6 Truths About What My 'Good Days' With Chronic Illness Are Actually Like

Various people in my family have been using the term “good days” to describe how I get stuff done on a given day, versus understanding what I actually felt on that day.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

1. My good days might not be considered someone else’s idea of good days.

Most of the time, good days are thought up and imagined as everything going your way for one single day. In 24 hours, you get everything done that you wanted to get done, and some more. You feel complete and at peace with the world around you, and that you’ve contributed enough time and energy to watch your goals and aspirations come full-circle. With Ehlers-Danlos syndrome, it’s difficult to come up with the energy you need to fulfill those aspirations or daily goals.

2. If I’m having a good day, you’ll know by what I say, not what I do.

Most adults mistake actions for feelings. If you woke up at 7 a.m. and made your way to work by 8:30 and didn’t call out sick, you must be having a great day. That’s not really true, because even if that amount of time at work is less than part-time once all the work days are added up, you can’t fall asleep on the job, or get a stomachache and leave.

3. Good days are spent having good times with others.

If I come back from a bad day at work, and cuddle with my dog or spend the entire evening on my phone, you’ll know it’s been a bad day. If I was feeling in good spirits, I wouldn’t want to spend all that time by myself. Even though my good days are not like your good days, that doesn’t mean I don’t want to spend my good days without family and friends by my side.

4. Bad days are not lazy days.

I don’t sleep because I want to, or because I’m depressed. I go to sleep because my fatigue is so bad, even breathing hurts.

5. You can remember the last time you had a good day.

Remembering is everything. If you’re blessed with a truly good day, never let it go. Even if it was weeks or months in the past, you might be surprised in the future by another good day, and hold on to it just like you did with your last good day.

6. Good days are not only defined by health.

My perfect combination for a good day involves health, but it also involves family and friends and being able to enjoy whatever time I get to spent with them. Good days involve the energy to walk and talk and interact for a few hours, never letting my attention leave the ones I love. That’s my idea of a good day. What’s yours?