5 Things People Wish Their Village Understood About Chronic Illness

Living with a chronic illness isn't just about managing physical symptoms; it's about navigating a world that often doesn't see, hear, or understand the daily struggle. We often talk about the importance of a "village", the family, friends, neighbors, and community to support someone living with a long-term condition. But what if that village doesn't know how to help?

What if their attempts, while well-meaning, sometimes inadvertently make things harder?
Those with chronic illnesses have surely wished they could hand out an instruction manual. Here are five essential things people with chronic conditions wish their loved ones truly understood about what it’s like to live with an illness that never takes a day off.

1. Appearance Is Not an Accurate Indicator of Health

This is perhaps the most frustrating misconception, especially for those with "invisible illnesses." The most common comments a person with a chronic illness hears are often: "But you look so good!" or "You seem fine, are you sure you can't come?"

The truth is, an attractive appearance is often a carefully constructed mask put on for the world. A person might spend hours resting, stopping and starting just to get ready in the morning. When they need to change plans, it’s not because they decided to be unreliable, but because they have reached their body’s absolute limit. The effort to "look well" often costs energy they can’t afford to lose.

2. Pacing Is Not Optional, It’s a Necessity

Society rewards pushing through exhaustion. For people with chronic illnesses, this mindset can lead to huge setbacks. What their loved ones need to know: Pacing is how they regulate their condition. How they pace themselves today often determines the energy they will have for tomorrow.

When someone says they can only stay for a bit, they are making a conscious decision to save energy for the things that must be done—like working, caring for family, or attending a crucial appointment. This isn’t laziness; it’s a survival strategy.

3. The Illness Is Always Present, Even When They Don't Talk About It

A chronic illness is not a mere "complaint" that is brought up at times. It is a constant state of being. A significant amount of mental energy is spent tracking symptoms, managing medications, strategically planning the day around energy levels, and dealing with anxiety over the next flare-up.

People with chronic conditions wish their village understood that even in silence, they are navigating this reality. Simply asking, "How are you really doing?" and being prepared for an honest answer can be incredibly helpful.

4. They Need Empathy, Not a Cure

Every person living with a chronic illness has heard their share of unsolicited wellness advice. Suggestions like "Have you tried yoga?" or "You just need to cut out gluten" are common.

While these suggestions often come from a place of care, they can invalidate years of tests, doctor visits, and failed treatments. They subtly suggest that the person is still sick due to a failure on their part to try hard enough. The best approach is to skip the advice. Instead, offer a meal, a ride, or simply a listening ear. Offer support, not a solution.

5. Their Identity Is More Than Their Illness 

Living with chronic illness takes up considerable space in a person's life, but there is still a whole person underneath the diagnosis.

They still crave normalcy. When talking to them, it's important not to let the illness be the only topic. Ask them about the book they are reading, the show they are watching, or the funny thing their pet did. These simple gestures remind them that they are still a friend, a family member, and the person they have always been.

What Can The Village Do? 

For those who are part of the village, understanding is the first step toward true support. The best thing a loved one can do is learn to offer practical, non-judgmental support.

Instead of asking, "Let me know if you need anything" (which puts the burden on the sick person), try offering a specific, low-demand task:

• "I'm running to the store, what can I pick up for you?"
• "Can I watch a movie with you on the couch today?"
• "Can I bring over a meal today?"

Understanding is the first step toward true support. 

XO,

Katherine