I have been struggling with an eating disorder for the past few years. I am afraid to eat and afraid I will gain weight. The fear is unjustified as I was never overweight. I have weighed the same since I was 12 years old, and I am currently nearing my 25th birthday. Yet, when I see my reflection, I see somebody who is much larger than reality.
I told my therapist that I thought I was fat. She said it was 'body dysmorphia'.
She explained this as a mental health condition where a person is apprehensive about their appearance and suggested I visit a nutritionist. She also told me that this condition was associated with other anxiety disorders and eating disorders. I did not understand what she was saying as I was in denial; I had a problem, to begin with. I wanted a solution without having to address my issues.
Upon visiting my nutritionist, he conducted an in-body scan and told me my body weight was dangerously low.
I disagreed with him.
I felt he was speaking about a different person than the person I saw in the mirror. I felt like the elephant in the room- both literally and figuratively. He then made the simple but revolutionary suggestion to keep a food diary to track what I was eating.
This was a clever way for my nutritionist and me to be on the same page. By recording all my meals, drinks, and snacks, I was able to see what I was eating versus what I was supposed to be eating. Keeping a meal diary was a powerful and non-invasive way for my nutritionist to walk in my shoes for a specific time and understand my eating (and thinking) habits.
No other methodology would have allowed my nutritionist to capture so much contextual and behavioural information on my eating patterns other than a daily detailed food diary.
However, by using a paper and pen, I often forgot (or intentionally did not enter my food entries) as I felt guilty reading what I had eaten or that I had eaten at all.
I also did not have the visual flexibility to express myself through using photos, videos, voice recordings, and screen recordings. The usage of multiple media sources would have allowed my nutritionist to observe my behaviour in real-time and gain a holistic view of my physical and emotional needs.
I confessed to my therapist my deliberate dishonesty in completing the physical food diary and why I had been reluctant to participate in the exercise. My therapist then suggested to my nutritionist and me to transition to a mobile diary study.
Whilst I used a physical diary (paper and pen), a mobile diary study app would have helped my nutritionist and me reach a common ground (and to be on the same page) sooner rather than later.
As a millennial, I wanted to feel like journaling was as easy as Tweeting or posting a picture on Instagram. But at the same time, I wanted to know that the information I provided in a digital diary would be as safe and private as it would have been as my handwritten diary locked in my bedroom cabinet.
Further, a digital food diary study platform with push notifications would have served as a constant reminder to log in my food entries as I constantly check my phone. It would have also made the task of writing a food diary less momentous by transforming my journaling into micro-journaling by allowing me to enter one bite at a time rather than the whole day's worth of meals at once.
Mainly, the digital food diary could help collect the evidence that I was not the elephant in the room, but rather that the elephant in the room was my denied eating disorder.
The elephant in the room
Herd immunity is when a sufficiently high proportion of a population is immune to a disease, and thus form a protective bubble around those not yet resistant. But how is this bubble created? How long will it take? And how many critical cases of COVID19 are we willing to bear before deeming the cost of life greater than the debt to the economy? Now, different countries have their own answers to these questions. Yet, without data, their solutions are often no better than a well-educated guess.
So let's turn that guess into a clear plan. Up until now, this "invisible enemy" has been spreading both fear and anger throughout the world. It is leaving behind a trail of distraught families, overworked health care professionals, unstable politics, and millions unemployed. Our current measures of #stayhome, mandatory masks, and physical distancing are thankfully proving effective at herding the high-risk group to safety and tending to those already infected. Still, as soon as we open the gates (i.e. reduce restrictions on non-essential businesses), we can see the enemy creeping back in.
Only by making the invisible enemy visible can we start to generate an intelligent gate. By making COVID19 "visible" I don't mean the physical virus under the microscope; I mean its broader contours, those that cross borders, infiltrate cities and communities, and that disperse within patients. The dynamics of COVID on a personal and interpersonal level is what we really need to understand to be able to guide solutions on local and global levels. And to define these contours - reliably - we need data and lots of it.
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In our day and age, and more specifically, the current situation, data is worth more than oil (oil price: -$37.63 (Source: Nymex). The value of knowing who is most likely to get sick, how long they will be sick, and how much medical support they will need is priceless. Not only will this knowledge help us understand the virus better, but more importantly, it might allow us to recognise it sooner. We can then quickly identify and protect the high-risk population and potentially counter the negative behaviours currently testing the limits of our health care system.
The true beauty of data is, however, in its versatility and universality. In this modern-day, our technology has given us the upper hand to not only track and understand this virus, but to utilise and maximise the devices and software we already have. Who knew that your iPhone or Android may even play a fundamental role in the front lines of a pandemic? For example, newly developed user-friendly mobile data collection apps can be downloaded onto your phone and ready to track patient symptoms at the tap of a button. Even the World Health Organisation (WHO) sees the potential of these apps. It offers verified Case Report Forms (CRFs) to be integrated and used universally to immediately record patients symptoms at bedside, analyse and visualise the data, and ultimately share it with other researchers, clinicians, or hospitals.
Our goal is for our collective data to mirror the virus. Once we can accurately record and reflect the incubation periods, symptom progression, and recovery time of COVID19, we can use it to plan for a new “virus-free” future. We can then generate “intelligent” quarantines based on expected incubation, improve patient health with more efficient symptom criteria to the intensive care, and ultimately manage our limited medical resources for a more effective recovery.
Take Ethiopia for example, it has been regarded as a high-risk country, and with a population of 66,5 million herd immunity would require 39 million to be infected (assuming a required immunity to be 60%). At an expected 3,4% death rate, 132,400 people may lose their life in this pursuit of a safe herd. This number is considering no proper recording or monitoring of the virus. With data, collected and shared within the country, you can isolate clusters of cases before they spread, redirect scarce resources to vulnerable communities, and benefit from reported successful early interventions. In brief, data can save lives.
Sharing reliable and accurate data on this virus may be the crux to the pandemic. This current crisis is one of the most challenging of our generation, and everyone is affected by it, with some more than others, but precisely this difference between people is what we want to understand. Any delay in defining and decoding this virus is costing valuable time and lives. Simply put, no herd is safe if the shepherd has a blind spot.
Dear Digital Diary,
I realized that there is an unquestionable comfort in being misunderstood. For to be understood, one must peel off all the emotional layers and be exposed.
This requires both vulnerability and strength. I guess by using a physical diary (a paper and a pen), I never felt like what I was saying was analyzed or judged. But I also never thought I was understood.
Paper does not talk back.Using a daily digital diary has required emotional strength. It has required the need to trust and the need to provide information to be helped and understood.
Using a daily diary has needed less time and effort than a physical diary as I am prompted to interact through mobile notifications. I also no longer relay information from memory, but rather the medical or personal insights I enter are real-time behaviours and experiences.
The interaction is more organic. I also must confess this technology has allowed me to see patterns in my behaviour that I would have otherwise never noticed. I trust that the data I enter is safe as it is password protected. I also trust that I am safe because my doctor and nutritionist can view my records in real-time.
Also, with the data entered being more objective and diverse through pictures and voice recordings, my treatment plan has been better suited to my needs.
No more elephants in this room