Ask HN: I've quit six systems for tracking my illness. What works?

What do you need to track? Are you trying to track something like ten different things or just one or two?

This is the best solution. It's very easy to ignore a notification from some app and not so easy to ignore a call from somebody you know by name who is trying to help you.

I keep an old phone in the bathroom, and every morning I use it to file my weight and my peak flow (for asthma tracking) on a web page I host on my home server. The server just appends the numbers into two text files, and plots some nice curves. In case of errors or other problems, I can just go and edit those files. The basic tracker took about an afternoon to code, by hand, long before we had LLMs. I have a more advanced tracker system to remember all the craft beers I drink, that one has recently migrated to a sqlite backend, and the LLMs have helped me to add many more features. Some of my friends have wanted to use it too, one lasted a couple of months, the rest gave up within a week - it requires discipline which most people don't have - I wouldn't either, but being my own system I am more inclined to keep using it, and adding features.

My advice would be to find a way that minimizes the friction, and get it into your (morning?) routine. And keep the system simple to begin with.

I use this ai tool that checks in over sms every day, and is more conversational.

https://www.atlasnetwork.org/

Those are good questions, and to answer them you really have to think about what it is to have an illness that requires treatment.

Typically you start on a medication. These usually take anywhere from 3 to 6 months to really work. Along the way you will have ups and downs, and maybe some unexpected new things happening that are related to the disease. Do you feel better today than 3, 4, 5 months ago? Are you having more sick days, fewer sick days? Are you having more or fewer days with nausea or headaches?

After being on a medication for some time, you might have a general feeling about whether it's good or not. But for people like OP, it's very often not the case that you start on a medication and everything is good. No: you go through one medication after another. Sometimes multiple stacked on top of each other. Each medication takes months to kick in.

Who remembers if medication 1 worked better than medication 5, four years later? It's surprisingly hard to remember how you felt physically. It's also really important to keep a journal of the basic facts, like what doctors you saw and what tests were done. But I think tracking how you feel is important. It allows you to compare (not scientifically or perfectly, but well enough) over time. It allows you to see trends you might not spot otherwise; a medication starting to fail as opposed to random flares, for example. Or if you track what you eat, you might notice that some types of foods make you feel bad for a couple of days after, a connection that's often hard to make without doing a full elimination diet.

I recommend people with chronic illnesses keep a spreadsheet of how you feel, day to day. But also track every medication, every switch, every diet change (if applicable), every doctor's visit and treatment decision, every symptom and side effect. I don't think anyone should obsess about it, but recording some basic facts doesn't hurt and doesn't take much time, as long as can remember to keep it up.