When Illness is Invisible, Let Curiosity Lead: Marisa Zeppieri (Transcript)

Read the full transcript of journalist Marisa Zeppieri’s talk titled “When Illness is Invisible, Let Curiosity Lead ät TEDxCharleston, May 28, 2025.

Listen to the audio version here:

The Sound I’ll Never Forget

MARISA ZEPPIERI: There is a sound that I will never forget. And it’s this incredible roaring of an engine and this crunching of metal and this thud when my body hit the pavement. You see, 24 years ago today, on this very date, a pickup truck that was speeding around 55 miles an hour, well, it crashed into my body when I crossed the street one night.

And as horrific as that event was, I can tell you, I discovered a silver lining through it all. And I know that that might sound weird, but that event actually answered a question I had been asking for 15 years at that point, since I was a child.

Growing Up in Paradise

But to really understand my childhood, we have to go back just a little bit to the 1980s, my absolute favorite decade ever. So picture it with me. You’ve got big hair, an aquanet, you’ve got your boombox, and Jessie’s girl is playing in the background. I’m eight years old, and my mom says, “Marisa, we are moving from New York City to a place called Paradise.” Me, Paradise, also known as Fort Lauderdale, Florida.

And it truly was paradise. There were sunshine and beaches everywhere, but sadly, even paradise had its price, because shortly after we moved there, we realized I wasn’t like the other kids around me.

You see, that Florida blazing sun, oh, it loved my friends. It kissed their skin, it left them glowing. But me? I mean, you see me, right? No. That sun wanted to punish me. And it would leave me with sores in my scalp and my mouth and these unexplainable fevers and rashes, and it would put me in bed for days.

The Search for Answers

And clearly, something wasn’t right. So from the time I was eight until I was in college, we searched for answers in countless doctors’ offices, but the problem was my symptoms were so random, and they were impossible to pin down, that the doctors would often leave me with, “Oh, it’s just sunstroke, Marisa, that rash, it’s just your allergies, and mom, she just needs to sleep more.”

And I would leave those doctors’ offices feeling so small and silenced, but inside, my body was screaming, and it was begging to be heard. But that’s the thing. When your health is dismissed over and over and over again by the people that you trust the most in your life, your family and your friends, and even your doctors, you start to feel really invisible.

So I finally just said, “Marisa, you just got to suck it up, and you need to suffer in silence, and you need to stop asking doctors what’s wrong.” And so that’s what I did, but little did I know that that answer was going to literally come crashing into me through that truck.

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The Hospital Revelation

See, when I was in the hospital recovering from absolutely catastrophic injuries, well, all the random symptoms I had growing up, man, they all wanted to come to the hospital party at one time, and they even brought a friend along with them this time in the form of a small stroke.

Suddenly, everyone was paying attention to my body, and it wasn’t my allergies, and it wasn’t sunstroke, and it wasn’t the fact that I needed to sleep more. So tube after tube of blood was taken, and within a matter of days now, I had the answer. “Marisa, you have lupus.”

“Lupus,” I said. See, I knew how dangerous the disease was, because I had just learned about it in nursing school, but in that moment, that actual moment of knowing when it feels so tangible, after you have questioned your own body for years, that moment of diagnosis, it is bittersweet, and it is a collision of devastation and relief.

Understanding Lupus

And when I look back on that moment, oh, it is so obvious, because those symptoms I had, those are classic textbook symptoms of lupus. If you’re not familiar with what lupus is, it is a potentially fatal chronic inflammatory autoimmune disease, and I know that’s a lot.

We often look fine on the outside, but inside, our body is waging war with a variety of symptoms like fever, fatigue, and rashes and small strokes, and even organ failure and death. And what doctors use to help us are things like steroids that no one likes, old chemo drugs, and a variety of IV medications that essentially shut our immune system off. Some patients even get dialysis or have an organ transplant.

And you might be familiar with singer Selena Gomez. Well, she had a kidney transplant a few years ago because of complications from the disease.

The Reality of Invisible Illness

You see, millions of men and women around the world live with lupus, and if we look at just the United States, did you know that one in three people have at least one chronic illness? Technically, that’s you or the person to your left or right.

And if we look even deeper at just autoimmune disease, it is wild that in today’s day and age, with our technology, it is still taking five or more years for someone to get accurately diagnosed. Let’s put that into perspective for a second, okay? Show me how many of you have had COVID or the flu for a few weeks, and you felt awful. Imagine being sick for five or more years. No one believes you, and you don’t even know what it’s called.

Today, when I describe lupus to people, I often say this, imagine the most ferocious guard dog that you can think of, okay? You have him in your mind. But that guard dog, he’s attacking his own house, and man, he is enthusiastic as all get out, but he is completely missing the point.

You see, my body, instead of seeing its own tissues and organs as safe, it sees them as foreign, and it wants to viciously attack.

Bottom line is, my immune system, it gets it wrong.

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The Power of Perception

And as someone that has lived with an invisible illness now for most of her life, I have given a lot of thought to perception, and how not everything we perceive is based in truth. Sometimes even we get it wrong.

Now I know, humans are creatures that love to judge just about everything. I mean, come on, that’s why The Real Housewives has been around for how many seasons now? But not all judgment is bad. I mean, our brain is literally designed and wired to make these instantaneous judgments and let us know, are we safe? Do we need to flee right now?

And our brain uses visual cues all around us to make sense of things. So if we see someone limping, or we see someone in a wheelchair, we might automatically think illness, sickness, injury, and we adjust our empathy and our expectations accordingly.

But here’s my question. What if there is no visual cue? What if someone doesn’t look sick? How do we judge then?

The Battle Cry of Invisible Illness

And let’s talk about our own judgment and our own bias, because we all do, we all have it, and be honest. When I walked out on stage today, did you think I was sick? You might be skeptical. You might be thinking, “Oh, I mean, Marisa, how bad could it be? You put on a dress, you’re doing a TED talk.”

And to that, I would say, this is why there is a battle cry among everyone living with an invisible illness, whether it is lupus, or long-haul COVID, or MS, and Lyme, and fibro, and the list goes on and on and on. Because what you see when you look at us in a split second, it tells you nothing about what we live with every single day.

In that moment, you don’t see our symptoms, and you don’t hear those vocal arrows that are hurled in our direction that often sound like, “Well, you’re sick because you still want to be sick.” Or “They’re just lazy, they don’t want to work.” And even “If you had prayed harder, you would have been healed by now.”

See, I’ve prayed really, really hard. And when we make those types of statements to and about people, they’re not just emotionally devastating. And I will tell you, they sting for years after they’re said to someone. They’re also really dangerous, because it questions someone’s reality, and their honesty, and their worth, and it isolates people, and none of us want to feel isolated.

Curiosity as the Antidote

But the good news is, there is a way past all of this judgment that is out there in this world, and it is through curiosity. See, curiosity is a powerful antidote to judgment, because it rips us out of that judgment zone, and it puts us right into someone else’s story.

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Curiosity swings open the door to connecting and understanding another human. Just if my doctors had been just a little more curious years ago, who knows, maybe I wouldn’t have suffered for 15 years. See, we don’t need you to feel our symptoms, we just want you to see us and be more curious.

So if you’re wondering, how can I do this every day, consider this. Have you ever had someone in front of you in line, and they’re moving so slow, you are about to lose your mind, and you’re looking at them, because they look fine, and it doesn’t make sense? Or have you ever gotten really mad, because someone parked in the handicap spot, and maybe you rolled down your window, and you even said something to them, because your brain was screaming, “You don’t look handicapped enough for me.”

See those everyday moments that we all get, those are really powerful invitations to kick judgment to the curb, and to get curious. Ask yourself in that moment, “I wonder what I’m not seeing about this person’s story. I wonder how hard they must struggle every single day.” And you can even ask, “I wonder how I can help.”

Taking Action Through Curiosity

Because when we get curious about people, we can start taking action. You know, after I was diagnosed, I really wanted to help people. It’s part of the reason why I went to nursing school. So I started a non-profit, and I wrote a memoir, and did a podcast, and did all of these things to raise awareness, because I wanted other lupus warriors to know, you don’t just have to barely survive every day, but you can thrive, and you can still reach your dreams.

And I have a heart for those that are in college, and probably because I never got to finish, and I know how hard it is to be so sick, and to be in college, and going through treatments, and treatments that can cost up to $50,000 a year. So through action and generous donors, we’ve been able to give away 19 college scholarships so far.

See, when we get curious about people, and we add compassion and action to that equation, and that’s the moment. That’s the moment that you can change someone’s life.

A Call for Visible Compassion

So moving forward, let curiosity be the thing that leads you every day with people. Because together, we can create a world where invisible illness is met with visible compassion, and a world where no one’s suffering has to wait years, or decades, or even has to be hit by a truck to finally be believed.

Thank you.