Patient Voices Blog

I have found that with most aspects of my advocacy efforts, human connection is paramount in establishing trust with everyone from patient communities to legislators. Virtual platforms have created somewhat of a barrier for advocacy projects in that regard. The fact that despite our distance, I STILL can literally FEEL human connection and compassion from everyone at NPAF makes me know, without a doubt, I’m aligned with some very special folks. Finding your tribe is always something to be proud of!

As any young adult or teen knows, our lives are constantly changing. When creating your care plan, think about where you might be a year or two from now, and health concerns associated with those changes.

From what I witnessed this past year as part of my volunteer service, it seemed so much of the anguish suffered by the patients and families could have been eased by good care planning. So what are you waiting for? Make a commitment today to be a hero to yourself, to your loved ones and to your healthcare community. Let me offer some observations I’ve made that might help ease you into the process and help you along the way.

I have been trying to remind others in my community that they are not alone—providing them resources and addressing issues that may affect their health. In the beginning, my motivation was honestly just my passion for helping my community. I also drew motivation from my own experience being a patient and wanting to share my knowledge as much as possible with others so they know they aren't alone and there is help!

There were many people, including patients and the elderly, who needed help, advice, even just a phone call to see how they are doing and to give reassurance to those living alone. I spent time on the phone arranging meals to be delivered, groceries and pet food to those who could not go out at the beginning of the pandemic. Helping folks understand how to do a zoom call/video call with their doctor gave them much needed comfort.  These challenges forced me to update my advocacy skills so that I could better connect to the heart of my community.

In the beginning of the pandemic, all of us in my community—much like everywhere else—we did not know what to expect. A lot of people lost their jobs and their businesses. That in turn meant losing income, losing insurance, not having enough food. At that time, I was unemployed going through the state unemployment appeals process. It was because of that process that I gained enough knowledge to help others in the area. I got on Facebook, Instagram, Twitter and other social media reaching out to the community and even assisted in other states. I was grateful when the people I assisted received the large retroactive pay so that they could pay back rent, mortgage, and bills.