We’ve all heard the saying that “communication is a two-way street.” In the doctor-patient relationship, especially when the patient has been diagnosed with atrial fibrillation, we should be building multi-lane highways of communication. Here, I’d like to share perspectives from the atrial fibrillation patient community, including what patients have to live with, and to raise some questions to spur further discussion and communication between patients and their healthcare providers.

As the founder of the non-profit organization StopAfib.org, I hear from thousands and thousands of afib patients through forums, conferences and speaking engagements. Unfortunately, many afib patients tell me that their doctors don’t listen and don’t really answer their questions. For some healthcare providers, it’s obvious that all they want to do is just escape and not even have to deal with afib patients. One cardiologist even told me once that afib was the bane of her existence.

New research in the Journal of Cardiovascular Nursing reported that clinicians may minimize the impact on quality of life, and thus not provide information and support. According to the article, “Compared with coronary artery disease and heart failure, afib is not typically seen by clinicians as a complex cardiac condition that adversely affects quality of life. Therefore, clinicians may minimize the significance of afib to the patient.”¹ Such lack of communication may also exist because healthcare providers don’t fully understand what living with afib is like. Afib has a number of unique characteristics that suggest it may be different to live with compared to other heart conditions.

Fortunately, a little information and empathy can go a long way. When healthcare professionals have an appreciation of what it’s like to live with afib, they can provide better treatment. That involves getting beyond the idea that simply controlling an irregular heartbeat with medication is all that needs to be done for afib patients.

No Symptoms = No Impact?

The impact of afib seems to fly under the radar of many medical professionals. When patients have minimal or no symptoms, some healthcare professionals perceive that afib doesn’t affect patients’ everyday lives and simply leave them in afib. The result is often a diminished quality of life. In fact, the typical afib patient has a worse quality of life than even those who have had heart attacks.²

Doctors don’t always understand what afib does to patients. First, afib is physically exhausting. During episodes, the heart feels like a fish flopping around in the chest. When an afib episode concludes, patients feel like a limp dishrag, and often all they can do is sleep. And the effects go beyond the individual episodes. Often during their daily lives, patients who are in afib all the time are fatigued, sometimes lightheaded, and unable to enjoy simple physical activities such as riding a bike or even walking.