Anxious about your heart? This might help.

Health-related anxiety is common for people with congenital heart conditions. Psychologist Adrienne Kovacs talks about what it is, why it shows up—and how to manage it.

Photo by Reneé Thompson on Unsplash

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Not long ago, a subscriber with a complex heart condition wrote to me in the middle of the night. This person couldn’t sleep; their mind raced with questions. Am I tired because of my heart or because of work and bad weather and life? Am I exaggerating my symptoms, or is it just anxiety? Do I have hypochondria, or are my fears rational since a future cardiac procedure is all but certain? How do I trust my body? 

I struggle with these questions too, and I know I’m not alone. 

Up to 50% of adults with congenital heart disease experience depression or anxiety over their lifetimes, according to a 2022 scientific statement from the American Heart Association. Sometimes this manifests specifically as health- or heart-related anxiety. “Heart-focused anxiety, which ranges between individuals and within the same individual across time, is likely quite common among adults with CHD,” said one 2020 paper. A retrospective review of 100 adults with CHD from 2016 found that 71% reported health or heart anxiety. 

Clinical and health psychologist Adrienne Kovacs has worked with hundreds of adults with CHD. The number one reason people come to see her? Anxiety related to their health. So who better to help answer questions about the topic? Kovacs spent 17 years embedded in cardiovascular clinics in Toronto and Portland, Ore. Today, she works in private practice in Toronto and is the founder of Equilibria Psychological Health. Half the time she works with patients with medical conditions, many of whom have congenital heart issues, and half the time with healthcare professionals. Her academic work focuses on adults with CHD—in fact, she is an author on all the research cited above. 

Kovacs spoke with me about health-related anxiety—how it might affect people with CHD differently, which groups tend to experience it more often and how to help manage it. 

What’s the difference between health-related anxiety versus just being nervous about your health?

Anxiety is a continuum from mild to more severe. It ranges in terms of the severity and the intensity and the frequency and the impact. There's some people who might say, “I worry about my heart every day. Every time I feel palpitations, I wonder if something bad is going to happen to my heart.” And then there are other people for whom it might be more episodic. It might be, “I get anxious before I go to see my cardiologist for every visit,” or, “I'm anxious because I am going in to have a surgery.” The impact can vary because sometimes people will say, “It's annoying, but it doesn't have a lot of impact on my life.” Other people will say that it restricts activities. They might say it makes it difficult to socialize or it makes it difficult to hold a job. It makes it difficult to sleep and to relax. 

There are a couple of diagnosable conditions. There's one diagnosis called somatic symptom disorder, which is when people have genuine physical symptoms that there's a lot of anxiety about. There's another one called illness anxiety disorder, which is more people who are afraid of developing a medical condition. I prefer to focus on the patient experience and the description rather than the diagnostic criteria. I think that that works out well also because it resonates with the person. Sometimes [a diagnosis might] say it's “extreme” or “disproportionate” to this situation. Who are we to decide that? It's really important that we avoid pathologizing understandable psychological reactions.

That’s a smart way to look at it.

We want to describe these as completely understandable, to be expected. Regularly, I'll say to somebody, “Given what you've been through, I would be surprised if there wasn't an emotional component or an element of heart-focused anxiety.” At the same time, just because something is understandable doesn't mean we don't want to work to manage it better. For one person, arrhythmias may be completely understandable given their cardiac anatomy and intervention history, but we want to treat the arrhythmias. Similarly, health anxiety or heart-focused anxiety—really understandable. And we want to help people manage it.

How might health anxiety present differently for people with CHD, given that they might have had a lot of medical interventions since childhood or birth?

People with congenital heart disease can face the same health challenges as people with acquired heart disease, and a lot of additional ones that the people with acquired heart disease never encountered. In addition to things like concerns about managing symptoms or health decline or dealing with devices or potential surgery and intervention, there's also that element of growing up with the heart condition. Beginning in infancy, intensive care units are not calm places. There can be bright lights and loud sounds. There can be challenges in childhood and adolescence and differences between peer interactions or having to go to the hospital regularly. We often describe these potentially as being cumulative and interactive. 

“Regularly, I'll say to somebody, ‘Given what you've been through, I would be surprised if there wasn't an emotional component or an element of heart-focused anxiety.’ At the same time, just because something is understandable doesn't mean we don't want to work to manage it better.”

No two patients have the same experience, so I can't say, “Well, these are the three things that most commonly impact people,” because everybody has a different medical history, a different family and social history. Some people will have really difficult memories of pediatric experiences. [Others would] say, “Everything was great in the pediatric hospital. I don't remember a thing.” For some people it might be health-decline changes. For some people it might be health uncertainty. We want to know what's going to happen next. We want predictability. Health uncertainty is really associated with anxiety and often goes interchangeably. 

There's also the psychosocial components that can go along with it. Sometimes in childhood and adolescence, people get bullied or they get teased, or they're bothered by feeling different, or they have body image concerns. Sometimes there can be difficulties achieving their academic goals. There can be difficulties maintaining a job. Relationships, there can be concerns about family planning. There are a lot of unique considerations.

For some people, anxiety manifests in worrying about the worst outcome, but in all likelihood the worst outcome is not going to happen. When you've had heart surgeries and you're worried about your heart, there's some legitimacy to that worry. 

For some people, they will say, “I've had a lot of really difficult health experiences. Of course I'm going to have more difficult health experiences.” And then there are other people who will say, “I beat the odds every time my parents were told that I might not survive. They said my pediatric surgery was risky. They were worried about this in adulthood, and here I am.”

How might anxiety play out for people who had their congenital heart conditions discovered later in life?

That's almost more like people with acquired heart disease in that there's a demarcation between, “I used to be healthy and now I'm sick.” I would say, even health is on a continuum. People will say “sick.” That actually means nothing. Tell me what symptoms you have. Do they have a cold? Do they have Covid? Do they have cancer? Congenital heart disease? What is it? For some people, it's, “I used to be healthy and now I'm sick.” It's that period of adjustment. Their sense of themself, their sense of identity can be dramatically shifted in a way that people with congenital heart disease may have had time to adapt to.

I also want to make it clear that although health- or heart-focused anxiety is completely understandable, it is not experienced by everyone. Sometimes people actually get really good at managing anxiety because they've had a lot of practice. During the pandemic, when it first started, I remember thinking, “What is this going to be like for the people I work with?” For some people, it was really difficult. And for some people, honestly, they would say, “I've been practicing for this my whole life. I'm used to pivoting and I'm used to taking precautions.”

Adrienne Kovacs said she has worked with hundreds of adults with congenital heart conditions. Photo: Equilibria Psychological Health

You told me that there’s a cardiac anxiety questionnaire that helps measure this. What does it ask about? 

There are three components to it. I don't administer this survey clinically, but I'm always asking about these. The first component is worry and fear. Worry about having a bad health outcome or worry what it means when they have a cardiac symptom. The second is avoidance. Oftentimes when people are anxious, they avoid things. Sometimes people will avoid activities in an effort to protect their heart. They may avoid physical activity or they may avoid travel. The third component is attention and really having this hypervigilance to cardiac sensation. Somebody might say that they check their pulse several times a day, or they check their blood pressure. Again, not a formal diagnosis. It's not like I say to somebody, “Oh, it's essential to have all three components to have health anxiety,” but these are what we think about. 

Are there groups of people with CHD where anxiety is more common?

We did one study and we found that higher heart-focused anxiety was associated with older age, greater heart disease complexity and higher levels of perceived parental overprotection during childhood and early adolescence. Which makes sense. If parents expressed their anxiety about the child's health to the child or adolescent—not surprising that individuals would internalize that themselves. 

Would that extend to limitations on what they could do?

Yeah. We want to make sure that anybody is not avoiding activities out of fear. Ideally, we avoid certain activities or environments or situations because they're medically contraindicated, not necessarily due to anxiety. There's always an element of risk in everything that we do, but I really feel that our goal is to help patients live as full and rich lives as possible. That means not restricting activities. But sometimes parents will, for example, not let their kids go on field trips at school and not let their kids go to sleepovers. That makes it difficult for them to be more independent when they get older.

Disease severity is a little bit inconsistent in terms of associations with psychological wellbeing in adults with congenital heart disease. There've been some studies that have found that it's people with milder and more complex diagnosis that have more [anxiety] than those with moderate diagnosis.¹ It's not super predictable. However, the one subgroup of people with single-ventricle, Fontan physiology, there are unique considerations often in that particular cohort of individuals. They often may develop symptoms in early to mid-adulthood that lead them to think about longer term health expectations.

Personally, I'm on the vigilant side. I want to get stuff checked out. But I know a lot of people avoid that altogether—people who fall out of care, but even people who put off the cardiology appointment. Is that related to anxiety as well? 

It can be, totally. When people are anxious, they can go on one of the other two ends of that continuum. Many people will avoid things because they're anxious. And that's true whether we're talking about medical diagnosis, doing taxes, exploring relationships. Oftentimes we avoid things out of anxiety, and the problem is that avoidance maintains the anxiety.

Many of our approaches to managing anxiety include confronting what it is that we are afraid of. Even talking about it is confronting it. Sometimes people will say, “That's just so scary. I can't talk about it. I can't think about it.” And then through having a relaxed conversation in a psychologically safe, non-judgmental environment, talking about those things can make it less scary. 

And then people will go toward the other end of the continuum, and they become hypervigilant. Very aware of every heartbeat or every change in their blood pressure, every physical symptom. That's not super healthy or super helpful or super enjoyable as well. 

What are ways, in addition to talking about it, that could help alleviate the anxiety?

The first thing I recommend people do actually is let their medical team know about their anxiety and let them know specifically what they're anxious about. I always tell [clinicians] that when a patient tells you they're anxious, ask them specifically what it is they're anxious about and avoid making assumptions. Because sometimes you can do something to help them. 

For example, if an adult with congenital heart disease says, “I'm anxious about upcoming surgery,” that doesn't actually give me any information about what it is that they're anxious about. Are they anxious because they have recollections of a negative surgical experience in childhood or adolescence? Is it that they are nervous about who's going to take care of their pets when they’re in the hospital? Is it that they are worried about having pain in the hospital? Is it that they're worried about the extended recovery? Is it that they're worried about dying?

“The first thing I recommend people do actually is let their medical team know about their anxiety and let them know specifically what they're anxious about.”

The reason we want to ask these questions is sometimes we can provide information that alleviates the anxiety. If somebody is concerned about pain, that's a great discussion to have ahead of time. If somebody is concerned about how they're going to psychologically cope with an extended hospitalization afterwards, that's something that medical teams can help people prepare for. As healthcare professionals, we want to avoid making assumptions why we think people might be anxious. 

For individuals themselves, be specific, if you feel comfortable doing so, and let [your medical team] know what it is you're anxious about because sometimes they can provide information or skills to help manage that. 

That’s great advice. 

If there's anything that you're avoiding because you think you should avoid it, but nobody's talked to you about it, ask your medical team about that. Again, because we don't want people unnecessarily avoiding things. For people who are checking things like their heart rate or their [oxygen saturation], whatever it is, again, ask your doctor. Do they require that information from you? Oftentimes, people's cardiologists, nurses, NPs, PAs can actually be really helpful sharing information about that. That would be my first recommendation.

Again, sometimes talking about things makes things less scary. The first thing often is identifying what these worries are and how they came about. There are different therapeutic approaches. I'm generally cognitive behavioral, which means that we talk about strategies to identify, evaluate and sometimes shift automatic negative thoughts with the goal of coming up with thoughts that are more helpful and healthy for that individual. I would never say to somebody, “This is how you ought to think about a situation.” It's working with that person to come up with, “This works better. When I think about it this way, my anxiety goes from a nine down to a five.” It might not go down to a zero, but it's more manageable. 

Sometimes it may be gradual exposure. Someone might be afraid of needles. We would look at photos and then videos, and then there'd be a really gradual behavioral approach to doing that.

Another behavioral approach might be learning how to communicate with their medical team. If there's something that they ought to know about us to take good care of us, let them know. If we were to say, “Just to let you know, I'm scared going into this procedure because this is what happened during a time before, and I want to make sure we can avoid that happening again.” Anything we can do to help our team help us by giving them specific information. 

For some people it might be learning physical relaxation strategies, so things like breathing exercises or other relaxation techniques. For some people it may be learning how to communicate effectively with loved ones. Sometimes individuals will say, “I think I'm pretty good at managing this, but it's when I talk to my parents or when I talk to my spouse or my partner or my friends or my boss,” they get more anxious.

Definitely. How do you deal with family members and loved ones who make you anxious? 

I often use the framework of assertive communication skills, which means being respectful and acknowledging the concerns and perspectives of others and our own needs and preferences and wants. There are communication strategies that can help us balance both. Things like using “I” statements. Explaining why something is important. Explaining how somebody feels. People learn how to explain why it is that they're looking for different communication or a different level of vigilance about this. 

You said there are other therapeutic approaches too.

The whole mindfulness idea of being aware and acknowledging how we're feeling. Rather than saying, “I shouldn't be feeling this anxious, I should be able to get over this,” why not say, “This is how I'm feeling right now. It's understandable, given my history, and I'm going to work on learning how to manage my anxiety a little bit better.” 

We're often much more compassionate with other people than we are with ourselves. Sometimes imagining, what would we tell a good friend if they were in this situation? Well, we'd probably be kind to them. We'd probably give them encouragement and let them know that it's understandable and they're doing a good job. 

You also wanted to talk about the two-way relationship between physical and emotional symptoms. 

When we experience physical symptoms—maybe we can feel a heart rate or we have chest pain—that can trigger anxiety and stress, which in response can intensify those physical sensations. Or, it can also start with stress, meaning that when people are stressed about their health or about work, school, life, relationships, that also can trigger these physical sensations that then can intensify the sense of anxiety. Oftentimes it's difficult to figure out the chicken and the egg, but for many people there’s a relationship between these physical and psychological symptoms. 

One of the things that happens with anxiety is an elevated heart rate, but that's also potentially a symptom of a heart issue. It can really feed on itself.

A question that I often recommend people ask their medical team is, “How do I distinguish between annoying and concerning symptoms?” Because what may be uncomfortable or annoying may be completely understandable. We're not saying it’s so wonderful, definitely annoying, unpleasant. But how do I know when it's something that I should seek more urgent medical attention? Yes, a heart rate is going to increase when we feel anxious. But there's a difference going up a few points, 10, 20 points versus going up 50 points. It's figuring out what's understandable for you, the individual, and what might be concerning.

It's also helpful to just be reminded that you can ask that question. 

The more specific question, the better. Perfect to say, “I've noticed that when I get anxious, my heart rate goes from this number to this number. Is that okay?” That's a perfect specific question. Much easier for your medical team to answer that question. It's better than saying something like, “I've noticed that my heart rate increases when I get anxiety. Is that okay?”

📢 Have you ever had anxiety about your heart? What helps alleviate it? Leave a comment or email me at theheartdialogues@substack.com.

1. Kovacs later clarified that some studies haven’t observed any relationship between CHD severity and anxiety.