Tetyana, thank you so much for agreeing to this interview! I’ll be honest. Narrowing down my questions was difficult, but I’d like to start with the origin of EDs. When trying to understand the origin of EDs, phrases like “perfect storm” are thrown around. Can you tell us what that really means?
I don’t actually hear that term very frequently, but it refers to the fact that eating disorders – like most other mental and physical disorders – are the result of a complex interaction between our genes and the environment. A phrase I like more is: “Genetics loads the gun, environment pulls the trigger.” (I do dislike that both refer to violent events or violence.) There is a range of genetic and environmental factors that can predispose an individual to develop an eating disorder; it is not a “perfect” storm as much as it is a range of conditions, on the genetic and environmental spectrums, that predispose someone to develop an eating disorder. I think it is important to emphasize that genes code for proteins, not complete behavioural traits, but in concert, our genetic makeup plays a big role in how we process information and respond to it — how we feel, think, and/or behave. Differences in various genes can affect these processes – sometimes in subtle and sometimes in not so subtle ways. The environment – and that includes the environment in utero and early childhood experiences – can interact with and modulate the way our genes are turned “on” or “off” and further shape how we feel, think, and/or behave. These complex interactions, which we do not fully understand, predispose some individuals to, for example, develop an eating disorder. But it is important to stress that when we talk about genetic predispositions, environmental stressors, or the effects these have on the brain, we are not talking about things that are permanent and unchangeable; they are not.
People with eating disorders suffer quite a few consequences, but continue to engage in the behaviors. Can you speak to the factors that maintain an eating disorder.
With respect to maintaining factors, I can only really speak about restricting and bingeing/purging behaviours mostly because that’s what I experienced and what I tend to read about. I think the behaviours (restricting, bingeing/purging) become negatively reinforcing, by which I mean that they remove a negative or unpleasant state. The removal of an unwanted state (anxiety, for example) ultimately leads the individual to become compelled to engage in those behaviours, especially when they find themselves in those states (and of course that state could be constant, too). That’s just a component of what maintains it – there are others, of course. After a while some things become habits and environmental associations (bingeing/purging whenever in a particular setting) also form. Moreover, restriction alters the way we think and process information, and all sorts of other things. But I think the power of the behaviours to remove a negative state – even if just momentarily – is one of the biggest factors that maintain the disorder. In some ways the behaviours mirror addiction, I feel, though I wouldn’t extend that analogy further than it can go.
If you could change two things about the way eating disorders are treated, what would they be and why?
I think the biggest problem in eating disorder treatment is not the way they are treated but the fact that many sufferers (a) do not get the treatment they need and/or (b) do not get treatment quickly enough. Appropriate, sufficient, and timely treatment needs to be available to more people. People should not have to wait two years to get a spot in a treatment program. People who are struggling should not be made to feel that they are “not sick enough” to warrant the treatment they need. We cannot control our genetic makeup, we cannot control our family history, and we often cannot really control our environment and the events that happen to us, but as a society, we really can make treatment more accessible and more widely available.
Any given paper on eating disorders points to a “significant gap” in the literature around the origin, maintenance and treatment of EDs. What would you say is the biggest gap and where is the most need, in terms of research?
I do not actually think there are as many gaps as often portrayed – not as many as people sometimes think there are, anyway. And I guess it comes down to a question of priorities: Do we know a lot about the causes of eating disorders on a genetic and neurobiological level? No. Do we need to know those things in order to effectively treat eating disorders? Well, not really. People have recovered and will continue to recover without this knowledge. We know enough to make sufficient strides in the most important thing, at least on a clinical level: making full remission a real possibility for a lot more people. I am very interested in eating disorder causes and maintain factors, but when it comes to improving treatment outcomes we already know enough to make an impact. We know that one of the main predictors of recovery (that is within our control) is illness duration. The shorter someone has been sick, the more likely they are to fully remit from the disorder. We know that much, and that’s enough, right now, to really make a big dent in pushing long-term recovery rates up.
And I want to be really clear here: I do NOT, in any way, want to suggest that we shouldn’t be funding basic research nor do I mean to imply that we should stop trying to find treatment tools that will help individuals who have been sick for a significant amount of time recover. I love basic research, and I love good research. It excites me a lot. I think it is incredibly important and it shouldn’t be an either/or thing: either money for basic (or clinical) research or money for treatment programs. But I don’t buy the idea that we need more research in order to see full remission rates go up.
In terms of gaps in basic research, it is hard for me to say where it is needed the most because that depends on the end goal. I can talk about what I think would be really interesting to explore, though. I am interested in genetics and neurobiology, but I don’t think the tools (at least neuroimaging tools) we have right now are sufficient to untangle things at the level that interests me, personally. Something that’s more interesting to me personally and, arguably more doable, are questions surrounding diagnostic crossover: Why do some individuals crossover and others don’t? Can we predict who will and who won’t experience crossover at an early time point, and can we use that knowledge to help in treatment? What happens during diagnostic crossover OR during rapid shifts in behaviours (restricting for a few weeks, then bingeing/purging for a few weeks, or even changes throughout the day)? What do these shifts mean for personality and temperament traits (rigidity versus impulsivity, for example)? Mainly: How do we connect the dots and explain the differences we see between AN patients and BN patients in personality and temperament and in the prevalence of various psychiatric comorbidities with the fact that so many AN patients eventually crossover to BN? What does that mean in terms of ED causes, maintain factors, and eventual outcome? These questions really interest me personally.
I also have a hypothesis that I’m waiting for someone to test, which is as follows: I suspect that the onset of bingeing behaviours in an AN patient who has been ill for, say, 3-5 years with AN, is predictive of a better outcome (eventually, like 10-20+ years down the road) than for someone who, 5 years after becoming ill, does not develop bingeing behaviours. I’m waiting for someone to test this. (Always important to stress that I’m talking about general trends in large sample groups, not any individual person per se.)
Finally, Tetyana, I’d like to ask a personal question, if you do not mind. You have shared that you are recovering yourself and you’ve personally experienced different levels of care. Would you explain the role your passion for science and your blog has played in your recovery?
I am passionate about science because I am a firm believer that the scientific method is the best tool we have to uncover truths about the world. I try to hold onto my Sagan-esque passion for science. I think having a passion is always helpful in recovery; it can help keep someone keep being in recovery.
With respect to the blog, it is hard to say how it impacted on my recovery – it probably played a neutral to slightly positive role. The experience in general has been hugely positive, and being involved with something that is so fulfilling and so rewarding is, of course, good for anyone’s self-esteem and mental health! But in that sense, it played the same role as doing other things I find really fulfilling.
It is part of the package of how I’d like my life – both day-to-day and in the long-term – to proceed. I’ve made a lot of conscious choices about how I want my life to be structured (and I’m particularly lucky to have the privilege and ability to do so), and doing science blogging is part of that picture, but not a major part. I started the blog when I was particularly frustrated with graduate school. I just wanted to have something I can work on after a week of failed experiments that amounted to me feeling very unproductive and generally low. I thought of it as my little project and if it went well, I’d continue, if not, then, oh well. I got way more positive feedback than I ever expected, and so in that sense it is been amazing. I especially love that the comments on the blog posts are intelligent and interesting, and the diversity of readers — from those personally affected with eating disorders, to carers, clinicians, and researchers — it is amazing. I love criticizing papers (I always loved journal club), I enjoy coding/playing around with PHP and HTML, making figures in Illustrator, and obviously I like editing, so it is a nice mix of all of these things I like.
In terms of recovery, I don’t have any secrets. I don’t consider myself recovered; I am not. I just don’t find my eating disorder really gets in the way of things. It doesn’t get in the way of my social life, or anything. I am not overwhelmed with thoughts of food. I love my body. I maintain my weight, and eat what I want. But I’m not free every behaviour, and I do need to make sure I eat enough otherwise I easily slip into eating less, just by accident/habit. Being mindful of my mental state helped me a lot, doing things I find really rewarding also helped me a lot, and being in an amazing relationship also helped — a lot of things in tandem, really. No magic bullets.
I’d like to thank you Tetyana for sharing your thoughts with us today! Your honestly and blunt style is much appreciated. Also, You do a remarkable job and the ED community is very lucky to have you to keep us informed! For more information, please visit Tetyana’s blog Science of Eating Disorders, where she and other contributing bloggers explore the research around eating disorders.