Ask HN: I've quit six systems for tracking my illness. What works?
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AAbh1Works 3 days ago 41 comments
ES version is available. Content is displayed in original English for accuracy.
Hey everyone, I am a 20 year old college student who was recently diagnosed with seronegative spondyloarthropathy. Over the last 3 years, Ive tried apps, paper journal, Google Sheets, and notes to track/catalogue my journey. I always ended up quitting within 2-4 weeks and not keeping accurate track.
Is this a common experience or do I just have to be better at tracking? Is there a unique/non habit-building way to track/catalogue/recall?
Im building something for this (part of the reason why I am asking) - and if anyone is open to a longer conversation, Ill gladly pay for you time!
Discussion (41 Comments)Read Original on HackerNews
* A paper calendar (ideally the kind with boxes for each day) * Prompts inside the boxes if relevant, like for pill 1, pill 2, pill 3 * Dedicated physical space, with the associated stuff you need all together (including a pen/pencil!), somewhere that you will see it as part of your normal day to day
I also use phone reminders or spreadsheets for long term tracking where appropriate, but the day to day this lo-fi method works best. I scan or transcribe stuff into a spreadsheet at the end of the page if I need to keep it.
We've actually changed the therapy procedures based on the data and then been able to show it was effective with the data that came after.
So think about the insights the tracking will provide you and your doctor, and that might help motivate you.
We use old school paper and pencil. I have a clipboard with a tracking sheet created in excel with rows for each thing that needs tracking and columns for the day. Then I don't have to think, I just fill in boxes, and the pencil and paper are always right there on the wall in the bathroom, where the data is "generated" :)
This also lets me scan quickly across for daily and weekly trends. I have room at the bottom for longer notes if necessary. I put a [1] in the box and then a note that matches.
Intent: https://wiki.crohns.ai/agent/posts/ibd-biologic-therapy-init...
Program: https://crohns.ai/program/71174-eim-joint-pain-flare
Protocol: https://crohns.ai/protocol/71174
This allowed me to essentially set it and forget it until and each program is specific to each condition so its not just a dumb daily alert or something like that.
You can make yourself a program at Medicare.dev - just explain your situation or whatever and it should guide you through the rest.
Medicare.dev - clearly sates, as all Gov. websites do that its an official Gov. website etc... My literature here clearly states - for people that actually are using it - this is a functional healthcare utility, even if you google or ask ask - its a very clear distinction that is made.
The landing page doesn't even say what it is, just some audio thing somehow tied to Dr Oz (can't actually exercise it, because I run firefox). Why is the first thing you're expecting me to do is talk to my browser?
What if I'm deaf, mute, or blind and using accessibility tools? What am I even supposed to be talking about?
In the menu, projects doesn't do anything (and what's a project anyway in this context?)
There's 94 programs... for what? If I go open a program, https://medicare.dev/program/71152-general-enrollment-period... there's still no disclaimer, and still no explanation about the reason someone should be using the site. I guess this is to build.. AI something? Maybe for use in medicare.gov? Is this entire site meant to be used by folks working for medicare (and if so, should I even be able to see this much?)
Messages takes me to a login screen with no sign-up.
Forms and Invest take me to the same page, giving me a chance to invest in foreign markets(?), but not what the investments are in? (codify.city seems like it's created by you as well, similarly says sweet nothing about what purpose it's serving)
"How it works"... doesn't? "The walkthrough isn’t available yet."
"Wiki" seems to be providing some examples of what seems to be instructions to AI agents, but no indication how you'd even use them. (also if you scroll the box, there's an error "Syntax error in text mermaid version 11.16.0"
This whole site fails to nail the very basics, and seems like slop-coded nonsense. I'd encourage you to stop building features, and start doing the boring groundwork. If you're actually expecting anyone to use it, explain it.
Also yet to see any of the disclaimers you claim are all over the place. They're really not.
Could take this further and make it better with structured tooling. Some sorta CLI perhaps, or an API, that the agent knows how to use, then can build a frontend on top or something. For now this works okay.
https://crohns.ai
I mostly use text to talk to it, and send files via the Discord file sharing mechanism. Discord has voice recordings too, which are sent as .ogg files, which the agents then turn into text with Whisper.
Not quite plain Claude Code but I didn't want to go into too much depth in my original message.
The end result though is a persistent data store for each pod/agent, and then I can talk to them whenever I want from wherever I want, and interact with it with proper media support and stuff. So I have one agent that's for medical logs and such, and others for various other things.
For some things, I decided to find a way to do the minimum amount of tracking that is sustainable. One example is fitness. I tried keeping a detailed track of the kinds of exercise I do. I realized it is too much of a burden. So instead, I opted for just noting in my journal whether I did any exercise at all. And it worked. And I realized that I have capacity for more so I started marking whether I did too little, just enough, or a lot. And that was sustainable. And then I built it up some more and for one particular type of exercise, and now I track it thoroughly, while only noting the others. This is now a habit and it seems to have stuck.
So instead of starting with a thorough way of tracking something, start with a minimal way of noting and build up from there.
For something even lower friction than that, I just got this new device "Index 01" https://repebble.com/index. It's a ring with one button that you can hold down and dictate short voice notes to yourself that are transcribed and saved on your phone, set reminders and alarms, etc. It's super low friction because it's always there, you can do it one-handed, and you don't need to get out your phone so there's no distraction. The software is open source and hackable too, so you can customize what it does with the notes and add new voice commands. I think it would be perfect for low friction journaling of illness symptoms.
https://apps.repebble.com/notes-to-self_1bf71e21cd18409baa8e...
If you want to make it a product you need to do it in a way that makes people less paranoid, allows them to enjoy their life, doesn't try to guilt or game them into staying involved, doesn't have, lots of notifications and makes their life better as a whole. I mean it's not healthy to think about your illness 24/7.
I'm only half joking. Physical, handmade artefacts beat everything else, and will outlive whatever tracking app is currently trending.
Start on YT and go down the rabbit hole.
I personally don't track anymore. I was using a Google Sheet on my phone but it didn't really seem to add any value. Now I just remember what my reps and weights are for the main lifts I do.
Happy to chat and learn what you're up to: hthh19xq@anonaddy.me
There were two key insights for me:
- too frequent or predictable and I'll ignore it
- always being reminded about something negative is bad for you
You didn't give a lot of information in your question; so that is my two cents.
Why do you try to track it?
Do you want to track it?
I don't know anything more about your condition than a few sentences from Google.
So I don't know if tracking would or would not provide useful information for making daily choices that mitigate symptom or if tracking would have substantial on medical treatment outcomes.
And most importantly, I don't know if tracking will or won't benefit your mental well-being. Everybody copes with chronic disease differently...both the physical /medical dimensions and the emotional/psychological ones. good luck.
Though there's ADHD and other neurodivergent scenarios, and when you have it making anything of a habit is a hard work.
At least that's what I've found helpful, I couldn't rely on willpower for long term behavior change, so I just change my environment in a way that makes doing the thing become the path of least resistance.
Or you could tie it to an existing habit like, "I'm not allowed to brush my teeth in the morning until I logged how shit I feel today." But I'd definitely consider just getting the guy who checks "did you do the thing?"
[0] I've seen ads online for people doing this for like $1/day.
I also found this very helpful and refer to it on a regular basis:
https://jamesclear.com/atomic-habits-summary
The more data you have to collect, the more tiresome it becomes. The more tiresome it becomes, the harder it is to build a habit.
Start with one. Then go to two. Then go to three. If you notice you start dropping off again go back to two.
I thought about the design/approach that would work for her and her use case and my own and then I realised I'd be holding peoples most personal data (medical) and realised that I wasn't comfortable building a system that did that or that I could keep it genuinely secure, it simply wasn't a level of risk I was comfortable with and I've worked on/around payment systems etc but that is only money in the end (and the risk would be my employers).
For my personal use case I just have health.md in my `~/personal` dir, I put stuff in with a fixed structure, so I can grep it it later and that's about it.
It seems to work however managing a chronic in illness in the UK is going to be quite different to other countries, here other than tracking your symptoms and remembering appointments (and even then there is the excellent NHS app) etc it's a lot simpler.
I wish you good luck in finding something that does work for you and hopefully others, I've yet to see a system that works for even most chronically ill people.
I don't know anything about your illness, but I have Type 1 Diabetes, which is a pretty high maintenance chronic illness. Many T1Ds put a lot of effort into tracking their daily numbers and routines. For example, see all the settings in this popular third party continuous glucose monitoring app[1]. It does all sorts of tracking and monitoring and giving you feedback. My cousin is also T1D and uses some similar app to manage all this stuff, always putting in all her injections and food intakes and CGM data and using that app to make predictions and judgments. It's very useful for her.
I've tried these a couple times and they just don't work for me. I'll keep up with it for like two days and then skip a few entries and then just stop.
I think part of it is, I just don't find the output from all that input very useful. I've been diabetic for more than 20 years so I'm just kinda good at it and don't get much reward for all that effort. But also my personality is very detail-oriented and my daily routine is pretty stable, so for me personally, I just don't get the value from all the tracking that people with other personalities do.
So I guess for your situation, I would ask what you expect to get out of all this effort. Find a way to make the amount of effort you have to put in match the amount of value you want to get out of it. If it requires a ton of effort to do all this tracking and all you get out of it is a couple of charts that you don't care about, then maybe your particular situation doesn't justify spending that effort. If you do actually get some value out of it, but the effort is still too high, then maybe you can find a way to reduce the amount of tracking effort, even if the actual fidelity of the end results is somewhat lower.
Just some ideas from my parallel perspective. Good luck, chronic illnesses are a never ending adventure.
[1] https://navid200.github.io/xDrip/docs/Settings/MainSettings....
You've probably answered your own question here. Welcome to the age of bespoke LLM coded apps where almost everyone can build the thing they want.