Navigating an Untreated Season

Living with familial hypercholesterolemia (FH) has always been a journey of highs and lows, but I am currently in a season of being unmedicated, and it feels particularly raw.

FH isn’t just a label; it’s a genetic condition that means my cholesterol levels are dangerously high by default. It’s a silent force, and the weight of it never really goes away.

Lately, as I navigate being unmedicated, I find myself caught between hope for finding the right treatment and the anxiety of knowing what might be happening inside my body.

For years, medications have been a shield

When you have FH, you don’t get the luxury of forgetting about your health, not even for a day. Cholesterol isn’t just a number on a blood test for me — it’s a constant presence, one that I know could quietly be at work in my arteries, narrowing pathways and increasing risks. For years, medications have been a kind of shield. They haven’t made me immune to the risks, but they’ve been a line of defense, something tangible I could hold onto.

Now, without that safety net, I feel exposed. The uncertainty of whether or not I am "safe" is exhausting, and it plays tricks on my mind.

The hardest part is not knowing

The hardest part of being unmedicated is the "not knowing." I can’t see inside my arteries; I don’t know what’s happening there. Is my body holding steady, or are blockages quietly building? That thought is a constant undercurrent. I try not to dwell on it, but the fear of long-term damage or a sudden event is real. Of course, there are tests that I can do, like a calcium score test, but my doctor doesn't recommend them regularly.

This season feels like walking a tightrope without a safety harness. Every choice feels significant — what I eat, how much I move, how well I manage stress. And yet, despite my best efforts, I know lifestyle alone can’t fully counteract the genetic cards I’ve been dealt. FH doesn’t play fair like that.

Even in the frustration, there's hope

Right now, I’m in a waiting period, trying to find the right treatment while hopefully starting a family.

It’s not a quick process. Medications come with contraindications, side effects, and uncertainties, and finding the right balance takes time. I’ve already cycled through a few options, and each one has felt like a trial; not just for my body, but for my spirit.

But even in the frustration, there’s hope. Science and medicine have come a long way, and I know there are options out there. I remind myself that this is a season — a chapter in the story, not the whole book, with new medications being studied and developed regularly.

A delicate balance

In this vulnerable season, I’ve had to dig deep to feel grounded. Yoga has been essential for me. The physical movement helps, but it’s the mental and emotional clarity that truly anchors me. When I step onto my mat, I’m reminded to breathe through discomfort, to stay present even when the mind wants to run to worst-case scenarios.

I also lean into other tools — breath work, journaling, and leaning on a support network. It’s a delicate balance of acknowledging my fears without letting them take over. FH has taught me that while I can’t control everything, I can still control how I respond.

Reminders about fragility and resilience

Even in the midst of this uncertainty, I’ve found gratitude. FH has forced me to be deeply connected to my body and its needs. It’s given me a purpose as a health and wellness professional, helping others find balance in their own journeys.

This condition reminds me daily of the fragility and resilience of life. While I wouldn’t have chosen FH, I can’t deny the clarity and focus it’s brought into my life. It’s a teacher in the most unexpected ways, nudging me to prioritize what matters most.

Moving forward 1 day at a time

As I navigate this season, I try to hold onto the belief that this is temporary. The right medication, the right treatment plan, is out there; it’s just a matter of time and persistence. Until then, I’m doing everything I can to protect my heart and my spirit.

Living with FH isn’t easy, and being unmedicated adds an extra layer of challenge, but it’s also a reminder of my strength. Each day I stay committed to my health is a victory. Each moment of fear that I move through with grace and trust is a step forward.

For anyone else walking a similar path, I see you. This journey is hard, and it’s scary, but you’re not alone! Together, we can keep moving forward — 1 breath, 1 choice, 1 day at a time.

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