Mental Health and High Cholesterol

Familial hypercholesterolemia (FH) is a genetic condition that is often underdiagnosed and undertreated, leaving many individuals to navigate its challenges alone. While the physical implications of FH, such as increased risk of heart disease and stroke, are well-documented, the impact on mental health is equally significant and often overlooked. Understanding and addressing these mental health effects can be crucial for those living with FH.¹

I was diagnosed with FH in my late teens, and it took years before I understood this condition, was able to advocate for myself in the medical world, found a community, and received proper treatment. I think it’s so important to talk about FH’s effect on mental well-being.

The challenges of underdiagnosis

One of the primary challenges of FH is underdiagnosis. Despite being a common genetic disorder, affecting 1 in 250 people worldwide, many healthcare providers are unfamiliar with FH.^1,2

I have had many high-rated NYC cardiologists blank-stare at me upon mention of familial hypercholesterolemia. This lack of awareness leads to many individuals not receiving a proper diagnosis until they have already developed serious cardiovascular issues, such as heart attack or stroke. The journey to diagnosis can be frustrating and anxiety-inducing, as patients may face numerous tests and consultations without clear answers or clear plans.

Living with FH can feel isolating

Despite FH being a genetic condition, living with FH can feel isolating. It can often require significant lifestyle changes, such as dietary restrictions and regular medication, which can be difficult to manage alone and can also come with side effects.

Social events can become sources of stress, as many are centered around a meal, and explaining the condition to others who may not understand its severity can be exhausting. I’ve had so many situations where friends and colleagues have commented on me not eating the dessert, or opting for vegetables instead of fries. This feeling of being different and the constant pull to defend wellness choices can lead to loneliness and a sense of isolation.

Difficulty navigating healthcare

Even when diagnosed, many individuals with FH find that their doctors do not fully grasp the condition’s severity. I have had multiple conversations with fellow FH warriors about this frustrating reality.

The lack of understanding by medical professionals can result in inadequate support and treatment, further increasing feelings of frustration and helplessness. We often need to advocate for ourselves to receive appropriate care, adding another layer of stress. Between researching the condition, the treatment, and navigating health insurance, it can all just feel like too much. The fear of potential health complications, such as heart attacks or strokes, is also a reality, further impacting mental well-being.

Strategies for maintaining our mental health

Mental Health is the first pillar of my 4 Pillars of Sustainable Wellness (have you read my article on that yet?). Given the challenges listed above, taking care of our mental health is essential for those with FH.

Here are some strategies that help me through my journey:

Therapy

Speaking with a mental health professional provides me with a safe space to express fears, frustrations, and anxieties. I have done cognitive behavioral therapy (CBT) and acceptance and commitment therapy (ACT) to help me strengthen the skills of cognitive reframing and committed action.

Meditation

Regular meditation practice helps me reduce stress and anxiety. Mindfulness meditation, which focuses on being present in the moment, is what I start every day with. It helps me manage my stress responses and cultivate a sense of calm despite the challenges posed by FH.

Breath work

Deep breathing exercises are a simple yet effective way that I manage stress. Techniques such as diaphragmatic breathing, where you breathe deeply into your belly, can activate the body’s relaxation response. I practice breath work every morning with my meditation, and in every yoga class that I teach and take!

Support networks

My support network is my safe space. Connecting with others who have FH through online communities like TikTok, Facebook, and Instagram can alleviate feelings of isolation. I share my experiences and strategies on my podcast, Conquering Cholesterol.

A complex journey

Living with familial hypercholesterolemia is a complex journey that significantly impacts both our physical and mental health. It is so important that as FH warriors, we have tools and practices in place to help us live a fulfilling life, no matter what the diagnosis!