Chronic Illness, Writing

Lesson 5: Experiment

I’ve looked for answers to my mystery illness in doctor’s offices, in books, and—big surprise here—on the internet.

Sometimes I discover something helpful, but most of the time I’m left with more questions than answers.

The most helpful approach has been trial and error, or a much looser and less rigorous version of the scientific method.

It wasn’t easy to take on the role of being my own doctor and medical researcher. I don’t like uncertainty, and when it comes to my own health, I want to know that what I’m doing has plenty of research to back it up.

The problem? There isn’t much research on my illness. My doctors can’t even agree on what label to give me.

So, I do it myself.

Sample size = 1.


It won’t tell me what works for other people, but it might tell me what works for me.

I don’t start from nothing. I do my research, and I choose low-risk treatments. I check with my doctors when I change anything major, and I keep a log of my symptoms and medications.

I’ve discovered a handful of things that help a few of my symptoms, and many more things—a cabinet-full, to be exact—that don’t work at all or make me feel worse.

When I’m trying something new, there’s always the risk of feeling worse. If you go down the path of experimentation, you have to accept that and push through your fear of feeling temporarily crappy.

Experimentation takes time. Patience is not one of my more prominent virtues, but it’s necessary when I’m trying to separate the signal from the noise.

It takes also takes careful observation and a degree of detachment. It’s easy to fall into the trap of seeing only what I want to see. I tend to get excited when I find something new that might help, but after experiment number 27, I’m able to separate myself a little more from the outcome.

I’m fortunate that I have the opportunity—the time, money, and support—to experiment. I try not to take that for granted.

The fun part?

Being my own scientist is interesting. I’ve always been a non-scientist science geek, so it satisfies some urge I have to discover new things.

I’m not the only geek out there experimenting and collecting data on myself. There’s a whole movement around it called the Quantified Self, and loads of gadgets to go with it.

I may not have everything perfectly organized in a spreadsheet, and I may not have made a big discovery yet, but that’s okay.

As Thomas Edison once said,

“I haven’t failed, I’ve just found 10,000 ways that don’t work.”

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