By Sarah Cloud
It’s tough to fight an unseen battle from an uneven playing field. My son was diagnosed 11 years ago with juvenile idiopathic arthritis (JIA), my husband four years ago with ankylosing spondylitis (AS), and myself a few years ago with rheumatoid arthritis (RA). We are active every day in changing the platform for families like ours to gain knowledge on how to access and receive care in non-urban areas.
In 2018, I decided to enroll in college. That was a massive step for this JIA mom and wife. I need to know how to fight for my family in a world that is very complicated medically. I have learned, through the years of my involvement with the Arthritis Foundation, just how lacking my access to care was. What I didn’t know until I started studying for a degree, in patient navigation and healthcare management, was how large the gap was in my health literacy. If I — a mom of a fantastic young adult with arthritis, and as the wife of a spouse with ankylosing spondylitis, and as an RA patient myself — was lacking health literacy, how would that look for the families I am trying to serve and empower?
What I learned through gaining these two degrees were a few key lessons.
- As the mom of a juvenile arthritis (JA) warrior, I knew more than some of my teachers. When teaching how to access drug therapies and service programs, my teachers had never thought of the strategies I learned from other JA moms. Never underestimate the collective brainpower of the JA Mom Tribe. If it can be done, they will find a way.
- When it comes to the complexities of insurance regulations, care plans, federal regulations and such, you really should get a degree for what we do every day to access our care. However, I also learned the right way to navigate the system and how to do that effectively and to speed things up when needed.
- The biggest key takeaway from this learning experience is that we can’t fight for what we don’t know. We need to educate ourselves and our peers on what it means to live life to the fullest with arthritis. We need to educate our communities on how to access care so we can live our best life.
If you have had experience in access to care that might help us educate others, please reach out and share your story with the Arthritis Foundation. I so often hear from others that their voice is not as powerful because they feel their collective experience isn’t as difficult. It’s still the voice of our collective experience. I want to hear from every family about how they fight access barriers. Is it a lack of infrastructure, lack of providers, a lack of resources for your community? What is your barrier to care, and what can we — as moms, wives, sisters, dads, brothers and fellow warriors — do to lift the voices of those who need help? How can we take power and change the conversation?
Join me and my family in the fight and take action to be an advocate for all of us with arthritis.
Gain a better understanding of your health care coverage and all the insurance terms. Visit the Arthritis Foundation’s RX for Access. This resource can help you understand how to choose the right coverage for your arthritis care needs and help you navigate paying for care and managing insurance claims.