Looking for My People

For the past decade, I’ve watched my dad quietly bear the weight of his diagnosis.

He rarely talks about what he’s going through. He shows up, keeps moving forward, and handles life the way he always has—with a quiet strength I’ve always admired. But as I’ve gotten older, I’ve realized that carrying something in silence doesn’t make it easier.

Maybe we stay quiet because we don’t know what to say when others are struggling. I know I often don’t. I don’t always have advice or words of encouragement, but I will always listen.

Now, I’m walking a similar path as my dad.

I never imagined I’d be diagnosed with an incurable neurodegenerative condition before turning 50. Yet here I am, trying to make sense of a reality I never expected.

In some ways, the diagnosis brought answers. Symptoms, struggles, and frustrations from the past few years suddenly make sense. Things I couldn’t explain finally have a name. There was relief in that clarity, but it was quickly eclipsed by something else:

Loneliness.

Not because I lack love or support. My family and friends have been incredibly caring. And yes, I know I can always talk to my dad about it. He understands this disease in a way few people ever could.

But the truth is, our experiences are not the same.

I was diagnosed at a much younger age than he was, and I’m navigating this as a woman. Those differences shape so much of what this journey looks and feels like. The questions I have, the fears I carry, and the life stages this diagnosis intersects with are different from what my dad faced. As much as I value his perspective, there are parts of this experience that still feel uniquely mine.

I wish I could find just one person my age who gets it.

Someone who knows what it means to hear words like “incurable” and “progressive.” Someone who understands the fear, uncertainty, grief, and endless questions that follow. Someone who has looked toward the future and suddenly seen it through an entirely different lens.

One of the hardest parts of this diagnosis isn’t what I’m experiencing myself—it’s worrying about the people I love most.

I think often about my husband and children and the fears they may carry quietly as our family faces an uncertain future. I worry about how this journey affects them now and the changes that may come as my condition progresses.

As a wife and mother, I’ve always wanted to protect them and be the one they can rely on. Accepting that there are things I cannot shield them from is incredibly difficult. At times, that reality feels heavier than the diagnosis itself.

I know we love one another, and I know we will face whatever comes together. Still, I grieve not only for myself, but for them—for the uncertainty they didn’t choose and the adjustments they may one day have to make.

This diagnosis has shown me that illness touches an entire family. Each of us carries our own fears, sadness, and hopes for the future.

The truth is, we’re all carrying something.

Divorce.

Death.

Cancer.

Disease.

Financial struggles.

Family heartbreak.

Loss.

Life has a way of placing unexpected burdens on all of us.

And yet, so many of us carry them quietly.

Maybe we don’t want to burden others.

Maybe we’re trying to be strong.

Maybe we’re afraid we won’t be understood.

Or maybe we’ve convinced ourselves no one cares.

Whatever the reason, many of us move through our hardest seasons feeling isolated, even when we’re surrounded by people.

That’s where I am today.

This diagnosis brings a heaviness—a grief for what might have been, a fear of what lies ahead, and a loneliness that settles in during the quiet moments.

But writing this is my way of reaching beyond it.

Because if there’s one thing I’ve learned, it’s that none of us are as alone as we think.

What gives me strength is knowing we don’t have to carry these feelings alone. We can talk openly, support one another, and make room for both fear and love.

I don’t know what the future holds, but I do know that my greatest hope is for my husband and children to always feel supported, loved, and surrounded by people who will help carry the burden when life becomes difficult.

And maybe that’s why I’m sharing this.

Not because I have answers. Not because I know exactly what comes next.

But because somewhere out there may be another woman, another daughter, another wife, another parent, quietly carrying the weight of a diagnosis and wondering if anyone else understands.

If that’s you, I want you to know this:

I see you.

You’re not the only one carrying something heavy.

And maybe, just maybe, by sharing our stories, we can help each other carry the weight.