Claim Your Long COVID Story. Here is Mine.

A Reflection on Voice, Illness, and Power

“Claim Your Long COVID Story” Long Covid, MD Podcast, Episode 63

Thanksgiving centers the stories we tell—about our history, our families, our traditions—and a lot depends on who exactly is telling the story. People living with illness or disability may find that the stories others tell about us may not match our truth; their stories don’t capture what we carry, navigate, or survive. Like the fable of Thanksgiving itself, there is a difference between the reality and the re-telling.

Stories are powerful, even if they are inaccurate. That’s why it’s so important to tell your own.

But how? How do we claim our story?

Earlier this year, I recorded a conversation with Dr Jean Storm that pushed me to articulate my long COVID story more clearly than I ever had before. I’m sharing it again now, because the idea of claiming your story feels especially fitting for this time of year.

Story-Telling is Self-Advocacy

The late disability activist Alice Wong taught that telling your own story is an act of power. Not because it wraps things in a neat ending, but because it insists that your life has value in the middle of uncertainty. She reminded us that visibility itself is a form of care—for ourselves and for the people who will one day hear their own reflection in our words.

So I’ve been thinking about what it means to cultivate honest stories around my illness.

I’m asking:

• What have I been through?

• What have I learned?

• How have I persevered when my life changed without warning?

I want to invite you to think about your own story in the same way.

Whether you’re navigating illness, caregiving, or simply the version of life you didn’t expect—your story isn’t a detour. It’s a narrative arc, and a journey that requires courage.

As you listen to the episode, consider:

• What chapter are you in right now?

• Where did the shift happen?

• Navigating illness is hard emotional work. What strengths are using to manage or survive? What new strengths have you developed?

Your story matters.
Your voice matters.
And your journey—messy, nonlinear, unfinished—is worthy of being told.

I’m sharing mine. I invite to reflect on yours, and ultimately share it—with a friend, a loved one, or me. My email is longcovidmd@gmail.com.

Take good care,

Zeest