Leading While Living With a Rare Disease
On Rare Disease Month, February, let’s not talk only about diseases.
Leading While Living With a Rare Disease
During Rare Disease Month in February, let’s not talk only about diseases.
Let’s talk about lives. Careers. Decisions. And the way many of us choose to show up professionally—every single day.
I am a woman in leadership. I work in demanding, high-pressure environments where results matter, decisions move fast, and credibility is earned—not given. My professional life is built on responsibility, accountability, and delivery.
On paper, my role looks like that of any other leader.
What most people don’t see is that I lead while living with Fabry disease.
Fabry disease doesn’t come with visible markers. There’s no sign explaining the pain, fatigue, organ involvement, or the hours spent in medical appointments that take place far from boardrooms and meetings. It’s a rare, genetic condition—one that affects every system of the body and requires lifelong treatment.
And yet, I show up.
Professional First. Diagnosis Second.
Fabry disease is chronic, progressive, and largely invisible. There’s no outward signal to explain the pain, fatigue, organ involvement, or ongoing treatment required to manage it.
I don’t ask for reduced expectations. I don’t want special treatment. I hold myself to the same standards as anyone else in leadership—sometimes higher—because I know there is often less room for error when you don’t fit the traditional mold.
To me, professionalism is not defined by physical perfection. It’s defined by consistency, responsibility, and delivery.
What I do ask for is realism: leadership doesn’t look one way, and strength doesn’t mean being unaffected.
Here’s the truth: I didn’t build my career despite Fabry disease. I built it while living with it.
That distinction matters. And that’s not a motivational phrase—it’s a fact.
Invisible Does Not Mean Inactive
There are days when pain is present before the day even starts. Days when energy must be managed carefully. Days when treatment schedules and recovery periods exist quietly alongside meetings, deadlines, and decisions.
None of this diminishes my competence.
In fact, living with a rare disease strengthens many of the skills leadership requires:
- Discipline
- Strategic planning
- Risk assessment
- Resilience under uncertainty
- Emotional control under pressure
- The ability to function when conditions aren’t ideal
These are not weaknesses. They are leadership muscles—capacity built over time.
Why I Don’t Hide It Anymore
For a long time, I believed professionalism meant silence. Don’t disclose. Don’t explain. Don’t let anyone see what’s happening behind the scenes.
But silence doesn’t create respect—it creates misunderstanding.
Speaking openly about living with Fabry disease as a professional isn’t about sympathy. It’s about visibility. It’s about challenging the false narrative that chronic illness and high performance cannot coexist.
They can.
I am proof.
Redefining Strength in Leadership
Strength is not pretending nothing is happening.
Strength is leading anyway.
Strength is showing up prepared, clear-headed, and accountable—even when your body is negotiating behind the scenes. It’s managing realities others never see.
Strength is knowing when to push and when to protect your long-term capacity so you can keep leading tomorrow.
To Other Women Living This Reality
You are not unprofessional because your body requires care.
You are not weak because your condition is rare.
You are not less capable because your path is more complex.
You belong in professional spaces—not as an exception, but as part of what leadership truly looks like today.
The Truth
My disease is part of my story.
It is not my identity.
I choose how I live.
I choose how I lead.
I deliver.
I build.
And I choose to keep building—professionally and personally—while living with Fabry disease.
