"The Identity Crisis No One Warned Me About After Trikafta" by Melissa Snowden

On November 4, 2021, I took my first dose of Trikafta.

I was over the moon excited. I don't think there are words that fully capture what I was feeling. The hope—that my life was about to change forever—was almost overwhelming.

For the first time, I could truly imagine a future that wasn't dictated by cystic fibrosis. I pictured myself building a wellness business that helped people with chronic illness regulate their nervous systems. I imagined travelling, speaking on stages, writing a book, hosting a podcast, and inspiring others to believe that healing was possible.

Nearly five years later, I find myself grieving the fact that very little of that vision has come to life.

My health, however, is incredible.

Aside from one hospitalization for pneumonia, I've had five years of remarkable stability. My lungs have remained strong, my BMI is normal, and I've celebrated milestones I wasn't always sure I'd reach—including turning 40. By every measurable standard, life is good.

So why do I still feel so... stuck?

I've heard many people talk about the mental health challenges that can accompany Trikafta, and while depression may describe some people's experiences, I don't think that's exactly what I'm feeling. I think it's something deeper.

Hear me out.

Most of us with CF have spent our entire lives in survival mode.

Every decision—whether we realized it or not—was filtered through the question, Will this keep me healthy? Our routines, relationships, careers, dreams, even our personalities were shaped around managing an illness.

Then along comes a medication that, for me, dramatically quiets the disease.

Suddenly, the thing that occupied so much of our mental and physical energy no longer demands quite so much attention.

And while that's an extraordinary gift, I think it can also leave us feeling strangely untethered.

It's almost funny to say that now, because physically we've never been more stable.

Emotionally?

Not so much.

Who am I without my illness?

I've had this conversation with several people in the CF community—both those taking Trikafta and those who have received transplants. Many of us seem to go through a period of grieving.

The life we've always dreamed of is suddenly more available than ever before, yet the identity we've carried our entire lives begins to dissolve. We find ourselves wondering who we're supposed to become now.

One friend said something that has stayed with me.

"It's like we're not special anymore."

At first, those words caught me off guard.

But then they made perfect sense.

For years, people worried about us. They checked in. They protected us. They treated us like delicate china dolls. While none of us would choose CF, that care became woven into our identity. In a strange way, it made us feel seen.

Now that we don't need that same level of protection, we're left asking a question we never expected:

Who am I when I'm not the sick one anymore?

Without our "sick girl" or "sick boy" identity, it can feel like we're Wilson from Cast Away (for my fellow elder Millennials)—floating away from the only shore we've ever known into a vast ocean of possibility.

We've entered a world of health where people seem to speak a different language. Opportunities appear more accessible than ever before, but somehow we don't yet know how to receive them.

For me, this has been one of the strangest seasons of my life.

Add perimenopause and reaching the end of the child-rearing years (topics for another blog!), and I often find myself looping through the questions:

What's next?

What was I made for?

If you've been feeling off-kilter since starting Trikafta—or after a transplant—I hope you know you're not alone.

We're not just learning how to live healthier bodies.

We're learning how to become entirely new versions of ourselves.

If I could offer one gentle suggestion, it would be this:

Go back to who you were before the world told you who you had to be.

Think back to kindergarten, Grade 1, maybe Grade 2.

What brought you joy before achievement, responsibility, and illness took over?

For me, it was writing, singing, and dancing.

So that's where you'll find me these days.

Not because I have it all figured out.

But because I trust that somewhere between those childhood joys and this new season of health, I'll discover the next version of Melissa.

And maybe... you'll discover the next version of yourself, too.