Ask HN: I've quit six systems for tracking my illness. What works?
I'm a 20-year-old college student recently diagnosed with seronegative spondyloarthropathy. Over the last 3 years, I've tried apps, paper journals, Google Sheets, and notes to track my journey, but I always end up quitting within 2-4 weeks. Is this a common experience, or do I just need to be better at tracking? Is there a unique, non-habit-building way to track, catalogue, or recall? I'm building something for this, and if anyone is open to a longer conversation, I'd gladly pay for your time.
I've been tracking my chronic illness for years, and the only thing that stuck was a simple daily email to myself. I just reply to the same email thread each day with a few bullet points. It's not a habit to build, it's just part of my routine. I can search my email history easily, and it's always with me.
The problem with most tracking systems is that they require too much effort. I've found that using a physical symptom chart on my wall, where I just put a sticker on a calendar for each day I feel bad, works. It's visual, low-effort, and gives me a quick overview of patterns over time.
Instead of tracking symptoms, I track my activities and meals in a food diary app, and then correlate with how I feel. I don't track symptoms directly; I track potential triggers. This way, I'm not constantly reminded of my illness, but I still get useful data.
I use a voice memo on my phone. Every evening, I just talk for a minute about how I felt that day. It's zero friction, and I can listen back to spot patterns. I never have to type or write, and it's more natural than filling out forms.
I've found that the best approach is to not track at all, but instead to have regular check-ins with a doctor or a friend who asks me specific questions. This external accountability and the structured conversation help me reflect without the burden of maintaining a log.
I built a simple app that sends me a notification at a random time each day and asks me to rate my pain on a scale of 1-10 with one tap. It's so minimal that I don't feel like I'm 'tracking' – it's just a quick reflex. The randomness prevents it from becoming a chore.
- placidpanda
Moving into the "physical world" helped me immensely.
* 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.
- jedberg
I have to track daily data for an illness. What motivates me to stay on top of it are the insights gained from the tracking. Being able to go to the doctor and answer questions definitively instead of anecdotally.
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.
- luplex
My friend paid someone to call her every day and ask her how she's doing, then write the rating in a spreadsheet.
- arionhardison
The reason these things did not work for me is because they were things I had to "do" as in remember/initiate so I made Crohn's AI - because its a program that runs and I just have to reply or answer when the AI-GIs contact me.
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.
- nusl
I have an llm agent with a harness that stores/logs everything in a structured manner to local files and/or sqlite. This then turns more into casual conversation type stuff. Send it test results, talk about stuff, give it updates, etc, and it handles the rest. Querying the data is pretty straight-forward without the agent since it's plaintext/sqlite. I tried random tools over time but sorta fell out of them. This is kinda the only thing that's stuck.
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.