Advocacy Is Not a Side Hustle, It’s a Leadership Role: Why Patient Advocates with Chronic Illness Belong in Healthcare Leadership

Sitting on the board at Mount Sinai’s Corinne Goldsmith Dickinson Center for Multiple Sclerosis has made one thing very clear to me: this is not awareness work. This is strategic influence. This is where strategy is shaped, priorities are set, and real impact is decided. Chronically ill leaders belong at the decision-making table, not as symbolic voices, but as key stakeholders.. 

What Board Leadership Actually Looks Like

When people hear “advocacy,” they often picture storytelling: speaking on panels, sharing lived experience, lending a face to a cause. That work matters, but it is not where decisions are made.

Board service is different. At Mount Sinai, my role is not to represent a story, it’s to contribute insight shaped by lived experience to influence decision-making.”

The questions I bring into the room are informed by navigating chronic illness every day, and they are applied at the level of systems, access, and impact.

From Patient Voice to Institutional Influence

Too often, chronic voices are invited in after decisions are formed, asked to react, validate, or humanize outcomes we had no role in shaping.

Board leadership flips that dynamic. It allows chronically ill leaders to:

• Influence and shape priorities before they’re finalized
• Advocate for patient-centered models at scale
• Identify gaps invisible to those without lived experience

Advocacy as Professional Leadership

My leadership doesn’t stop at the board table. Through my professional role in pharmaceutical marketing and my writing with the Chronic Boss Collective, I focus on how chronic illness intersects with work, leadership, and ambition, challenging the idea that professionalism requires concealment of personal health experiences at all costs.

That platform is not a passion project. It is thought leadership. It’s where I explore:

• How chronically ill professionals lead differently, often with distinctive strength
• Why leadership must include human vulnerability
• How organizations can integrate diverse voices into strategic influence

How Chronic Leaders Transform Leadership

Chronic illness trains leaders in ways no executive training program can:

• Navigating complexity without certainty
• Managing risk with incomplete information
• Designing systems that work on hard days, not just ideal ones

When chronically ill people sit at decision-making tables, the conversation changes. Priorities shift. Assumptions are challenged. Solutions become more durable because they’re built for real life. This is about better leadership outcomes.

The Work Ahead

I see my board service and writing as part of a larger leadership arc, one where chronic voices are no longer treated as an afterthought, but an essential piece of collaborative decision-making.  

Advocacy is not something I do on the side of my career. It is my leadership practice.

When people with chronic illness help lead, systems work better for everyone.

Questions to Ask Yourself:

• What unique perspectives do my lived experiences give me in leadership roles?
• In what ways have I influenced decisions beyond telling my story?
• How can I mentor or advocate for myself and others to gain meaningful decision-making roles?