1. We’re really good at faking well.
We’ve probably been accused of “faking” our illness or disability, but the reality for most of us is the opposite. We pretend to feel better than we really do at school, at work, and at family gatherings. Unless we’ve disclosed our symptoms to you, you might not even know we are sick.
2. We’re tired.
Pain is exhausting and distracting, both wearing us out and preventing us from getting the rest we need. Everyday tasks like meal prep and personal hygiene may sap our energy for the day long before we’ve done anything “extra”.
3. Our sleep schedule is a mess
My bedtime is ten, but I rarely make it. If I know my pain level is too high for sleep, I might avoid bed until I feel better, or concentrate on distracting myself until i am more tired than achy. Other days I’m so exhausted I fall asleep immediately after dinner and struggle to wake up the next day. The only thing I can count on is lack of predictability.
4. We have brain fog.
Pain is confusing and pain medication can impair cognition. Pain is very immediate and it can be hard to think ahead or guess how abled we will be on a future date.
5. We’re probably under-medicated.
Over-medication has obvious risks, including addiction and overdose. Concern for these risks, and cultural detest for addicts, can make it difficult or impossible for a patient to get true pain relief. Some patients will respond well to marijuana, others to narcotics. Some patients do best with access to both.
6. We totally meant to clean.
It can be hard to maintain a clean home with chronic pain. Bad days can stack up, letting chores backlog and making it harder to catch up. Pain in some parts of the body can restrict movement and make housekeeping difficult to manage. If you are a friend, we probably want to see you even when we can’t keep up. Just please forgive the mess.