The Prodigious Professor
Professor Cynthia Bulik has never suffered from an eating disorder but she knows all about them.
This firecracker biologist, psychologist and PHDist has dedicated her life to understanding the mysterious disorders that involve food, or lack of. She should be up for a Nobel peace prize for the work she’s doing investigating genes associated with eating disorders except nobody wants to acknowledge this disorder. It’s still the unspeakable subject.
Her goal is to see people ticking ‘Eating Disorder’ just as easily as they tick asthma on forms.
She’s got a lot of work to do.
Cynthia is a Distinguished Professor in Eating Disorders (the only one in the US) at the School of Medicine at the University of North Carolina, Founding Director of the UNC Center of Excellence for Eating Disorders, Professor of Medical Epidemiology and Biostatistics at the Karolinska Institute in Stockholm, Sweden and a Professor of Nutrition also in North Carolina. She has written six books , has a gold medal in ice dancing and received nine awards for her work, which you can read about on her site.
Spending her time between the United States, Sweden and New Zealand she is a busy woman. She’s mighty. And she’s awesome.
Cynthia has just announced a worldwide call to all those who have, or had anorexia, to participate in the world’s largest survey into investigating eating disorder genes. Next will come bulimia and binge-eating. It’s very important work.
I went to hear her talk while she was in New Zealand and then we chatted.
1. Why do we still not talk about EDs?
Mental illness has stigma and eating disorders has stigma on top, so it is double stigma. If we have a colleague who is depressed, or doing drugs or an alcoholic, we have a script of how to say something. But with Eating Disorders we are so hesitant to say anything. When I started in my current job, a med student had died form anorexia and all the other physician teachers knew but nobody said anything. It shows it’s the next frontier – how do we talk to people about it.
2. Was there stigma in the medical profession when you decided to dedicate your life to this subject?
I was at a psychiatric institution in Pittsburgh that had strong research and strong clinical work so it was a very positive thing when I started. But a lot of people (still) question is it really a mental illness. I’m still fighting that ball game.
3. What was your motivation to do move into this work?
My boss, at the time, was asked to write a chapter comparing sleep disorders, depression and anorexia and at the time I had decided to specialize in adolescent depression. He said, “I don’t have time to write the chapter can you help me?” But I couldn’t write a chapter without knowing what it was about. I shadowed the psychiatrists and all these girls who were around my age but a lot thinner. And I didn’t now anything about Eating Disorders at that point.
Except I had been a competition figure skater so I knew a lot of people I had trained with, who would lose weight and sort of disappear but nobody talked about it. They were too weak to skate. And I had one friend who had a padlock on her refrigerator and if we wanted to eat something we had to ask her mum for the key. Her mum explained that she would binge eat and vomit it all up so she kept the fridge under lock and key (not that she called it bulimia at the time). So my academic world and my sport world converged and put this amazing puzzle in front of me and I’ve been trying to figure it out ever since.
4. Did you find any of it hard to understand?
There are lots of people in my field who do not like working with Eating Disorders. I spend a lot of time talking to patients and families. There are things about their position that on the outside it’s hard to understand. When you see somebody emaciated and they look in the mirror and they see fat – well we have to agree to disagree. I have to respect the fact that what they see is real. I found it fascinating to find out – what do they see in their brains that changes the way they see themselves?
5. If it’s difficult for the medical profession to talk about is it equally hard for parents to say anything?
Yes. Freud said the first ego is a body ego. Whether we like it or not our identity encompasses what we look like. Where as with alcohol or cigarettes it’s an external thing. The judgement is not about our container, our shell.
6. We’re told there are up to six factors that lead to an eating disorder: culture, family, personality, biology, genetics and trauma. Can you talk about the relative weight given to each?
There is no one algorithm and it differs with different people. There are plenty of people who have the same traumatic background, family background and cultural background and some develop no psychiatric disorders. Some might develop bulimia, some might get depressed. And others won’t develop anything. What is behind this resistance? I think genes play an important role. And if anything we have put them too low on the priority list in terms of this risk mix and we need to think harder to understand why someone with a certain genetic risk profile is more vulnerable to those other dimensions. That’s why it’s so important to understand more.
We’re behind the game in terms of other disorders like depression and schizophrenia because of the stigma around Eating Disorders. When I applied for my first research grant, people said to me “of all the genetic disorders people think Eating Disorders aren’t genetic.”
Around 60 per cent of people with a family history of anorexia develop the disorder. Yet while genes load the gun, it’s environment that pulls the trigger. You can walk around with a loaded gun your whole life and if you don’t have an environmental trigger you’ll never get a disorder.
7. So diets are one of those triggers?
Yes one of those triggers is a diet. If you have a history of food struggles, binge eating, restricting, then putting your child on a diet might trigger the behaviour. If children have the biological predisposition to develop an eating disorder but are never put on diet, it might never happen.
If you take a classroom of 11-year-old children and put them all on a diet over a week, by the weekend 89% will be fine, 5 – 10 % will binge on food and 1 % will love the feeling of starvation.
8. Does that mean the biggest message we should be saying to all parents is don’t put kids on diets?
It’s difficult right now with the war on obesity but that’s right. Healthy food, healthy physical activity.
9. Anorexia has the highest mortality rate than any other psychiatric disorder. Are suicide rates high across this group?
The average suicide rate is a bit below 2%. Anorexia is almost 8%. Anorexia with binging is almost 14%. Both anorexic and bulimia is 18%. Bulimia is 13% and binge eating almost 14%.
10. Now we’re seeing older women with EDs (60% over 35 yrs in your treatment centre). Why is that?
Dieting, plastic surgery, beauty products, so many are directed towards middle aged women. It’s easy to foster discontent in them as their bodies are aging and they have more money to spend on those products and solutions than adolescents. So they get up hit up. And they feel dissatisfied. And we’re seeing an increase in them trying to fix that.
11. You say family based treatment is best for anorexics – is that the same for bulimics and binge eaters too? Why is it so important?
I am not sure how this is going to sit with you (given your blog name etc!), but I steer away from calling people by their diagnostics labels—so I don’t refer to people as anorexics or bulimics. But rather as people with the disorder. I just think they are so much more than their disorder, I don’t want to slap a label on them as if that is the most defining characteristic about them. After all…that is the POINT of your blog!! So this is not a criticism (in any way) I am just telling you what I do personally!
This answer is just data based. If you look at the evidence base reviews for the treatment of anorexia nervosa in youth, FBT comes out on top—although it is not perfect—it works for about 40-50% of cases. For ADULTS with anorexia nervosa, the evidence base is much weaker. Cognitive-Behavioral therapy seems to help after weight gain and a treatment called Specialist Supportive Clinical Management (developed here in Christchurch by our team) also seems to hold promise. For binge-eating disorder, CBT seems to have the strongest evidence.
Although—we have developed a couple-based treatment for all three disorders (UCAN for AN) and UNITE for (BN and BED) and including the partner in treatment seems to give a substantial boost to outcome!
12. Are bulimia and binge eating disorder a form of addiction?
People really gravitate toward the addiction model of binge-eating type disorders. There are similarities—but just because there are similarities does not mean that we have to merge them under the same umbrella. There is a HUGE difference—that is that you can abstain from alcohol, cigarettes, drugs for the rest of your life, but you cannot abstain from food. Those other addictions deal with EXTERNAL and non necessary substances—food is necessary! So major difference.
13. You are busting the myth that EDs are a choice. Can you explain this more – I was put on a diet (not my choice) but it was my choice to purge 10 years later. Does removing the idea of choice remove a sense of accountability and responsibility in those who suffer from them?
Of course there are choices along the way. Recovery is indeed a series of choices—some of them very difficult as it is often easier to slip back into familiar and unhealthy behaviours that make the difficult choice to change behaviors. I think we can have all sorts of illnesses that we do not choose to have, but we are still accountable for. An example, I have a herniated disc in my back. It was not my choice to have that injury, but it is my responsibility to do back exercises every day of my life and to avoid situations that could exacerbate the pain.
Purging is interesting. Believe it or not, twin studies say that it is heritable. We all vary in our ability to self-induce vomiting. What forces led you to purge but did not lead other people to purge-they would be a combination of environment (you had to get the idea from somewhere!) and genetics (being physically capable of doing it). So again we see that complicated convergence of genes and environment that play into who engages in what behavior. You can make choices not to engage in bulimic behaviors (or anorexic behaviors), but once they are established that are hard choices to make because you are fighting your biology. That does NOT mean that you should not make them—it means that you need all of the tools and support you can garner to help you to make the healthy choices!
14. If genes load the gun are cultural messages in the media pulling the trigger?
We absolutely positively need to reduce the number and nature of these societal messages that pollute our environment. As I mentioned in the lecture, they have no code and no one is immune. Where they see a market, they will seed discontent in order to sell their products or procedures. I wrote about this a lot in The Woman in the Mirror. There is no better way to make someone buy a product than convince them they are dissatisfied with some aspect of their physical appearance that they might never even have given a second thought to. They plant little memes in our heads and then we look in the mirror an say “Hm..gosh, they’re right, I really don’t like that about myself” and go out and spend $$$ on some product that will allegedly fix it!
15. Could you guess at what impact the media have on EDs?
As above—part of the whole “trigger” machine. Glorifying bodies and physical appearances that none of us can achieve naturally. Playing into discontent and leading people to engage in behaviors that increase the risk of developing eating disorders.
16. What about children of Eating Disorders sufferers. Aside from never putting their kids on diets, is there anything else they need to be wary of?
They should just be vigilant. Listen for signs of body discontent. Pay attention if they fall off the growth curve or begin to restrict certain foods or food groups (not because they dislike the taste, but for weight loss purposes). Parents can and should ensure that their children are getting balanced nutrition—to often we let go of that control too soon and they are not yet prepared to take on that enormous responsibility of nourishing their bodies appropriately. Make sure you praise your children for things other than physical appearance—be careful with always saying how pretty or how handsome they are (of course it is OK sometimes) but balance it with compliments about their personality, their intelligence, their compassion, what a good friend they are, what a great athlete they are or musician, or artist! We need to value them for the whole package, not just the wrapping!
17. Did you ever worry about your daughters?
Of course—my daughters and my son. Eating disorders don’t discriminate. I am a mother, I worry about everything—not just eating disorders!
18. Do you think it will be the same gene for anorexia, bulimia and binge eating disorders (that might be too simplistic of a question, I have a lot to learn about genes)?
Remember that it will probably be hundreds of genes. There is no way that a single gene could cause anything this complex. From twin studies, we know that anorexia nervosa and bulimia nervosa do have shared genetic factors, and we know that 50% of individuals with AN develop BN at some point in their life—so my guess is that there will be some overlap, but probably also some genes that are unique to each.
20. Finally, do you have any message for bulimics out there who have suffered, (in shame) and silence?
I don’t know if you get the Katie Couric show down in New Zealand, but when I was on her show—it was Katie, Demi Lovato, a young girl with an eating disorder and me as the “doctor”, Katie told the world about her history of bulimia. Demi was completely forthcoming about her eating disorder and self-harm, and the young girl also told her story. Katie was a role model to Demi; Demi was a role model to the young girl; and I saw mentorship in action. Only by sharing their stories could they help others.
I look forward to the day when it is as easy to tick “anorexia nervosa” for “bulimia nervosa” on a health survey as it is to click “allergies” or “asthma.” In our own ways, you and I are working toward that goal!
Thank you so much Cindy. You, and your work is an inspiration and keep up the good fight.
FABIKs please share this interview – Cynthia needs more participants in the biggest worldwide study into the genes connected to anorexia. It’s called ANGI and you can contact them in Australia or in NZ or in the United States.
- Did you see this brilliant, heartfelt open letter from Caitlin Moran to teen girls – my new favourite baddass feminist.
- And FABIK was on the Huffington Post last month. Sheesh. Please please please if you enjoy these posts make a comment, let us know they’re being received, or share with other people who might like or get something from them. Peace.