We are spotlighting two people this month who are sharing their experiences as members of the Arthritis Foundation’s Patient Leadership Council (PLC). Learn how to apply to join the PLC at the end of this post.
By Sarah Cloud | Sept. 1, 2021
An arthritis diagnosis can be one of surprise and acceptance or one of absolute fear. It all depends on what words precede the word “arthritis” and how your health care provider may explain and support your diagnosis.
As someone who was diagnosed at the age of 19 with osteoarthritis and then as a mom who heard the phrase, “I think your child has juvenile arthritis,” the impact varied greatly. As time passed, my husband was diagnosed with ankylosing spondylitis and I with rheumatoid arthritis. Unfortunately, what didn’t change was the lack of local resources, information and care. Our son was misdiagnosed and even had an unnecessary emergency surgery before we heard that horrid phrase, “juvenile arthritis,” combined with “We need to send him north to Salt Lake City, 300 miles away.”
The doctors in our rural area hadn’t seen a patient like our son. I didn’t know another parent on this journey for over two years. In the years that followed I found an amazing group of moms on Facebook who helped us along our journey, and we became heavily involved in the Arthritis Foundation.
One night, I was reading a newsletter and there was a link for a newly forming Patient Leadership Council (PLC). The Foundation was looking for people to apply, but I almost didn’t. I had talked myself out of it. Why? Who wants to hear from a school bus driver in the middle of nowhere who has no letters behind her name? I didn’t have any formal education and no connections to the Foundation, as there was no local Foundation office. We joked at national events and online that we lived in “No Man’s Land.” We lived in Hurricane, Utah, located 16 miles from Arizona and about 40 miles to Nevada. It’s often known as “Land of the National Parks,” but not much else.
Eventually, a few good friends told me to apply because the worst they could say was no. Imagine my surprise and shock when I received a call and an email inviting me to sit on the Inaugural panel of the Patient Leadership Council — me! Little ole me, the uneducated school bus driver from the middle of nowhere me.
作为委员会的一员，我可以表达我作为一个母亲的声音，尤其是作为一个农村母亲，当涉及到我们需要什么和考虑什么时。我儿子受到的照顾与我们在盐湖城的朋友受到的照顾大不相同。我们有同样的医生，但途径不同。如果我们遇到问题，单程需要6个小时的车程，如果我们负担得起，还需要住酒店。
Most the time we couldn’t afford a new set of tires for the car to make the trip, let alone to stay the night. This meant that many times our son had to receive care once every six months or by phone. If we had problems, I had to email pictures to the doctors in Salt Lake City, then they would tell us what to check for and what to do. Think: pre-telemedicine. I couldn’t just schedule him for clinic. Scheduling for clinic meant a day off work, having to find a substitute, arranging transportation, gas, meals and entertainment for a then-preteen who hated car trips.
To be able to voice what was different from our perspective gave voice for every rural family the foundation serves. It allowed us as patients to say: “Nothing about us without us.” We have been asked to weigh in on many things, from the direction of events to targeted market research studies. We never know what will come our way to study and voice feedback on.
I have loved my time on the PLC. I have formed friendships with people I probably wouldn’t have met. With these friendships and support and encouragement, this mom went back and earned a college degree in patient access and we have since moved to rural southwest Missouri, where, Ironically, we face many of the same challenges with lack of resources and care, but this time I know I have a voice and resources to change that.
如果你像我一样，认为你的小声音不重要，那你就错了。我们需要你们的经验和声音，让大家知道，我们作为一个集体，可以做些什么来改变世界各地人民的获取和结果。
If you’re interested in joining us, apply. The worst they can say is no.
Interested in applying to join the Patient Leadership Council (PLC)? Applications are currently open! You can applyHERE. Deadline for application submissions is 11:59 p.m. Oct. 15, 2021. If you are selected for next steps, we will notify you by early to mid-November. Thank you for your interest! And spread the word!