The Emotional Cost of Advocacy

Advocacy often begins from a deeply personal place.

For many of us, it grows out of our pain, our search for answers, and our desire to make things better for the people who come after us. I didn’t start advocating because I set out to—it was an organic process that unfolded as I began to feel more empowered as a patient. Blogging was a natural entry point for me, allowing me to describe life with migraine, explore the challenges of mental health, and create a safe space for others on a similar journey.

In an effort to feel less isolated, blogging became a pathway to community. It connected me with others living with migraine and chronic illness and reminded me that I wasn’t alone. And naturally, I felt a responsibility to offer that same sense of connection to anyone who found their way to my words. Through my lived experience, I grew into my role as an advocate and became a voice for others.

This is where advocacy began to expand for me.

The public side of advocacy

There’s a side of advocacy that is powerful, visible, and deeply meaningful—the part people often see, and the part that keeps me coming back. At its core, advocacy is powerful work, not just in theory, but in the everyday moments where real connection happens.

I’ve had the privilege of speaking on stages, sharing my story in rooms I once never imagined I’d be in. I’ve written posts that reached people in their most vulnerable moments. I’ve had conversations—through interviews, panels, and quiet messages—that reminded someone they weren’t alone in their pain.

There is nothing small about helping someone feel seen. Especially in a condition like migraine, where so many of us have been dismissed, misunderstood, or overlooked.

As a Black woman in this space, that visibility carries even more weight. For so long, many of us haven’t seen ourselves reflected in these conversations at all. This is why I continue to show up. Advocacy can shift narratives, open doors, and remind people that their experiences are valid—even when the system hasn’t caught up yet.

But what’s often left out of this picture… is what it takes to keep showing up this way.

What people don’t always see is what exists beneath the visibility. Advocacy has allowed me to turn my pain into purpose—bringing me into rooms I never expected to be in. And in those moments, I’ve seen firsthand how powerful sharing lived experiences can be.

The invisible emotional labor

But what’s often overlooked is the effort it takes to consistently show up this way.

What’s missing from the conversation around advocacy is the emotional labor behind it. For every moment of visibility, there are parts of this work that remain unseen.

The burnout from being tokenized sits heavy on me. At times, I’ve come to understand that my inclusion wasn’t based on the depth of my experience, but on what my presence symbolized—a seat at the table, but not always a voice that was fully heard.

In some spaces, diversity feels like something to be displayed rather than deeply engaged with—where being seen becomes more important than being understood. While efforts have been made to be more inclusive and representative, it can still feel surface-level. Representation without depth is not inclusion—it’s performance.

And then there’s the exhaustion that doesn’t always have a name.

The kind that comes from constantly translating your experience so others can understand it. From showing up with vulnerability, over and over again, in spaces that don’t always hold it with care. From educating while still suffering, carrying the weight of speaking for others, and navigating spaces that weren’t built with you in mind.

Feeling unseen

And just as heavy—though less often talked about—is what it feels like to watch others improve while I remain intractable.

It’s hard to be part of conversations about progress, new treatments, and hope, while living in a body that hasn’t responded the same way. There’s a quiet grief in that—one that exists alongside the work, even as I continue to advocate for change.

Despite the work I contribute toward moving things forward, there are still moments when I feel unseen. Especially as someone living with complex migraine—an experience that doesn’t always fit neatly into the narratives most often centered.

There are times when voices like mine are included to support a narrative of diversity, equity, and inclusion—but not always to challenge, reshape, or deepen it. And surface-level inclusion, no matter how well-intentioned, still leaves gaps.

This is the emotional cost of advocacy.

The tension of being visible but not fully seen.

Of being included but not always considered.

Of sharing so much of your story while still carrying your own unmet needs.

And over time, I’ve had to ask myself what it means to continue this work without losing myself in it.

Advocates also need care

One of the most overlooked parts of advocacy—especially in chronic illness—is that we are often doing this work while still actively unwell.

I’ve advocated during flare days. Written posts through brain fog. Shown up to speak while managing pain that no one in the room could see. I’m not sharing a story from the other side of this—I’m sharing it while I’m still living it.

There’s a constant balancing act between helping others and protecting my own health. Between showing up and knowing when I need to step back. Between being a resource and being a person who still needs care.

And that balance isn’t always visible to the people benefiting from the work.

Sometimes, the very thing that gives my pain purpose is also the thing that drains me the most.

Over time, I’ve learned that rest is not a luxury in this work—it’s necessary. Especially when your body is already asking so much of you.

I’ve had to come to terms with the fact that I cannot hold everyone’s pain, no matter how deeply I care. Caring doesn’t have to mean carrying everything.

Stepping back is not failure—it’s listening. To my body. To my limits. To what I need in order to keep going.

Because sustainability matters in advocacy. Not just the impact we make—but whether we can continue to exist, to show up, and to live alongside the work.

Advocacy can be emotionally expensive, but it is also deeply meaningful. When we share our stories and support one another, we create community—and that community can be powerful.

Advocacy has given my pain purpose—but it has also taught me the importance of protecting my peace.

And both of those things can exist at the same time.

The work matters.

And so do I.