How I became a Patient Advocate
My patient advocacy journey began 30 years ago when shortly after I was married, my husband suffered a severe brain injury. I spent ten months of our first year together in the hospital by his side. He needed round-the-clock intensive care. My waking hours were spent educating myself how our healthcare system works and doesn’t work, overseeing his care, questioning everything that was recommended related to his care, because I was making every medical decision on his behalf.
My goal was to give everything humanly possible to help my husband recover as much as he could. After these emotionally and physically grueling months in the hospital, I took him home. We were thrust into a complex world of unchartered territory that required a depth of strength, love and compassion that I didn’t even know I was capable of. My husband could not perform any of the basic activities of daily living; he couldn’t walk, feed himself or talk to me. I immersed myself in everything I could get my hands on regarding brain injury, caregiving, medications, therapies, insurance policy benefits and limitations, and as many resources & support services I could find. I became, and still am today, his advocate.
What I Learned
Throughout this journey, I have met many others who also found themselves in overwhelmingly critical situations where they had no idea where to begin, or how to get their concerns across, or what questions to ask. They needed help. Emotions were high. Family members were scattered. The medical terminology was confusing and daunting. Decisions needed to be made.
I’ve been there. I know how intimidating, time-consuming, and frustrating navigating the healthcare system can be. My experience has been painful, but it taught me valuable lessons. I soon found myself helping friends and families get through some of their toughest medical experiences. I helped them find treatment facilities, residential care, and community services. I coached them on how to prepare for a doctor visit, or make sure they were getting the benefits to which they were entitled. I stepped in at the worst of times. I listened.
These experiences have led me here—to a place where I can continue to effectively advocate for individuals and families who seek the best possible outcome for themselves or the person they love.
Nothing makes me happier than when my client’s doctor or nurse asks if I am a member of the family. This reminds me that I am doing exactly what my heart is telling me to do. My mission is to serve as your guide and help you navigate towards the best possible health outcomes. This is achievable, because I treat my clients as though they are members of my own family. I don’t believe it should be done any other way.