Raising the Patient Voice in the Military

My name is Nick Steen, I’m a military veteran, an osteoarthritis patient, and a JA Dad. This Veteran’s Day – I’m representing my family’s arthritis experience at the American College of Rheumatology’s Annual Meeting. As an Arthritis Foundation Patient Partner at the meeting, I get to teach the participants about why it is so important to listen to patient experiences in health care delivery and design.

I joined the Army right out of high school in 1994. Four years later, I was honorably discharged. My time in the military gave me so much, I learned how to be a leader, how to save lives, and I learned that I had osteoarthritis.

My primary job in the Army was that of a heavy machine gunner, which meant I was either carrying a 30-pound gun or approximately 600 rounds of ammunition that often weighed over 50 pounds in addition to the normal load.

As you can imagine, jumping out of airplanes with this type of weight often made me turn into an anchor as I crashed to the ground. My training pushed my joints to their limit.

“I served my country proudly and I would do it again. But I am concerned that my choices to help keep this country safe have now caught up to me in the form of osteoarthritis.”

There were times that I considered my osteoarthritis as a sign of weakness, or something I deserved for not taking care of my body. For a while, I even refused to take the pills prescribed by the VA to treat my pain. In the end I probably did more damage than good by trying to ignore my OA.

But that all changed for me when my daughter was just 18 months old and her doctor diagnosed her with juvenile idiopathic arthritis.  All the sudden, arthritis was a part of my family’s story in a brand new way.

My daughter and I share our arthritis journey together. She has essentially lived her entire life with this disease, and my adult life has been shaped the same way. We are partners that tackle arthritis together, encouraging each other when we flare and celebrating together when we overcome the challenges of our disease.

My daughter is a teenager now – and with the high school territory, our conversations can be few and far between. But there is one thing that we still have in common & will always feel open discussing: our arthritis.

 “In sharing my experience with my daughter, my partner in this journey, I have come to learn that this disease is not a sign of weakness. This disease does not care who you are or what you’ve done.  It attacks us all – and so we all must take a stand against it together. “

Sharing my story with my community has helped me tremendously. It took me close to ten years before I was ready, but when you are sharing, your experience can really help you along your way. My daughter and I discuss our experience with each other, with our community, with our country to help raise awareness and advocate for a cure.

We have worked hard to raise our voices and advocate to find new treatments and a cure for people with arthritis. And you can too. In just five minutes or less, you can send a letter to your members of Congress to encourage federal investments in research for a cure. Whether you’re a veteran, advocating for funding for a standalone arthritis research program at the Department of Defense – or a parent, hoping to increase the presence of the CDC arthritis program across our country, you can make a difference.

Stand with my family, and the many families like mine, to advocate for a cure. Take action today.

 

 

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