Performing with an Invisible Disease
Executive Summary I’ve spent years ignoring the quiet signals my body sends before it shouts. That changed when I was diagnosed with Crohn’s disease. This illness taught me how to listen to my body for real and how to show up for the moments that count even when I’m running on half-power. It taught me to give myself permission to rest without guilt (or just a bit), because when you have a chronic illness, it means it isn’t going anywhere. In this edition I share my experience about being a performer with an invisible disease. It’s not about beating it, but about living alongside it. The same goes for whatever invisible health struggle you carry - migraines, anxiety, diabetes, chronic fatigue, anything that doesn’t show on the outside but changes everything on the inside. I’ve built a life where I honor my limits, tell a few trusted people the truth, and step onto the podium or into the coaching room fully present and prepared because showing up is what counts.
Dear Fellow Leaders,
Some mornings I wake up and my body feels like it’s already been through a full day before I’ve even had coffee, and I’ve learned that’s the first whisper I need to hear. I have Crohn’s, and it’s with me for life, but this could just as easily be about the migraines that steal your afternoons or the depression that makes the stage lights feel too bright or the arthritis that turns a simple gesture into a negotiation. These things are usually invisible; nobody sees the fatigue behind my eyes after a long rehearsal or the way I struggle to stay upright when my stomach hurts during a presentation. I used to think that meant I had to hide it all. Now I know the hiding wears me down faster than the disease itself.
I was 35 and invited to conduct a concert overseas. As luck would have it, I had just finished a procedure at the hospital 2 days prior to my flight. The first rehearsal was excruciating, I was exhausted from the international flight and didn’t think to ask for a day’s rest before starting my work with the orchestra. This meant that I got off the plane at 7 am and started rehearsal at 10:30 am. That’s one mistake I would never make again. The days that followed were just as hectic and soon I began to feel my body aching. The familiar tightness started in my gut, the kind that tells me a flare is coming whether I like it or not. That was the night of our premiere. I took some painkillers, got up on stage, conducted, went out to the celebratory dinner, and collapsed at the hotel. I didn’t get much sleep that night, everything was just too painful.
That was the day I started listening for real. Not just to the pain when it screams, but to the smaller signals: the extra tiredness after travel, the way stress tightens everything before the cramps even start, the quiet slump that says I need water and rest more than I need another hour of prep. Listening isn’t that dramatic; it’s just paying attention, the same way I ask musicians to pay attention to a subtle harmonic shift. When I catch it early, I can adjust. When I ignore it, it costs so much more.
I also learned that showing up doesn’t mean showing up at full strength every time. In the conducting profession, I obviously can’t change the concert date or the program if I have a flare-up, but I can do the work beforehand to make sure I give my body what it needs to be able to show up fully when the curtain rises. I used to think that was failure, that I was too weak for asking for a day’s rest after a long flight so I can come focused and healthy to the first rehearsal, but it’s just the opposite. Rest isn’t weakness; it’s the only way I get tomorrow’s good day.
Crohn’s is part of the deal now, the same way some people might deal with heart disease, high blood-pressure or vertigo. It’s not the main story, but it’s present in every chapter. I take my medicine bag on all my tours, whether I’m conducting or givigng keynotes, so it’s with me just in case. I make sure to eat healthy, get enough sleep, do my yoga practice when I can on the road, and manage my stress levels, because that’s a huge part of the deal. I’ve told about it to my agent, my colleagues, and a few trusted clients, because I believe in being 100% authentic with the people I work with.
Your body talks to you too, whether it’s Crohn’s or something else nobody can see. Listen for the whispers and show up when it counts, while respecting your own limitations. Rest when the message is clear, beacause nothing is more important than your health. Everything will wait. The disease is part of the journey, it can teach us a great deal about ourselves, if we only listen. Make it your super-power, master it and nothing will stand in your way.
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