Although cardiomyopathy might sound like a shorthand synonym for cardiovascular disease, there are important distinctions you should know about if you or a loved one is experiencing any issues with the heart. Cardiovascular disease is an umbrella term for many different conditions affecting heart function—including diseases of the valves or vessels—while cardiomyopathy affects the heart muscle specifically. With this condition, the muscle can weaken, stiffen, or become inflamed, making it more difficult for your heart to pump blood effectively.
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The U.S. Centers for Disease Control and Prevention (CDC) estimates that as many as 1 in 500 adults in the U.S. could have cardiomyopathy. However, even with that level of prevalence, misconceptions abound, says Dr. Kanny Grewal, a cardiologist at OhioHealth Heart and Vascular Physicians in Columbus, OH.
“Because it’s not discussed as often as heart disease, people may think cardiomyopathy is rare, that it only affects the elderly, or that it’s always fatal,” he says. “That can make a diagnosis scarier than it needs to be.” Here are some of the myths about cardiomyopathy that experts like Grewal encounter, along with the facts.
The myth: There’s only one kind of cardiomyopathy.
The facts: According to the National Institutes of Health (NIH), cardiomyopathy represents a collection of diverse conditions that affect the heart muscle. They include:
- Alcohol-induced cardiomyopathy: True to its name, this is a form of heart disease that’s prompted by excessive and long-term alcohol consumption.
- Arrhythmogenic cardiomyopathy: Caused by gene mutations, this is a rare condition that develops when fatty or scarred tissue replaces normal tissue in part of the heart, leading to irregular heartbeat.
- Dilated cardiomyopathy: This occurs when the lower chambers in the heart enlarge and weaken, causing the heart to work harder in order to pump blood. The most common causes are heart disease or poorly controlled blood pressure, but there are many other possible causes as well, including use of anti-cancer medications, autoimmune illnesses, infections that involve the heart muscle, and exposure to heavy metals like lead or mercury.
- Hypertrophic cardiomyopathy: This is the most common type of cardiomyopathy and is most often caused by abnormal genes in the heart muscle that lead to muscle tissue inside the heart becoming thicker than normal, according to the American Heart Association.
- Hypertrophic obstructive cardiomyopathy: A type of hypertrophic cardiomyopathy that involves blockages of blood flow from the heart.
- Pediatric cardiomyopathy: This occurs in children and can be inherited or acquired through a viral infection, although sometimes the cause is unclear.
- Peripartum cardiomyopathy: A rare form of cardiomyopathy that happens near the end of a pregnancy or within a year of giving birth; the new mother’s heart muscle weakens in a way that leads to fluid buildup in the lungs.
- Restrictive cardiomyopathy: Another rare type, this causes heart muscles to stiffen, which in turn prevents the heart’s ventricles from filling with enough blood to pump throughout the body. Similar to dilated cardiomyopathy, restrictive cardiomyopathy can have a number of potential causes, including genetic mutations, radiation therapy, or chemotherapy.
- Takotsubo cardiomyopathy, also known as “broken heart syndrome,” develops when extreme physical or emotional stress causes the heart muscle to stop working effectively.
“Knowing the type of cardiomyopathy you have is important, since that often determines treatment options, as well as potential lifestyle changes,” says Grewal.
The myth: Cardiomyopathy is caused by genetic factors.
The facts: While it’s true that cardiomyopathy risk is higher if you have a family history of the disease, and you may develop the condition as a result of certain genes, there are many other potential causes.
The CDC lists certain diseases or conditions can lead to cardiomyopathy, including autoimmune diseases—especially those that affect connective tissue—thyroid conditions, diabetes, and diseases that can damage the heart like hemochromatosis, sarcoidosis, or amyloidosis, all of which involve abnormal buildup of substances within the heart. For instance, amyloidosis occurs when there’s too much protein in the heart tissue.
Infections in the heart muscle or having a heart attack can also raise your cardiomyopathy risk, since those events might weaken the heart muscle in significant ways. Certain behaviors or life changes may prompt cardiomyopathy, as well. For example, the extreme emotional trigger that can lead to Takotsubo cardiomyopathy might be the loss of a loved one, a job layoff, or even anxiety over a medical procedure.
Read More: What to Know About Hypertrophic Cardiomyopathy in Kids
The myth: Cardiomyopathy is a terminal diagnosis.
The facts: Being told that you have cardiomyopathy can feel overwhelming and lead to thoughts about worst-case scenarios, but the diagnosis does not have to be a death sentence. Many people with cardiomyopathy manage their condition for years and even decades without episodes of hospitalization or concerns about a shortened life.
In fact, in some cases, cardiomyopathy can be reversible or resolve on its own, says Dr. Robert Segal, cardiologist and founder of Manhattan Cardiology. Alcohol-induced cardiomyopathy is a good example, he notes: Just as heavy drinking can negatively affect the heart, quitting alcohol can provide benefits that help the heart muscle heal.
“Chronic alcohol consumption can also contribute to high blood pressure and heart rhythm issues, and that puts strain on the heart muscle in a way that may lead to cardiomyopathy,” Segal says. “If damage is not yet severe, there’s a chance that you can recover and get back heart function to a large extent.”
Other types of cardiomyopathy might resolve even faster. For example, Takotsubo syndrome is considered temporary for many people, with the heart muscle usually healing within two to four weeks with appropriate treatment, such as medications that promote heart recovery like beta blockers.
Cardiomyopathy does need to be taken very seriously, of course, no matter what type you have, and monitoring is key for preventing more heart muscle damage, says Segal. But the condition can be managed in a meaningful way.
The myth: Cardiomyopathy detection is based on symptoms.
The facts: Shortness of breath, fatigue throughout the day, chest tightness, and a rapid heartbeat are all indications of a potential cardiovascular issue. But it’s important to know that you might have none of these and still have cardiomyopathy. In fact, you may not have any symptoms at all. That’s why the CDC notes that the condition often goes undiagnosed.
Cardiomyopathy can also be the result of gradual changes in heart structure over time, which could take years. Because those changes might be subtle, you may not think of your symptoms as heart-related.
“Fatigue is the cardiomyopathy sign that’s usually dismissed as something else, like being out of shape or burned out from work stress,” says Grewal. “That’s why it’s important to get an annual physical, to detect any heart issues as early as possible, and get imaging tests if needed.”
Read More: 9 Weird Symptoms Cardiologists Say You Should Never Ignore
The myth: Cardiomyopathy occurs mainly in older adults.
The facts: Although you may not develop cardiomyopathy until you’re older, the condition can affect people of all ages, according to the CDC. In fact, there are some types of cardiomyopathy that are more likely in younger people.
For example, the NIH reports that arrhythmogenic cardiomyopathy—caused by gene mutations—usually affects teens or young adults and is the most common cause of sudden death in young people and in athletes. Pediatric cardiomyopathy affects only infants up to their first birthday and can stem from a number of causes, including congenital heart disease and viral infections. Peripartum cardiomyopathy occurs just in those who are pregnant or have recently given birth, so that means the patient is still of reproductive age.
The myth: Cardiomyopathy affects only your cardiovascular system.
The facts: Although it may seem like a physical issue related to the mechanics of your cardiovascular system, cardiomyopathy can also trigger emotional difficulties.
For example, a 2023 study in the European Journal of Preventive Cardiology found that one type of the condition, hypertrophic cardiomyopathy, was associated with significantly higher levels of mood disorders, including depression. In that research, people with the condition had a 74% higher risk of these mental health challenges than those without cardiomyopathy.
Another 2023 study, in the Journal of Pharmacy and BioAllied Sciences, suggests that about half of people with cardiac diseases are prone to develop clinical depression, and that includes people with cardiomyopathy as well as other issues like hypertension. The CDC adds that those who had issues like depression and anxiety before a cardiomyopathy diagnosis may find those conditions worsening as a result of dealing with their heart problems.
“A major part of why cardiomyopathy may affect emotional well-being is the way the condition can make breathing more difficult,” says Dr. Len Horovitz, a pulmonologist at Northwell Lenox Hill Hospital in New York City. “It’s the same reason that a respiratory condition like chronic obstructive pulmonary disease has also been associated with mental-health difficulties. Feeling like you can’t breathe properly, which is common with cardiomyopathy—especially if the condition isn’t being managed well—can lead to anxiety and elevated heart rate, which then makes symptoms more pronounced.”
That’s why integrating mental health care into your cardiomyopathy management is crucial, Horovitz adds, and should be considered even if you haven’t experienced depression and anxiety in the past.
The myth: Cardiomyopathy can be managed only through medication.
The facts: As with many other chronic conditions, medications may be effective for some degree of management. But that efficacy is significantly boosted by lifestyle habits such as regular physical activity, heart-healthy food choices, consistent sleep routines, and stress reduction, as well as limiting alcohol and quitting smoking.
All of these behaviors are linked to better heart function, and as a bonus, they can be a boon for mental health as well. For example, a 2018 study in Frontiers in Cardiovascular Medicine found that physical activity provides a range of advantages for heart performance, including better oxygen delivery through the bloodstream, reduced blood pressure, lower inflammation levels, and improved insulin sensitivity, which are all crucial for the cardiovascular system. Those mechanisms help brain function, too, which can be important both for emotional regulation as well as overall cognitive function.
Read More: How Hypertrophic Cardiomyopathy Progresses in Adults
Another key way to help your heart? Hang out with your friends more often, suggests Dr. Nicole Weinberg, a cardiologist at Providence Saint John’s Health Center in California. While a chronic disease like cardiomyopathy can lead people to decline social invitations with the expectation that an outing might exacerbate fatigue or anxiety levels, the opposite tends to be true. “Some people may think of social connection as optional, but it provides so many health benefits, mentally and physically,” Weinberg says. “With cardiomyopathy, it can help you feel stronger and more supported, which is key for managing the condition.”
In general, like many serious health issues, cardiomyopathy may seem like a scary diagnosis—particularly when misconceptions are a factor—but knowing the facts and using them to drive beneficial habits can help you take charge of your health and be an advocate for your own well-being.