part 3: how to help loved ones understand your invisible illness— questions to build connection and support
Living with an invisible illness can feel lonely, not just because of the symptoms, but because the people around you often cannot see the extra weight you carry. It can be frustrating to expect someone to fully understand your experience. Think of it like trying to experience a dream that isn’t yours. You can listen to someone describe it, but you cannot step completely into their emotions or fully grasp their experience.
The people who care about you may want to support you, but they cannot step entirely into your reality. The goal is not to make them fully understand or to prove your symptoms, though it is natural to want to do that, especially if you have had to prove them to the world many times. Instead, the goal is to invite them into your experience and open the door to empathy, curiosity, and connection.
Simple conversations, thoughtful questions, and shared moments can help your loved ones see a little closer to what your days are really like. Here are some ways to start those conversations.
👁 Invite Them to See Your Experience
Instead of explaining everything at once, ask questions that encourage curiosity and reflection:
I’m curious—how do you imagine a flare or bad day might feel with my condition?
What thoughts or feelings come up for you when I share what living with my condition is like?
What do you notice about how I manage my energy?
What do you wonder about living with an invisible illness?
Have you ever gone through something that really wore you down, but no one else could see it? What was that like for you?
If you had to describe an invisible struggle, how do you think you’d explain it to someone else?
🤝 Invite Support
Support doesn’t always have to be reading off a list of instructions. Sometimes it’s just a conversation about what matters most in the moment. You can still provide guidance as needed. You might ask questions like:
Are there times when just listening or being present would be enough?
What do you think the week will look like for both of us, and which days or activities might need extra pacing or rest? How can we support that?
What do you think would be most helpful?
What small gestures or actions would make a big difference right now?
What kind of check-ins or conversations would feel meaningful to you?
🚦 Invite Respect for Boundaries
Boundaries are key when living with an invisible illness, but they can be hard for others to navigate. First and foremost, “No” is a complete sentence—you don’t need to justify it. At the same time, you may want to invite dialogue that helps everyone feel connected and respected. Consider questions like:
What’s a way we can talk about changes in plans so you feel informed and I feel supported?
What does honoring boundaries look like to you?
How can we stay connected while respecting boundaries?
What are ways we can plan ahead so things still work even if they need to change?” (for example, having a backup plan for a flare day)
📚 Invite Learning Together
You don’t need to be an expert right away, and we can’t expect our loved ones to be either. We all learn in different ways—some people like blogs, some like podcasts, some read scientific articles, and some like all of it (extra nerdy, like me). Understanding a chronic or invisible condition can be something you explore together.
Is there a way I can share my experience that would make sense to you? What would help you understand more about what I’m going through?
Are there resources we could look at together so you can see what it’s really like?
Is there a way we could explore this together that doesn’t feel like homework?
When you try to imagine my day-to-day, what questions come up? Explore resources based on the resulting questions.
What’s a fun or creative way you think we could understand what it’s like?
💬 Invite Connection in Meaningful Ways
Connection isn’t about what you can or can’t do—it’s about being present. Sometimes that means slowing down, and sometimes it means finding simple, creative, or fun ways to connect. You might ask:
What kinds of interactions feel meaningful to you even when I have low energy or I’m in a flare?
How can we spend time together in a way that works for both of us?
What’s something fun we could do together that doesn’t take a lot of energy?
What low-key activities do we both enjoy that could be our easy go-tos?
What small routines could we create that help us build consistent connections?
What’s a tiny, silly ritual we could do to make a flare day brighter?
You don’t have to teach your loved ones or make them fully understand your experience. Your role is simply to open the door, share your perspective, and invite curiosity. Over time, small conversations and shared moments help them see a little more clearly what your days are like. Connection grows in those gentle openings, one moment at a time.