Community Views: The Biggest Challenges of Living With Heart Failure

While heart failure affects each person differently, there is no doubt that it is a challenging condition for everyone who lives with it. You likely manage your condition with medicines, and you have probably made some healthy lifestyle changes.

But even with treatment, living with heart failure can be overwhelming. To learn more about what you find most difficult about this diagnosis, we turned to the Heart-Failure.net Facebook page. We asked community members to tell us: “What are the most challenging aspects of living with heart failure?”

Nearly 200 members shared their thoughts. Here is a look at some of the responses.

You are tired all day, every day

The fatigue that comes with heart failure can be very hard to live with. It often interferes with your day-to-day life and responsibilities. It may also make you feel like you are no longer able to do what you used to enjoy.

“I am always tired, I don’t sleep well, and have shortness of breath and nausea. Fear of the if and when.”

“The constant tiredness and exhaustion, and can’t fully recover.”

“Fatigue, shortness of breath, and anxiety due to all of the changes in life that follow heart failure.”

“Tired and short of breath all the time.”

“Lowest of the low energy, fatigue, and an inability to do much physical work since stamina and endurance are definitely low.”

Making diet changes

Heart failure can be a big wake-up call about the way you eat, but that does not mean it is easy to change your diet. You may feel like cutting back on salts, sweets, red meat, and caffeine leaves you without your favorite dishes. And it may take time to learn how to include more whole grains, lean protein, and fruits and veggies into your diet.

"Diet."

“The eating. I have so many restrictions. I have to watch my sodium and what I drink.”

“Finding foods low in sodium and fat, and I worry that I will eat things I shouldn't and end up causing more damage.”

Feeling like you are missing out

When you have heart failure, you may feel like you are stuck on the sidelines while those around you are able to enjoy the activities they love.

“I miss being able to do things with my family and friends! I miss being able to walk my dog, do things outside, and do normal things without getting exhausted easily.”

“I miss not being able to go on walks with my wife anymore.”

“The extreme exhaustion and not being able to keep up with my 3 kids. I miss out on so much.”

“Keeping up with everyone while at the same time being left out of things because everyone thinks you are too sick to be involved.”

Being told you "look fine"

It can be incredibly hard when family members and friends do not understand how heart failure has impacted your life. You may look healthy at first glance, but this condition fundamentally changes your body in ways that are not obvious to others. To have others dismiss your limitations and well-being because you "look fine" can be so hurtful.

"The hardest thing about heart failure is that when you don't look like you're in distress, people forget that you still have a disability."

"Thinking heart failure isn't real."

"People look at you and think you're okay, but you aren't."

"Everyone else telling me I'm lazy or slow. I'm fed up with explaining."

"I get upset because I look healthy, and my family thinks I need to exercise and I will get better."

"Always being told how healthy I look despite how bad I feel all the time."

We want to extend a big thank you to everyone living with heart failure for sharing with our community what your biggest challenges are. Your honesty and willingness to share your experiences and thoughts about life with this condition are much appreciated.