervosa.
Anorexia has the highest mortality rate of any psychiatric illness. (Or it did, until the opioid crisis recently claimed the lives of so many.) That mortality is caused by the medical consequences of binge eating, purging, starvation, over-exercising. And these consequences include heart attack, kidney failure, osteoporosis, electrolyte imbalance… and suicide.
Because of the stigma attached to eating disorders, early diagnosis can be hard to achieve. And early diagnosis is important for effective treatment. Because these disorders can begin at any age. And last for years
…and let’s get One Thing Straight Now:
Eating disorders are NOT a matter of choice. They’re diseases governed by physiology and biology, with genetic, social, cultural, and psychological factors. Help remove the stigma associated with eating disorders, to make the world a safer place for everyone… because every body deserves a seat at the table.
Stigma comes from ignorance. It’s the inclination to pour shame on anything not understood. And that shame can be crippling. It can force someone who suffers into hiding…isolation… when it’s light, enlightenment, and help that is so deeply needed.
When you’ve been isolated in the throes of shame, (and you know you haven’t done anything to deserve it!) it’s hard…really hard...to come out. Sometimes it’s hard just coming outdoors, for Pete’s sake! But sometimes, it’s coming out with truth about yourself. About your sexual orientation, about your habits, or about the way you think…or eat. It makes you feel vulnerable… and like you’re making yourself a target for hatred, stigma, and judgment.
Sometimes eating disorders live silently inside— and sometimes they can’t help but show themselves, and then the anguish, the anger, the frustration, and the way they take over your life becomes…unbearable. And stigma or not, you realize you just have to find help.
And especially, if you suffer from Anorexia Nervosa.
There is plenty of stigma about anorexia… and you may hear people toss the term around disrespectfully, because they don’t grasp the critical nature of the disease. If they suffered from it themselves, they would not speak hateful words in ignorance, because they, too, would be informed. But that’s the nature of the beast of stigma, isn’t it?
The death rate in women with anorexia is 10 times the death rate in those who don’t suffer from it. But every body deserves a seat at the table, a chance to live well… and not die from the critical medical conditions caused by self-starvation.
And again, remember that this self-starvation is not by choice, but is associated with genetic factors, and fueled by changes in the brain that happen in some women and men when they start to lose weight, get energized, and begin to exercise compulsively. And we recognize that there are a host of other factors that can contribute to a slow spiral, a continuous weight lose, the emergence of anxiety, fear, and rigid rules.
But sadly, the most distinctive and cruel of the symptoms of anorexia is the “anorexia voice.” A voice talking to you, controlling you, commanding you, every minute of every day, telling you what to eat, what not to eat, when to exercise, when to feel guilty, and on and on and on it goes.
Treatment is effective only when “the voice” can be silenced, and you are free to make choices you want to make. About food, about love, about activity… about hope.
So what can be done?
Sometimes if you have a new idea, it takes courage to offer it up — like Conflict Zone: A Play on Eating Disorder Recovery, a live-streamed one woman show with a compelling storyline about the lived experience of recovering from an eating disorder kicking off NEDAwareness Week — but it could be brilliant. It could deeply resonate. It could breed a whole new movement fueled by hope.
And while it may draw stigma and resistance from those who don’t understand the idea, those who need what the idea could provide grab onto that thread of hope.
We’ve had the opportunity to work with a few other researchers to write up and publish a case report that incorporated a specially designed modified ketogenic diet combined with ketamine infusions that resulted in complete remission of severe and enduring anorexia in a 29-year old woman who had been ill for 15 years. Striking. Striking that her remission is complete and sustained and has persisted now for over a year. (See our blog about Caroline).
The case report has taken off, generated a lot of interest (and a lot of controversy — as you might guess when we put a ketogenic diet and ketamine on the table). It’s nice to see the metrics climb, the interest rise, to see the hope bud in people with anorexia who’ve lost hope of ever beating it… and to see the sparks fly in the imagination of the scientists, doctors, therapists and dietitians who try to help them. Our case report was recommended by Drs. Miletta and Horvath in Faculty Opinions as a New Finding, Interesting Hypothesis and Technical Advance, and written up in a lovely Faculty Opinions blog.
So… we’re now following up with a small clinical trial involving more subjects which is registered on ClinicalTrials.gov. Because we need an N greater than 1. We need to see if what worked will work for more people with chronic anorexia. This next step will give us more information about the effectiveness of our new sequenced approach in the treatment of anorexia.
As you can imagine, we’re cautiously excited to see what we can learn. And we’re hoping to see more and more studies to support novel treatments for anorexia.
At Innovative Psychiatry, we’re so pleased to see people with severe treatment resistant depression, bipolar depression, social anxiety, PTSD, and suicidal thoughts achieve remission with serial titrated ketamine infusions.
When you consider that the first paper published using ketamine for the treatment of a psychiatric disorder was using ketamine infusions for the treatment of anorexia — unbelievable but true!– more than 20 years ago, it’s WAY past time for people with anorexia to have truly effective treatment options to help them achieve remission. Every body deserves a seat at the table.
We work to help you get the treatment that will help you with your symptoms and give you the freedom to live a rewarding life. In addition, we also work with our colleagues over the phone, email, and at conferences to learn all we can to better help you find remission. And, we pursue research opportunities to increase the medical knowledge available to all of us. For you.
Because every body deserves a seat at the table, including you!
We want to see you build a fulfilling life. That’s our heart in all we do.
So please call and let’s work together.
To the restoration of your best self,
Lori Calabrese, M.D.