Document Your Own Experience

There are so many different ways complex chronic illnesses can appear — overnight or with a slow onset. Keep a diary of what is happening. You are your own research, and while you don’t want to obsess about it, take note of how you feel on any given day, when a new symptom arises, if it gets worse — and importantly, if it gets better. You can write it in a notebook, or keep it in notes on your phone. It will help you tell your story to medical professionals.

Look for symptoms — new, changing, etc.

Track your functioning — were you able to go school? Did you have to go late? Leave early? Were you dizzy sitting in your chair? Had a hard time going up the stairs? Whatever. Write it down.

Track other key health indicators:

For women, that would mean tracking your period. See if there is any relationship between your menstrual cycle and your symptoms.

Maybe note if the weather is having an impact on your symptoms (excessive heat, humidity, cold, etc. can trigger symptoms for some people).

What effect might food have? Did that coffee drink make you feel better or worse? Or did that carton of ice cream make you crash afterward?

How are you sleeping? Are you falling asleep easily?

How does exercise make you feel?

What about big sensory experiences? Was going to the movie theater to see the new 3-D action movie fun or overwhelming?

If you get dizzy or feel your heart racing, try to take you own pulse, or next time you are at Grandpa’s house, borrow his blood pressure cuff and take a reading or two.

Don’t forget to look notice how your symptoms may fluctuate — they can get worse, but they CAN ALSO GET BETTER!

Being able to describe your own experience can be a huge help when you visit a doctor.

If you can — get a period tracking app. Otherwise use a notebook. It’s a big investment, but something like the “Oura” ring is also helpful for giving you information about your heart rate and sleep cycles.