Getting Started With Advocacy
Last updated: June 2021
Whether you are new to your heart failure diagnosis or a seasoned heart failure patient, advocating for your own health can make a world of difference. Advocating for yourself and your heart can seem quite overwhelming but there are many different ways to get involved not only for yourself but to help others. The following are just a few ways that I have found helpful that I wanted to share.
Become an expert
Healthcare changes so much from year to year. New advances and treatment options are readily becoming available. Learn all that you can about heart failure. Watch videos, join webinars, and read all that you can to better understand heart failure. I have a few online subscriptions that I belong to that send me emails regularly about the different disease processes that I have and have a desire to learn more about.
Tell your story
Your story is powerful. More than you might realize. Tell your story to anyone who will listen. Putting a face to heart failure tends to be more impactful than just reading about it in a medical journal. Open up about your struggles and also triumphs that you have experienced on your heart failure journey. Don’t sugarcoat it either. Be open, honest, and real. Starting a blog is a great way to post all about your personal heart failure story. In addition to getting your story out there, it is also very therapeutic.
We live in the social media age. Share your experiences on your personal pages (if you are comfortable doing so). Personally, I am an open book and share all about my struggles and triumphs health-wise. I have gotten feedback from many people that they find my openness and willingness to be vulnerable really helps them and they are not afraid to come to me with questions. I may not always have the answer but I can at least steer them in the right direction. There are many wonderful support groups online (like this one!) where you can “talk” with other heart failure patients and share experiences and treatments.
Contact your congressional representatives
This might seem like a scary step for some to reach out to congressmen and congresswomen. Writing a letter in support of heart failure research and funding to even your local politicians can be beneficial.
Support heart organizations
There are several organizations out there that support heart health and heart failure specifically. The American Heart Association and the Heart Failure Society of America are two of the main ones. Donate if you are able and seek out ways to become involved with the various organizations.
When I was first diagnosed, I remember having an overwhelming feeling of uncertainty and fear of the unknown. The term “heart failure” in and of itself is very scary! I then decided to turn that fear into determination to learn all I could about my diagnosis not only to ease my own fear but to also help others like me who were struggling.
Have you experienced shortness of breath in the last week?