Daily Living

Telling Others About Your Heart Condition

It can be a confusing time when you're diagnosed with a heart condition — whether it's heart failure, a heart attack, the need for bypass surgery, or the need for a stent or implanted device. You might be unsure if you should talk about your condition or what you should say to friends, coworkers, and others outside your immediate family.

In those first few weeks and months you might find it helpful to share your situation and feelings with others. But it's probably not a good idea to dwell on your heart condition or to talk about it all the time. Doing so might make it harder for you to return as quickly as you can to your normal activities and routine.

Yet when you're first diagnosed, people who know you will be concerned about your well-being. So you will want to think about how much information to share and also be prepared for questions about your condition.

LifeBeat Online talked to three nurses who shared some ideas about talking to others about your heart condition.* Debbie Jones, RN, and Shelby Blackwell, RN, are both with Asheville Cardiology Associates in Asheville, North Carolina. Magda Rocha Valdes, RN, is coordinator for electrophysiology at the University of Wisconsin Hospitals and Clinics in Madison.

Who should I tell about my heart condition?

DEBBIE: Involve your partner of course, and the family members you're close to. If you had worrisome symptoms, for example, both you and your family may have been through a lot before you were diagnosed. So it's a good idea to share your news with them. But it's really up to you.

MAGDA: I would say close family and close friends. For extended family, friends, and neighbors, use your judgment. Some people just value privacy more than others. You might not want to share anything at all with the nosy neighbor across the street.

What should I say about my heart condition?

SHELBY: I don't usually advise my patients about general versus detailed explanations. We just try to give our patients as much detail as they want to know. Some people don't ask too many questions, others want a longer explanation. We have some scientists and engineers who want lots of detail. Once you feel comfortable understanding the condition, you can choose how much to share.

MAGDA: There are also materials you could use to help explain your news. Your doctor might have pamphlets about your heart condition or your device implant. You might want to visit some well-respected websites, like the Heart Rhythm Society, to find information that could be helpful to both you and your family or friends. [LifeBeat Online note: more websites with quality health information for patients and families are listed below.]

It's possible that your doctor has videos to explain device implant, bypass surgery, or heart failure. We also encourage patients' families to watch the videos if they want to.

When should I tell others about my heart condition?

MAGDA: Tell those you're close to right away. That's especially important if you need or have just received an implanted defibrillator. You need to alert people that you could pass out from a fast heart rate, or receive a shock from the device. They need to know what to do if that happens.

But with other heart conditions there may not be quite the same urgency. If you find out that you have heart failure, or that you need a stent or a pacemaker, certainly your immediate family should know. With others you're close to, the timing of the conversation can be up to you.

What issues should I think about when deciding who and what to tell?

MAGDA: Think about whether people will treat you differently. It's possible that people might be wary around you, or might treat you with kid gloves. Other people will be grateful to know about your condition but will treat you the same as they always have.

If you're working, you need to think about who should know at your workplace. For most people — people with mild or moderate heart failure, heart attack patients, pacemaker patients — it might not be necessary to tell people at work. If you've been away from work for a while people might ask if you've been ill. So be prepared with what you could say.

But it varies depending on the person and the situation. One of our heart failure patients needs her employer's insurance coverage, so she needs to keep her part-time job. She feels more secure in her job by not talking about it much to people at work. As long as that's her preference, and she isn't risking her health, that's okay.

DEBBIE: Everyone is different about how private they are, and how much they want to share about their medical history. Unless your heart problem affects your job, maybe no one at work needs to know.

When is it helpful to tell people at work?

DEBBIE: It's probably helpful for defibrillator patients — especially if you might pass out from a rapid heart rhythm. Your supervisor and close coworkers need to know what to do in that case.

SHELBY: One of our defibrillator patients does pass out before she receives device therapy, and this has happened at work. I think she has told quite a few of her coworkers, mostly so it won't frighten them.

MAGDA: Sometimes a heart condition impacts your job. Defibrillator patients who pass out from fast heart rates may not be able to drive a forklift or drive to meetings like they did before. People with other heart conditions might have other restrictions — not being able to lift as much, or lift over the head, for example.

Whenever your heart problem could affect others around you, think about what information would be most helpful for them to know.

I've had heart problems for a while, but they're just now slowing me down. What should I tell other people at this point?

MAGDA: Heart failure patients, for example, do notice that their symptoms get worse over the years. If you find that you can't be as active with others, explain that you may need to slow your pace. But suggest shared activities you can do. With grandchildren, for instance, offer to read to them rather than playing baseball. Or continue going to the zoo with them, but use a wheelchair instead of walking. Maybe put together a family recipe book. This way you're still sharing activities and cementing family ties.

What if I don't want to talk about my heart condition?

SHELBY: It's your choice. Sometimes it's perfectly healthy not to talk about it. But a few of my patients have had a hard time adjusting to their heart problem, and they resist talking about it at all. If you are really anxious, scared, or depressed you might want to talk to a therapist or find a support group. Your doctor or nurse will be able to help you locate someone who can help.

When is it helpful to talk about my heart condition?

To help you monitor your health:

DEBBIE: We urge our heart failure patients to report a weight gain, more shortness of breath, or other symptoms. That helps us adjust their medication. It's a good idea if the patient passes that information on to family or close friends. That way they can look for symptoms, too.

To keep to your dietary guidelines:

MAGDA: It's good to let others know if you have to restrict your diet. For instance, if you have high cholesterol your friends should know that, so they don't bring you high-fat foods. And if you have heart failure, they shouldn't bring you salty foods. But don't overdo it and go to a dinner party with a list of acceptable foods. If you're a guest somewhere, you can always decline the things that aren't good for you.

To educate others:

MAGDA: Talking about it can be useful if you're educating the listener. My job is to help my patients understand the heart problem so well that they can explain it well to others.

SHELBY: Sometimes patients get bad advice from other people. One patient told me she didn't want to get rid of her microwave, but a friend told her it could harm her defibrillator. Or patients hear from someone that they shouldn't use an electric razor or electric saw around a pacemaker. Once I explain that those items are perfectly safe, I think my patients often relay that back to the source. Helping inform others can be important.

* These views are the independent opinions of the individual nurses and do not represent the views of Guidant Corporation.

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