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.
2018年，我决定上大学。这对贾妈妈和妻子来说是一个巨大的进步。我需要知道如何在这个医学上非常复杂的世界里为我的家人而战。通过多年参与关节炎基金会的工作，我了解到我是多么缺乏获得治疗的途径。直到我开始攻读病人导航和医疗保健管理的学位，我才知道我在健康知识方面的差距有多大。如果我——一个患有关节炎的了不起的年轻人的母亲，一个患有强直性脊柱炎的妻子，以及我自己也是一名风湿性关节炎患者——缺乏健康知识，那对我正在努力服务和帮助的家庭来说会是什么样子?
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.
- 从这段学习经历中得到的最重要的结论是，我们不能为我们不知道的东西而奋斗。我们需要教育我们自己和我们的同龄人，让他们知道关节炎对我们的生活意味着什么。我们需要教育我们的社区如何获得护理，这样我们才能过上最好的生活。
If you have had experience in access to care that might help us educate others, please reach out andshare 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 andtake action to be an advocatefor all of us with arthritis.
Gain a better understanding of your health care coverage and all the insurance terms. Visit the Arthritis Foundation’sRX 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.
