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.
对于一个19岁就被诊断患有骨关节炎的人,以及一个听到“我认为你的孩子患有幼年关节炎”这句话的母亲来说,影响是很大的。随着时间的推移,我的丈夫被诊断为强直性脊柱炎,我被诊断为类风湿关节炎。不幸的是,没有改变的是当地缺乏资源、信息和关怀。我们的儿子被误诊了,甚至做了一次不必要的紧急手术,在我们听到那句可怕的话之前,“幼年关节炎”,加上“我们需要把他送到300英里外的盐湖城去。”
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.
最后,几个好朋友让我去申请,因为他们最坏的反应就是拒绝。想象一下,当我接到一个电话和一封电子邮件,邀请我参加病人领导委员会的成立小组时,我有多惊讶和震惊!小小的我,没受过教育的校车司机从偏僻的地方来的我。
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.
我喜欢在PLC工作的时光。我和一些我可能不会遇到的人建立了友谊。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.
If you’re like me and don’t think your little voice matters, you’re wrong. Your experiences and voice are needed to shine light on what we as a collective community can do to change the access and outcomes for people everywhere.
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!