The Invisibility of FH

On the outside, I look like a healthy, 30-something-year-old — fit, energetic, active. But on the inside, there’s a constant, invisible weight I carry. Familial hypercholesterolemia (FH) isn’t something people can see or easily understand, and that’s what makes it both isolating and deeply personal.

High cholesterol is a silent condition

FH is a silent condition. You can’t feel your cholesterol rising. There are often no obvious symptoms when plaque is forming in your arteries. It’s not like a broken bone you can point to or a rash others can see and understand. Instead, it lurks inside.

That invisibility can make FH feel lonely. I know my risks are higher than average, but I’m not in the hospital. I’m not visibly ill. And yet, every blood test, every doctor’s appointment reminds me that this condition is there, always shaping my life.

The mental health toll of FH

The hardest part of FH isn’t just the physical risks; it’s the mental load that comes with it. I constantly think about my choices — what I eat, how often I move, how I manage stress. Every meal is a calculation: Will this food nourish me, or will it add to the problem?

There’s also the constant vigilance about treatment. Are my medications working? Do I need to switch to something else? How are my arteries holding up? These questions loop in the back of my mind, even when I’m trying to focus on other things and compartmentalize.

And there’s the guilt. FH is genetic, so it’s not my fault. But sometimes, when I feel tired of managing it all, I catch myself wondering if I’m doing enough. Should I exercise more? Cut out more foods? Advocate harder for different treatment options? It’s exhausting, and it can feel like there’s no finish line.

I can't control my genes, but I can control how I live

As challenging as it is, living with FH has taught me to embrace awareness — not fear, but clarity. I’m acutely aware of my body and its needs, which pushes me to prioritize my health in ways I might not have otherwise.

For example, I’ve learned the power of small, consistent choices. It’s not about perfect discipline, but about building habits that support my long-term well-being. Maybe I can’t control my genetics, but I can control how I move through life.

Yoga has been a cornerstone in this awareness. Twisting poses, heart-openers, even the simple act of sitting in meditation remind me to stay connected. They teach me that balance isn’t about getting rid of challenges, but about learning to hold them with grace.

Living with FH has given me empathy

Perhaps the greatest gift FH has given me is a sense of purpose. As someone who works in the wellness world, I’ve turned my challenges into opportunities to help others. Whether it’s guiding someone through a yoga class or offering words of encouragement to someone navigating their own health journey, I feel deeply connected to the work I do.

FH has also given me empathy. I understand what it’s like to live with something invisible, to carry a burden that others might not see. That empathy fuels me to show up for others with compassion, whether they’re dealing with a health condition or just the everyday struggles of life.

Medical advancements keep me motivated

One of the biggest lessons FH has taught me is the power of hope. Science is always advancing, and while managing FH is a lifelong commitment, there are incredible treatments and strategies available now that didn’t exist a few decades ago. Knowing this keeps me motivated to stay proactive, to keep asking questions, and to stay curious about what might work best for me.

Finding strength and joy in living intentionally

Hope isn’t just about the future, though. It’s about finding joy in the present. Despite FH, I can still move, laugh, connect, and live fully. Some days are heavier than others, but every day is an opportunity to celebrate the life I have and the strength I’ve built.

Living with FH isn’t easy, and it’s certainly not something I would have chosen, but it’s part of my story, and I’ve learned to embrace it — not as a burden, but as a teacher. FH has shown me the value of resilience, the importance of awareness, and the beauty of living intentionally.

FH may be invisible, but we are not alone

For anyone else navigating this condition, know that you’re not alone. Yes, FH is invisible, but the strength and courage it takes to live with it? That’s something that shines through, even when we can’t see it ourselves.

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