Friday, 10 February, 2023 in Portland, Oregon and a grey, half-hearted rain of a day.
Here's how it starts: taking a look at Apple News this morning over breakfast and then skimming an article on Today about young people dying of heart attacks ever since the COVID pandemic started1.
Here's the background to what caught my attention: the opening story about Demi Washington, a basketpall player at Vanderbilt University who got COVID-19 in late 2020 and as part of her return to play, was required to have an MRI. The MRI showed Washington had developed myocarditis, an inflammation of the heart muscle2.
And here's the bit that really caught my attention, my emphasis:
Washington's doctor never told her that she was at risk of dying, but he did stress the importance of rest and keeping her heart rate under a certain pace. She had to wear a watch to track her activity. Even though COVID was especially new at the time, Washington said her doctor felt confident her condition was due to the coronavirus, as he'd seen something similar other college athletes.1
I have written a lot about activity trackers, going all the way back to my diagnosis with type 2 diabetes and going all in on figuring out whether and how a quantified self approach (measure all the things!) might help. I mean, I'm (or was) predisposed to a measure all the things approach anyway, but long-time readers will know how that's attitude changed and gotten more nuanced over time.
There's two interlinked issues I have with the current implementation of most health and fitness activity trackers, which is that they more or less have a simplistic and idealized view of health that doesn't take into account the intersection of chronic illness and mental health. Put simply, if you're not in an open and receptive frame of mind and a supportive enough environment, the tone of voice and behavior modification/nudge/gamification techniques involved in the design of these services can be as much discouraging as it can be encouraging. I mean, just yesterday I wrote about people being super annoyed that their Fitbit streaks had been reset.
The way I've talked about streaks in the past has been that if you're someone like, say, me, your approach to a streak can be somewhat all-or-nothing. It's great at the beginning for habit forming, but at some point, say after one week, or two, it starts becoming an albatross. What started out as encouragement can turn into pressure as the number grows: the larger the streak gets, the "worse" it will be if you fall off. The tightrope you're on just gets higher and higher. This... is not great. My point before has also been that in the management of a chronic illness, and my experience with type 2 diabetes, what you want is consistency, and not a streak. I keep saying that it matters more to my doctor the number of days out of a year that I exercised, not whether I did 30 in a row and then dropped off because, well, life happened because try as we might, external events out of control just keep... happening? I mean, what's up with that.
But back to the point. Washington wore a watch to track her activity, and although it isn't explicitly mentioned, the implication is that Washington wore a watch to limit her activity during a period of (perhaps long-term, perhaps worst case lifetime, convalescence.
This is not how most activity trackers are designed to work, in general, because their implied if not explicit goal is, I think, for you to develop health and fitness and attain and maintain a goal. There's even pressure to up that goal: on initial setup, Apple's fitness rings -- it's not really an app -- will work with you to set goals for movement, exercise and standing up. If you hit those goals, the software will recommend that you increase them, or keep them the same.
This is not what Washington was using her watch for, I think, and the use-case of the watch for her would've been different than the assumed default.
What I'm thinking about is whether activity trackers exist to help you keep within or under a certain energy/activity budget. Or to put another way, an activity tracker whose goal is to keep you within your spoons.
I should caveat that this isn't particularly thought through and that the intricacies and experience of long-term, chronic illness of different kinds is extremely individual and frequently inextricably linked to mental health. So please don't read this as someone crashing in as "hey, here's how you'd solve spoons for spoonies!" This is not that.
What if, or what would it be like, to take one example, to have a COVID-aware activity tracker? In that sense, it wouldn't even be an activity tracker, it'd be a convalescence app (ugh), but my point here is that you'd want it to be integrated into, e.g. Apple's watchOS fitness/rings/health suite, because otherwise the two would be in conflict. You'd have a convalescence concierge telling you to take it easy, and you'd have a health/fitness/rings app built, I think, around a default assumption of reaching some level of healthiness and maintaining that. Those defaults are shown and reinforced in the user experience of reaching a goal: yummy lickable fireworks.
But if you're trying to conserve energy, you don't want to reach that goal. You want to stay under it. Sure, you want to maybe get up and about, I guess? Take a very slow short walk outside? But you are supposed to be resting.
And I get why this doesn't exist, it's because it's difficult and nuanced and hard to design for because your individual customizations and preferences explode and sure the utilitarian view is to make available getting-healthier-technologies to as many people as possible, so best to leave out those with chronic illness for now, yeah?
I will just point over to an imaginary sign about how this appears to be at odds with any particular company's committed attitude toward accessibility, while also acknowledging that it's not like many other activity trackers have explicit support for wheelchair users and wheelchair workouts so sincerely: many props there, Apple.
Here's what I can think of, off the top of my head:
And what might be in a convalescence mode, or a rest mode? And while I'm thinking of that, there's a separate need, I think (hey! validate through research!) for, I don't know, a chronic illness mode, because convalescence and rest are different things with different qualities distinct from the requirements and needs of people with long-term chronic illnesses.
Some people who responded to my thinking-out-loud thread shared that you can use sleep tracking as a way (though I would advise against any app or service to use it as the main input!) to inform the spoons-for-the-day
Others shared that the actual content design as you near a goal or limit matters a lot, and I wholeheartedly agree. Here's Emilia:
But also, agree 1000% with your broader point that “hey, you’ve gotten more exercise than usual today, do you want to wrap up this gentle walk soon?” would be an incredible set of features.3
Okay, fine: so maybe we should consider how activity and health and fitness trackers and services can meet the needs of chronic illness and convalescence. But these days we don't just do that, we also have to consider the attack vectors and how any attempts could also be used to make life even more terrible. One of those ways is healthtech surveillance, where we're at the stage of U.S. health insurers offering incentives for "healthy activity" and discounted or free hardware with which customers can manage their fitness, all the way through to how my CPAP now is very happy to announce on its display that I have ACHIEVED COMPLIANCE, which I find sadly hilarious. My understanding is that COMPLIANCE is a technical term of art (is a patient adhering to a treatment regimen?) but of course if you're not aware of the term and how it's used in that context, then it sounds awfully POLICE STATE YOU HAVE 20 SECONDS TO COMPLY before Paul Verhoeven guns you down in the boardroom and then falls down the stairs.
So. Thinking about chronic illness mode. Convalescence mode. Rest mode. Recovery mode. I don't know, even I just did a fucking marathon mode. Or cooldown mode. But it would be amazing, refreshing and a wonderful signal to see a major player in this space do something. At the same time, I'm sad about how amazing and refreshing it would feel, given that we're over 2 years into a pandemic that will never, ever end now.
“If Elon can learn how to put a bit more thought into some of the decisions, and fire from the hip a bit less, it might do some good,” the employee said. “He needs to learn the areas where he just does not know things and let those that do know take over.”
which I would now like to be described as a platonic example of another of my new favorite phrases, the load-bearing if-statement.
I am really scratching my head over this paper theorizing that Theory of Mind May Have Spontaneously Emerged in Large Language Models5, not least of which because it's a story that a whole bunch of science fiction reading nerds want to be true.
Also still stuck in my head is the idea (somewhat related to the above, I guess) that all of this prompt reverse-engineering, like figuring out the prompts behind Bing's new chatbot, is people getting to pretend to be Dr. Susan Calvin.
Woof. Okay, that's it for today. Have a good weekend, if you're the kind of person who has a weekend, and if you're the kind of person where the weekend is the time to get done all the other shit that you have to do to just survive in today's not-even-late-stage-yet capitalism environment, well... take it sleazy, I guess.
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Young people are more likely to die of heart attacks post-COVID, study finds. But why?, Maura Hohoman, Today, 9 February 2023 ↩↩
Myocarditis and Pericarditis After mRNA COVID-19 Vaccination, CDC, September 27, 2022 ↩
Elon Musk fires a top Twitter engineer over his declining view count, Zoë Schiffer and Casey Newton, Platformer, 9 February 2023 ↩
Theory of Mind May Have Spontaneously Emerged in Large Language Models, Michal Kosinski on arxiv.org, 4 February 2023 ↩