Community Views: Your Biggest Fears with Heart Failure

There is no doubt that living with heart failure takes courage. This diagnosis comes with a great deal of uncertainty, which can lead to a variety of fears and stresses.

To find out more about your experiences, we reached out to community members on the Heart-Failure.net Facebook page. We asked you to tell us: “What is your biggest fear when it comes to your heart failure?”

We received hundreds of responses from those willing to share. Here is a look at some of the most common worries.

Not being able to care for myself

By far the most common response was that community members fear they will not be able to take care of themselves. While this is a common fear, it is not one to brush aside. It can be helpful to put a plan in place for the future. That may mean talking about your care with family members or discussing your options for later in life with a financial planner. Sometimes, having more information and plans can help reduce our worries.

“Not being able to care for myself.”

“I am afraid I will not be able to care for myself and will end up in some god-forsaken home! I would rather pass in my own bed at home.”

“Possibly losing the ability to care for myself.”

Not being able to breathe

Living with heart failure often means dealing with shortness of breath. While some medicines can help with this heart failure symptom, it is still a challenging symptom of heart failure. Plus, when someone is feeling short of breath, it tends to also trigger stress and sometimes panic, which only makes matters worse.

“Cannot breathe.”

“Not able to breathe.”

The uncertainty of it all

Some community members shared that they most struggle with the uncertainty of heart failure. This fear seeps into their everyday life, even when things are going well. You may feel unsure about the details of your prognosis, or perhaps the uncertainty of how you may feel from day to day is taking a toll on you.

“The uncertainty of not knowing how much time you have.”

“When is it coming? I want to enjoy life. Will it happen when I am vacationing?”

Leaving my children behind

Many community members expressed sadness at the possibility of having their time with their children cut short. This is a very devastating thing to think about. To help deal with the separation, some people choose to set aside time to make videos, letters, books, time capsules, or other special objects to leave for their children. These things can help you express what you want to say to your loved ones.

“Leaving my children.”

“Leaving my family.”

“That I will not get to watch our kids grow up.”

That death might be sudden

It can be scary to think that death could happen suddenly and with no warning. As with any fear, it may be helpful to talk to your loved ones and even your doctor about this fear. This can help us process our feelings, which might be big and overwhelming.

“Never see it coming.”

“Suddenly dropping dead.”

“Sudden death!”

Thank you to everyone who was willing to express their fears. We appreciate you being so honest about this sensitive and vulnerable topic.