a woman with heart failure with her head in her hands is surrounded by people's faces experiencing a wide range of emotions

Heart Failure Diagnosis Experience

Along with a slew of "not for prime time" words, I found myself using many new words to describe my heart attack, condition, and how I live post-diagnosis. A recent survey by Health Union on how people describe their experience after diagnosis confirmed I wasn't alone.

Depressing, devastating, and emotional

These are three words that I also used at first to describe my heart failure diagnosis.

Depressing

One survey participant remarked, "I thought my life is over. If I can't do as I want, what is the point? What didn't help was that the medications caused me to be exhausted all of the time. I couldn't function, and it caused depression. Everyone kept saying 'no' to me – 'no, you can't eat that,' 'no, you can't do that.' I didn't know how I would survive the aftermath."

Devastating

One respondent said, "Devastating. I was unsure about what to do and how to protect my family".

Emotional

Another respondent recalled, "I cried at home, at the doctors, in the car, during cardiac rehab. I couldn't control my emotions. Being on blood thinners and antiplatelets didn't help – as I rubbed the tears away, I kept giving myself black eyes. As if things weren't bad enough. Nobody seemed to understand either. I wanted to scream, 'Yes, I'm crying; you would too if you just had this happen to you!'"

Frustrating, scared, and confused

Frustrating

"Scary, had no clue what was going on," says one respondent. How true is this? In my experience, it is new, scary, and incredibly frustrating to learn that you have heart failure. Frustrating seems like an understatement.

Scared

You were just diagnosed with heart failure – that is SCARY, and yes, you can and should be afraid. After a massive heart attack, I left the hospital and went home scared of every twitch, pang, and pain. Was it happening again? If I accidentally had an extra cup of water over the 2L limit, would I have another?

Confused

How did this happen? Why me? I thought I was healthy? I am too young for this!   Someone wrote, "Confused at first. But then started to understand".  At first, there is a lot of information thrown at you. Overwhelming, but then you start to absorb it.

Optimistic, a wake-up call

Optimistic

I was happy to see the word optimistic on the list. Someone wrote, "I decided I wouldn't dwell on this every day, and I would go on living my life." Going through a traumatic event does put things into perspective. As best I can, I live every day to it's fullest. I've learned to trust both my body and my care team.

Wake-up call

"A real wake-up call to exercise and eat better." I can't think of a better motivator. I am much more mindful of what I eat now - everything in moderation.  I also make it a point to exercise and exercise regularly. While I cannot exert like I used to, I walk faster and exercise that heart muscle a bit.

But things do get better

I have learned five years out that it does get better, but it takes time. Like most things, we go through a process, a process that includes many stages after diagnosis. At first, we are surprised and shocked, followed by devastation.  Frustration sets in, and you know you have to change your life because of heart failure, and yes, you need to develop all-new habits to support your health. It then gets better, better each day.

If you think you are alone, you are not. Keep following our site to read how others are coping and how they cope. Respond to the articles and share with others who are going through the same thing. You are not alone.

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