Community Views: Navigating the Healthcare System

Living with heart failure means frequently accessing the healthcare system. Unfortunately, the system often does not feel user-friendly.

We wanted to know how you would summarize your experience, so we turned to the Heart-Failure.net Facebook page. There, we asked community members to tell us: “What 3 words describe your journey navigating the healthcare system?”

Distilling the wide range of feelings into 3 words is no easy feat! Your responses were well crafted, capturing a range of emotions in only 3 words. You said much with very little.

The cost of healthcare

Healthcare is expensive. Doctor visits, drugs, tests, and procedures add up. You spend thousands of dollars each year managing your heart failure diagnosis. It feels frustrating to fight for the care you need. When you do not feel heard by your physician, the cost feels even more unjust.

“Ridiculously, ridiculously expensive.”

“Just a dollar sign.”

“Expensive, female, dismissed.”

Endless frustrations

Frustrations with healthcare run high. Cost and access to doctors and treatments are discouraging. Fighting to be heard, pleading with insurance, and coming up against red tape are ongoing issues. It is hard to gain ground in managing the disease.

“Tiring, frustrating, slow.”

“Darn near impossible.”

“A losing battle.”

“Passing the buck.”

A disorganized system

Many of you find the healthcare system difficult to navigate. It is confusing and unfriendly. You spend a lot of time waiting. You wait for appointments, doctors, insurance decisions, and tests. You spend much of your limited energy needlessly traversing the system. A more efficient system would better serve your health needs.

“What a mess!”

“What a joke.”

“Truly organized chaos.”

“Confusing excessive administrivia.”

“Slow, hurry, and wait.”

Frightening

A heart failure diagnosis often feels scary. The many unknowns are daunting. Waiting to hear what the next test result shows creates anxiety. The cost of the next procedure or drug's impact on your finances makes you nervous. The healthcare system feels fraught with disaster waiting to strike.

“A frightening nightmare.”

“Frustrating, nerve-wracking, worthless.”

“Never-ending surprises.”

In praise of doctors

Some of you noted that having a good doctor can make all the difference in the world. A good doctor works to advocate for your health and well-being. You feel cared for and supported. You do not become lost in the shuffle of the system. Good doctors influence how you view your overall healthcare experience.

“Good doctors matter.”

“Good. Doctors. Help.”

“Finding a doctor.”

“Absolute best cardiologist.”

Life with a chronic illness

Through all the challenges, you continue showing up for yourself. You keep fighting and questioning. Learning to be your own champion is vital for managing this disease. You are determined to thrive despite the obstacles. You will not let the system get the better of you!

“Don’t give up.”

“Pay attention always!!”

“Advocate for yourself!!”

We appreciate the many words you shared with us. Healthcare is clearly a challenging aspect of living with heart failure. We hear your anger and your determination. We are thankful for your presence in the community!

Do you have a heart failure story? Click the button below to share with our community!