My name is Sarah Homewood and I'm an assistant professor
at the University of Copenhagen.
I'm going to present self-tracking to do less an autobiography of Long-covid
that informs the design of pacing technologies,
as we all know.
Wearable fitness tracking technologies are typically employed
to increase physical activity in order to improve health.
However, rather than using these devices to do more and get fitter
today, I'm going to discuss how I misused self-tracking
tools to do less during post-COVID syndrome.
I first became ill with COVID
19 at the end of October 2020, and my main symptoms
have been heart blood pressure and breathing disorders
and mental and physical fatigue and as well as cognitive problems.
I did not use any type of tracking device before I became ill.
I bought a Fitbit for months after the initial infection of COVID 19
because I suspected that I had an autonomic nervous system disorder,
and this was triggering an increase in my heart rate when I stood up.
And it was this leading to symptoms of fainting and dizziness.
And since I could not see a doctor because of the pandemic
to be properly assessed for this autonomic nervous system disorder,
I purchased a Fitbit to track my heart rate and find out, and I'm now going
to present summaries of my three or two ethnographic vignettes from my paper
about how I used my Fitbit to do less during long COVID.
So from when I purchased my Fitbit
until about six months later, when these symptoms mostly faded away,
every time I went from sitting or lying down to standing up,
I would pause, staring at my Fitbit device interface on my wrist.
The initial value would be around 60 beats per minute, and after one minute
the numbers would start to slowly increase and become faster and faster.
And as I watched these numbers rise, I felt a hot rush of blood to my head
that would result in faintness and a headache.
The final value could be anywhere from 90
to 140 beats per minute, per minute.
As you can see in these screenshots of my cardio heart tracking app,
after a few minutes of standing, the numbers would slowly start
to cascade down to a more normal 70 or 80 beats per minute.
The value at the peak of this spike in heart rate shaped
how I viewed the severity of my long COVID illness that day.
The higher the value, the sicker I would see myself.
Even though this wasn't based on validated medical information,
if I got out of bed and the peak of my heart rate spike
was 140 beats per minute, I felt like it would I would have a bad day
and I'd probably just stay in bed rather than taking a walk.
Around three months after buying my Fitbit.
I joined my friends on a weekend trip to the seaside
and this is Wales in June, and I managed to participate
in a few of the activities and spent the rest of the time in bed in the hotel.
But despite this, I pushed myself to do more than I had done before.
On the second day of my holiday, we were walking through the local village
when my wrist started to vibrate and it took me a while
to work out that the sensation was coming from my Fitbit.
Since the first time, this was the first time.
This is how this had happened.
I looked at my Fitbit and I saw there was a pixelated
animation of fireworks and birds flying lighting up the screen.
I was very confused.
One of the birds in the animation was pulling a banner
and I saw it said 10,000 steps.
I immediately felt a powerful flash of horror and started crying.
Had I really walked 10,000 steps, how could I have done this without noticing?
It was not that I was feeling tired and could feel it in my body
that I'd walk too much,
but rather it was seeing the numbers that caused a spiral of anxiety.
The joyful animations that may make this data even harder
to accept being given bad news in the form of good news highlighted
how far I was away from a normal, healthy user of a Fitbit device since I had post
exertion malaise when my symptoms worsened after physical and mental exertion.
I would typically ignore Fitbit suggested to do more
and actually congratulate myself when I stuck to under 5000 steps.
Since I've learned that walking more than this would lead to my symptoms
getting worse over the next few days and as well as limiting my steps.
I also began using my Fitbit to set my walking pace
to make sure my heart rate didn't go over 110
beats per minute for too long.
After having Long-covid for 15 months.
My symptoms began to improve
after a final test at the Long-covid clinic at the hospital.
I was told by my doctor that I needed to actually start increasing
physical activity to avoid other health problems.
This felt like a very thin tightrope to walk
between not worsening my symptoms by doing too much
and not allowing other health problems to surface because of inaction
in this final phase of long-covid.
The desire to maintain my recovery also transferred into my choice
of stationary resting activities on my cardiogram app.
If my heart rate is under 60 beats per minute, the graph turns blue.
As you can see here in this in the screenshots,
this color is not given meaning in the CardioGram app
and in this later phase of Long-covid, my stationary heart rate was actually lower
than it was during the rest of my illness and I could get more of these blue zones
during the day.
As you can see on the left, this led to me playing a game of
chasing these blue zones with the belief that they were a good sign.
Since if my heart rate was low,
then I was in a state of relaxation where my body could heal.
These screenshots show how my heart rate can vary when I'm resting.
As you can see in the white bars on the bottom here, which signify inaction.
On a good day, I'm in the blue zone
and a bad day still in the orange when resting.
None of these beliefs are founded in information given to me by my doctor,
and though they are accurate in terms of general patient guidelines
and my own experience, that exertion and a high heart rate causes relapse.
This is a very simplistic and not totally logical way
of defining a health goal for myself.
For example, I had blue phases when scrolling on social media for hours,
but knitting gave me a high heart rate over 60.
This doesn't mean that social media is more healing than knitting.
I now want to discuss some aspects that my autobiography reveal
in terms of how technologies could specifically
designed to help people with chronic illnesses pace that energy.
Pacing is a
self-management technique
for chronic illnesses that supports people in balancing energy
and rest through dividing day to day activities into chunks.
Decisions can then be made about which activities are appropriate
in the context of the individual's energy levels.
Although pacing technologies would probably have many similarities
with fitness
tracking technologies
in that they would use sensors attached to the body to collect data
and a visual interface for self-reporting data and accessing information.
My experience of having or using a Fitbit whilst having long
COVID points to a new design opening for technologies
that provide novel experiences of being ill.
One theme evident in my autobiography is how the knowledge produced by my body
was seen as less valuable than data produced by my Fitbit.
This is in spite of the fact that a Fitbit is not a medical device
and is often known to be inaccurate, as described in my first vignette.
I would use a numerical value to determine whether I was going
to have a good day or a bad day.
So I propose that pacing technology could be designed to include the bodily
experience of the user in the tracking process alongside qualitative data.
Since I might have gone on to have a bad day
from a quantitative perspective, but good day from a qualitative perspective,
another theme was how
pacing technologies could support users in decision
making to balance both mental and physical well-being.
Once we reject a normative definition of illness as something to be recovered
from rather than something to live with, I propose an alternative.
More reflective and collaborative approach can can also be reflected in the design
of these devices that engages the user in a reflective conversations
about decisions about their quality of life.
And many chronic illnesses, including long COVID, are dynamic disabilities
that are episodic.
The ill body is in a constant state of flux, and this produces
particular ways, ways of being that shape our interactions with technologies.
And I believe that designing technology for a body in a state of flux
might produce more useful and appropriate technologies for chronic illness
rather than designing with a fixed textbook definition of illness.
This might also lead to and reflecting a more positive rather than negative
perspective on illness through tracking technologies.
And I propose that studying how illnesses shape experiences with interactions
with technologies is an important and underexplored area of HCI.
Thank you.