A Reflection on How COVID-19 Health Communications Could Be Done Better
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
I know when you boil it down, people are just numbers.
Around 7.846 billion people on Earth.
Around 131,342,071 cases of COVID-19.
Around 2,853,631 confirmed deaths also because of COVID-19.
Statistics are just numbers with the tears dried off.
But seriously, what are 2,853,631 (two million eight hundred and fifty-three thousand six hundred and thirty-one people)? I spelt it out to magnify it because these numbers are people.
People that were sick.
People that died.
If that is hard to get your mind around, then how about this:
To help you wrap your head around mind-boggling numbers and put them into perspective, let us convert the numbers into faces.
The communications around COVID-19 have been shameful at most.
Presented coldly as mortality rates.
It makes it easier to swallow when a person is a number.
But what if that number becomes you?
Isn’t it disheartening to think that just because it is easier for those of us surviving to swallow, we convert heartbeats into deathbeds by converting faces into numbers?
I want to see a section on the news called ‘COVID-19 too soon’ dedicated to those we lost during the pandemic.
I want to see hospital walls decorated with plaques containing the names of healthcare workers who lost their lives saving others.
I want to see trending Tweets from ordinary people affected by the pandemic that would have been considered by science “too healthy to get sick”. Perhaps with the hashtag #toohealthytogetsick.
I want a bereavement support platform for all those who have lost a mother, a father, a grandparent, a friend, a spouse, a lover, or a loved one to COVID-19 called COVID-RIP.
Instead of all the Zoom calls trying to continue with work and life as if nothing is happening, I want a Zoom call for strangers who are lonely because of lockdowns just to have someone to talk to.
Instead of all the epitaphs, I want to read love letters about lost loved ones.
Think of a public health campaign that says, ‘My grandmother loved butterflies. She was amazed by their transformation. Their beautiful colours. Their uniqueness. She is no longer there to see the butterflies in our garden. She is now the butterfly. Wear a mask so you will not have to fly away too.’
Think of how public health statistics would change if we could all see the stories behind the numbers.
I want to read the stories behind the statistics.
This pandemic has shown us that it is as much as a communication crisis as it is a public health crisis.
Having the right communication from the right people to the right people at the right time can save lives.
We need to stop resorting to people who have died as numbers or statistics lest we feel something.
We need to stop hiding behind the excuse of patient confidentiality to avoid talking about humans simply as humans.
We need to stop being afraid of our emotions.
We need to know peoples’ stories.
We need to remember peoples’ names.
We need to inject more humanity into our health care systems.
We need to revolutionise health communications through humanising people.
Referring to people as numbers literally dehumanises them.
People are not made of numbers.
They are made of stories.
They are made of scars.
They are made of stars.
They are made of anything but statistics.
Let us shift the paradigm where people are not just counted but rather where people actually count.
Can we start a COVID communication revolution called ‘My Name Was’, where we honour those who lost their lives by sharing their stories? Not just how they died because that is the last page of the story. But how they lived. What legacies they left behind. How they want to be remembered.
I know this may sound grim.
I know this may hurt.
But I want to tell you that it is okay to feel other peoples’ pain as if it is your own.
Emotions are what humanise us.
Stop trying to silence them.
Honour others by honouring these emotions.
I know statistics are people with the tears dried off, but if you refuse to dry the tears behind the numbers you will see the people, you will hear the people, but most of all, you will feel the people as if it were you behind the numbers.
Because it is only a matter of time before you and I are also numbers.
Always remember stories save lives.
Moreover, stories give life to those whose lives could not be saved and have become statistics.
How about we do something differently? To remember those that did not want to leave so soon and do not want to be forgotten, let us create a COVID-19 Virtual Memorial Map.
Use these FIVE simple steps to commemorate your loved ones lost or affected by COVID-19:
West African Lead, ALMA Youth Advisory Council/Zero Malaria Champion
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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