Being present and being there through chronic illness

There was a time when showing up meant physically being there — at the meeting, the appointment, the event, the moment. I used to equate my physical presence with my worth. If I couldn’t show up in person, I felt like I was falling short.

Chronic illness has a way of quietly reshaping the meaning of things you once took for granted. It teaches you that showing up can look wildly different from one day to the next.

When you live with a rare disease or chronic illness such as hereditary angioedema, every plan comes with an asterisk. You can say yes to something with the best of intentions, only for your body to snatch that yes away in the blink of an eye. I’ve had to cancel things I truly wanted to be there for — big things, meaningful things — simply because my body said no. The guilt that follows is heavy, especially when you’ve built your identity around being dependable.

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But somewhere along the way, I started to recognize the quiet, compassionate ways some people have shown up for me. The friend who texted, “It’s OK. Get some rest.” The friend who dropped off coffee and sat beside me in comfortable silence because even talking was too much that day. The friend who never made me feel like a burden when my illness got in the way of things. That’s when it clicked — showing up isn’t about where you are, it’s about how you love.

There’s a deep kind of grace that comes in redefining connection. The late-night message that says, “Thinking of you.” Sharing your story so someone else feels less alone. Being honest enough to say, “I can’t today,” and trusting the right people will understand. These are all moments of showing up, of being there.

In the rare disease world, those small acts ripple far beyond the monitor or screen on which they are read. When your world shrinks to the space between treatments and flare days, knowing someone “gets it” can feel like light seeping in through the cracks.

Showing up for myself

The most transformative lesson has been learning how to show up for myself. To rest without apologizing. To honor the limits my body sets. To stop treating self-care as selfish and start recognizing it as survival, a way to stay in the fight longer. On the days when I feel like I’m backtracking instead of moving forward, I remind myself that healing isn’t linear. It loops, dips, and circles back, but it still moves forward, even when the path doesn’t look like progress. Although it may not be immediately apparent, progress is still being made.

Speaking out for my community is showing up, and so is choosing rest so I can speak up tomorrow. Both matter. Both count.

If chronic illness has taught me anything, it’s that presence isn’t measured in miles or in physical moments — it’s measured in meaning. It’s in the strength it takes to send a message when you’re exhausted. The courage it takes to keep reaching for connection when isolation tries to pull you inward. The grace it takes to forgive yourself for all the times you simply couldn’t.

Our bodies may not always let us go where we want, but our hearts still find their way. Showing up is love that adapts, connection that bends without breaking, and relationships that see far beyond the limits of what’s visible.

And sometimes, presence is a text, a thought, a whisper of understanding that says, “I’m here.” Even when you can’t be.

Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.