"How are you?" is a loaded question when you're chronically ill. The social script expects a cheerful "great, and you?"—but that's usually a fib or a mask. Well-meaning friends and family might press further with "but how are you, really?" They genuinely care, but they're often unprepared for our reality: chronic illness is unpredictable, messy, and well, chronic.
Initially, it feels wonderful when someone asks for the real answer instead of accepting your polite deflection. You open up about your struggles, they listen with concern, and for a moment you feel truly seen. But then something shifts. The next time you're honest about a bad day, you notice their discomfort. Or perhaps you're having a rare good day, and suddenly they act like you're "all better now."
Then comes the advice. "Have you tried drinking more water?" "What about yoga?" "My cousin's friend got better doing this one thing..." Yes, Linda, I tried yoga—surprisingly, it didn't cure my environmentally triggered issues. Why all this advice? Do they think they know more than my doctors? Do they assume I haven't already tried these obvious approaches (and most of the non-obvious ones too)?
I think a lot of the advice stems from a desperate need to fix us. Not nearly enough people in the world have learned to just sit with uncomfortable realities and feelings. They can't accept that there might not be a solution, so they throw suggestions at us like we're puzzles to solve. When they glimpse tiny improvements, they grasp at them as proof we're "recovering," which can leave us feeling guilty about setbacks or not progressing fast enough for their comfort.
Here are a few tips that helped me navigate well-meaning friends and family:
Find your own shorthand for describing how you're doing at a high level. I often say "I'm having a flare-up" or "it's a low-energy week"—it communicates clearly without inviting twenty follow-up questions.
Don't announce every upcoming appointment if follow-up questions drain you. Give yourself time to process news, good or bad, before sharing with others.
Be clear about how your loved ones can best support you. People who care about you don't intend to cause added stress. Ask for what you need and gently remind them when necessary.
If you have a loved one with chronic illness, ask what they need. "How can I best support you?" or "What do you need right now?" And please—ask before offering advice.
Living with chronic illness means that most people will never fully understand your experience. But you're not responsible for making them comfortable with your reality. Your job is to care for yourself, set boundaries that protect your energy, and find people who can sit with you in the mess without trying to clean it up.
More from Angela
 | A guest post by
|