It’s a strangely unsettling experience to read about research on an affliction that one has, to understand how scientists are obtaining insights into it using a variety of techniques that allow them to look past the walls of the human and into their mind, so to speak, with the intention of developing new therapeutic techniques or improving old ones. This is principally because it suggests, to me, that we – humankind – don’t scientifically know about X in toto whereas I – the individual sufferer – claims to understand what it is like to live with X.
Of course, I concede that the experiment in question is an exercise in quantification and doesn’t seek (at least if its authors so intend) to displace my own experience of the condition. Nonetheless, the tension exists, especially when scientists claim to be able to model X with a set of equations.
Do they suggest I’m a set of equations, that they claim to understand how I have been living my life for eight years using a bunch of symbols on paper through which they think they could divine my entire being?
I have been learning, writing and reading about physics for the last decade and have been a science journalist and editor since 2012. Experiences in this time have allowed me a privileged view (mostly for the short span in which it could be assimilated) of what the scientific enterprise is, how it works, how scientific knowledge is organised, etc. As a result, I believe I am better placed to understand, for example, the particular mode of reductionism employed when scientists simulate a predetermined part of this or that condition in order to understand it better.
This isn’t a blanket empathy, however; it’s more an admission of open-mindedness, such as it is. While not speaking about a specific experiment, I have come to understand that such de facto reductive experiments are necessary – especially when the evolution of certain significant parameters can be carefully controlled – because the corresponding results are otherwise impossible to deduce through other means, at least with the same quality. In fact, in my view, this is less reductionism and invisibilisation and more ansatz and heuristics.
This is why I also see a flip side: the way scientists approach the problem, so to speak, has potential to redefine some aspects of my relationship with the affliction for the better. (It was a central part of my CBT programme.) To be clear, this isn’t about the prescriptive nature of what the scientists have been able to conclude through their studies and experiments but about the questions they chose to ask and the ways in which they decided to answer, and evaluate, them.
For example, on June 17, the journal Nature Human Behaviour published a paper that concluded, based on reinforcement learning techniques, that “anxious or depressed humans change their behaviour much faster after something bad happens”, to quote from an explanatory post written by one of the authors. They were able to do so because, “for each real person – those with mood and anxiety symptoms and those without – we [could] generate an artificial computerised agent that mimics their behaviour.”
Without commenting at all on the study’s robustness or the legitimacy of the paper, I’d say this sounds about right from personal experience: I display “mood and anxiety symptoms” and tend to play things very safe, which often means I’m very slow to have new experiences. Now, I have the opportunity to conduct a few experiments of my own to better ascertain that this is the case and then devise solutions, assisted by the study’s methods, that will help me eliminate this part of the problem. As the same note states, “Developing a deeper understanding of [how] symptoms emerge may eventually allow us to close [the] treatment gap” (with reference to the success rate of CBT ∪ medication, apparently about 66-75%).
Which brings me to the other thing about research on an affliction that one has: it exposes you. This may not seem like a significant problem but from the individual’s perspective, it can be. When a discovery that is specific to my condition is broadcast, I often feel, if only at first, that I am no longer in control of what people do and don’t know about me. Maybe “it’s textbook”, as they say, but I will never acknowledge that about myself even if it is, at whichever level, true, nor would I like others to believe that I am as predictable as a set of equations would have it – but at the same time I don’t want anyone to believe the method of interrogation employed in the study is illegitimate.
Thankfully, this feeling often dissipates quickly because the public narrative, at least among scientists, who are also likely to be discussing the findings for longer, is often depersonalised. However, there is that brief period of heightened apprehension – a sense of social nudity, as it were – and I have wondered if it tempts people into conforming with preset templates of public conduct vis-à-vis their affliction: either be completely open about it or completely closed off. I chose to be open about it; fortunately, I am also very comfortable with being this way.
Science writer and editor in Bangalore, India.