Importance of Community
Living with heart failure, whether you are newly diagnosed or have lived with it for a long time, can at times feel completely overwhelming. Navigating life with heart failure from symptoms to doctor appointments to lifestyle changes isn’t a walk in the park. Having to manage everything can leave us feeling sad, lonely, and disconnected from the world. Finding a community of people who share the same diagnosis is a wonderful source of support and comfort.
But where to start?
The internet is a vast digital world that can be a wonderful source of support. With the plethora of social media sites as well as condition-specific websites, there is a support group for just about anything & everything. I am in many different online groups for my disease processes and they have been great sources of information. While each person will have individual treatment plans, I find it very helpful to read about the tips and tricks and treatment options that are working or not working for people. There have been many times when I’ve read something that piqued my interest and I was sure to make note of it and talk to my doctor the next time I saw them.
Heart failure friends
Find a friend (or few) that you have really connected with whether it be in person or online. Having close friends who share the same diagnosis has helped me overcome the really hard times. I have two very close friends and even though we live in different areas of the country, we connected a few years back and we just “get” each other. We share similar struggles and reach out to each other often to check in and share successes as well. I am normally a pretty energetic & outgoing person but when I am not feeling well I become more reclusive and quiet. Having that support system helps keep me from feeling down.
Advocacy and education
Ever since I was diagnosed I made it a mission of mine to learn as much about the disease process and advocate for it. Advocating for our disease process is super important because there is a lot of misinformation and a lack of information out there. I really enjoy teaching others about what I deal with on a daily basis as it is my hope to make heart failure not something to be quiet about. Even though I am a licensed medical professional, I still learn new things every day about heart failure. I am a firm believer in the “you learn something new every day” phrase because it’s so true!
Willing to help
When in doubt reach out! Don’t be afraid to reach out to people you know to ask for help and/or support. You might be surprised at how many will be willing to help! We aren’t meant to live our lives completely alone. Having a good supportive community of people who share the same diagnosis can and will do a lot of morale-boosting and you might even find a lifelong friend or two!
Do you use exercise to help manage your heart failure?