My FH Diagnosis: 7 Years Later

When I was diagnosed with familial hypercholesterolemia (FH) at 29, it felt like a puzzle piece finally clicked into place. I’d lived my whole life with high cholesterol, but I never knew why. Learning I had FH was both a relief—it had a name—and a reality check: this was serious but treatable. I started with statins, then added ezetibime, and now a PCSK9 inhibitor. You can read all about my medication journey here.

Having a chronic illness is relatively new to me, and what I didn’t realize was that it would permeate all health conversations moving forward. I was at the dentist and they noticed my mouth was dry. That can be a side effect of statins. (In my case, it was just due to a mild cold, but I didn’t know that at the time!)

I had pretty severe muscle pain in my neck, which I thought was just soreness after an adult gymnastics class. (I’m not as young as I once was!) But after the pain lingered for weeks, I realized it was actually a side effect of one of my medications.

I had a strange health episode where I passed out in the shower. We now think it was caused by a vasovagal nerve syncope, but we had to rule out a heart event. I had to take multiple trips to the cardiologist for tests to be sure.

None of these things are a truly significant problem, but I don’t think I realized how often I’d be wondering, “Is this because of FH?”

Talking to my therapist helped me reframe my thinking. Chronic illnesses demand vigilance, but they don’t have to consume your life. I learned to embrace my role as my own health advocate. Now, I use my patient portal to ask my cardiologist questions rather than waiting months for an appointment. I keep detailed notes on my health history, medications, and supplements, and I’m not afraid to ask about interactions or concerns.

Most importantly, I’ve built a team of doctors I trust. That trust has freed me from late-night Google rabbit holes and brought me peace of mind.

If you’ve been diagnosed with a chronic illness, how do you manage the stress? How do you stay proactive without letting it take over your life? Let’s start the conversation.