Advocacy, Grief, and the Emotional Journey

Living with familial hypercholesterolemia (FH) is a unique challenge, not just because of the physical condition itself, but because of the emotional weight it carries.

For me, FH isn’t just a diagnosis — it’s deeply tied to the loss of my mom, who passed away from a heart attack when she was just 51. That loss, and later my own diagnosis, turned me into an advocate for FH awareness. But being an advocate is a constant reminder that I live with this condition.

Some days, it feels empowering to speak up and share my story. Other days, though, it feels overwhelming. It’s a balance I’ve had to learn to navigate, especially when the emotional weight of advocacy collides with the grief I still carry.

The emotional toll of advocacy

When I first started speaking out about FH, it was from a place of wanting to help others. After my mom passed away and I was diagnosed at 18, I realized how little people — including myself — knew about this genetic condition. I felt a strong need to raise awareness and encourage others to get tested, especially those with a family history of heart disease. Being an advocate seemed like the right way to channel my grief into something positive, something that could potentially save lives.

But being an advocate also means constantly talking about FH, about the impact it has had on my life and my family. Every time I share my story, I’m reminded of the loss I’ve experienced. There are days when the weight of that reminder feels almost unbearable. I think of my mom and how different things could have been if she had been diagnosed earlier, if she had known about FH. And then, I’m faced with the reality that I’m living with the same condition that took her life.

Advocacy can be empowering, but it can also be emotionally draining. It’s not just about educating others — it’s about reliving my own pain, grief, and fear. There are days when the constant reminder that I have this condition, that it’s part of my identity, feels like too much to handle.

Leaning on loved ones

On the days when advocacy feels overwhelming, I’ve learned to lean on the people I love and trust. It’s taken time for me to get comfortable reaching out for support, but I now know that I don’t have to carry the emotional burden of FH alone. Whether it’s a close friend or a family member, having someone to talk to helps lighten the load.

When I’m feeling particularly vulnerable or emotional, just talking to someone who knows my story, who understands the weight of what I’m dealing with, can make all the difference. Sometimes, I just need to vent or cry, and other times I need someone to remind me that I’m doing important work — that even though it’s hard, it’s worth it.

Ignoring the pain only made it worse

One of the most important things I’ve done for myself is seek therapy. Living with FH and losing my mom at such a young age are heavy experiences, and talking to a therapist has given me the space to process the grief and fear that comes with both. Therapy has taught me that it’s okay to feel overwhelmed, that it’s okay to have days when I don’t want to be an advocate, when I don’t want to talk about FH. Those feelings don’t make me weak; they make me human.

I’ve also learned how important it is to acknowledge the pain when it arises. There was a time when I tried to push through it, thinking that as long as I stayed busy advocating and helping others, I wouldn’t have to face the emotional toll FH had taken on me. But, eventually, I realized that ignoring the pain only made it worse.

Now, when the grief hits, I let myself feel it. I sit with it, acknowledge it, and then I move forward. This process of allowing myself to feel the emotions, rather than running from them, has been crucial in helping me stay grounded.

Reminding myself that I'm not alone

Despite the emotional challenges, I keep going. I keep advocating for FH awareness because I know how important it is. I know that by sharing my story, I’m helping others realize that they, too, might have FH, and that they can get tested and take steps to protect their heart health. I keep going because I want to honor my mom’s memory and help prevent other families from experiencing the same loss.

Living with FH is a lifelong journey, and it’s not always easy. Advocacy is a big part of that journey for me, but it comes with emotional ups and downs. On the days when it feels like too much, I remind myself that I’m not alone. I have my loved ones, my therapist, and a growing community of people who understand what I’m going through. And at the end of the day, even when it’s hard, I know that I’m making a difference. And that’s what keeps me moving forward.

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