I was first diagnosed with Lyme disease when I was seven years old. No one knew at the time that this diagnosis would be the start of nearly two decades of illness, of new diagnoses, and of managing my health. I have always been more than my illness, but my experience living with chronic illness has shaped my life and my identity. It’s also inspired me to use my voice to share my story and to empower others to do the same, whether they have a chronic illness or not.
Growing up with illness was challenging for so many reasons. At times, the social stigma surrounding my health was as difficult to come with as the illness itself. As a young, adolescent woman, I often felt that my symptoms were misunderstood or downplayed by those around me—including clinicians I sought care from.
I had to learn early on that taking an active role in managing my healthcare could make a significant difference in my health. I’ve also come to learn that to take a more active role in managing my health, I need access to my health data. I’ve moved and transferred doctors so many times and collecting my data into one place has taken an exorbitant amount of effort—many phone calls and faxes, lots of printing paper records, and hours on the phone with hospital systems to track down old test results and physicians notes.
Gathering, organizing, and filing paper records has become a natural part of life for many living with chronic illness and disease. Naturally, I was thrilled when I found OneRecord and learned that I’d be able to create my own consolidated health record digitally, pulling my data from health providers across the nation, including those connected to the CommonWell Health Alliance network.
It is incredible to have the ability to log in and have access to records from multiple care sites available to add to my personal health record in minutes. I’ve never been able to access my health data with the click of a few buttons. I believe this ability is game-changing, not only for me, but for others like me moving forward.
It’s not perfect, but the network connections are expanding and improving all the time, and I now know that having a comprehensive electronic version of my personal health record is within reach.
Through my role as co-founder and president of “Suffering the Silence,” a non-profit organization dedicated to breaking the stigma surrounding chronic illnesses and disability, I discuss patient empowerment often. And what an empowering feeling it is to be able to access your health data in one location and use it to advocate on behalf of yourself.
As a patient, I’m very hopeful and can’t wait to see how continued improvements in Health IT make the health care process a little bit easier—for us all!
Allie Cashel is an author, a passionate advocate for increased awareness of Lyme disease, and the co-founder of the online community “Suffering the Silence,” a space for patients, friends, and family to share and witness the true living experience of Lyme and other chronic illnesses.
OneRecord is a digital health company that empowers consumers to access, aggregate and share their healthcare data with the people and organizations that they trust. OneRecord has been a CommonWell member since 2017.