Meet Kasey!
I am a 22-year-old patient who was originally seen at Children’s Mercy Hospital. I am currently in college and will be graduating in spring 2023. I work part-time to put myself through school. My diagnosis is Juvenile Idiopathic Polyarticular Arthritis (JIPA), or just Juvenile Idiopathic Arthritis (JIA) for a more broad diagnosis.
Most people would describe me as a "golden retriever" type of person, but the moms of PR-COIN call me Camp Counselor Kasey. One interesting thing about me is that I have a *borderline* crazy obsession with Marvel films and movies. I can and will talk about any and all Marvel related topics for hours.
My greatest struggle that I'm still trying to overcome is processing someone sincerely wanting to help and those who take pity. I am someone who hates needing help, let alone asking for it, so to say I'm independent is an accurate statement.
Out of everyone who I care about, I think it affects my best friend and my significant other the most. They're the two people who want to fix everything and make life easier for me and those they care about. It's hard for me to accept their help or even let them help me do mundane tasks when I physically can't.
It's something I'm working on with both my medical and mental health journey, so when I find the answer, I will gladly share it. The thing I'm working on the most is more internal mental exercises. Stuff like encouraging self-talk, reminding myself that they genuinely care and want to help--that sort of thing.
My mom actually got me involved in PR-COIN... and when I say involved, I mean I was told that I was going with her to a meeting and talking about my arthritis with other parents and doctors. What high school kid is going to give up an opportunity to miss school, especially when it’s suggested by their mom? Since then, I've been working on helping other patients advocate for themselves and working with the Patient Advocacy Team (PAT).
PR-COIN gave me the opportunity to connect with people who understand what I'm going through. There are other patients now involved, there are parents who I can turn to when I don't want to talk to mine, and I've made truly amazing friends. While they might not have been aware that they were helping me in accepting help from others, they showed me that it was okay through all of their actions and work with PR-COIN.
My current goal is to help grow the PAT and become more active in the network -- or as much as my classes will allow. I hope to use what I learn in my degree program to help build the outreach portion of the PAT.
As an adult, I mainly provide PRCOIN with transitional information from the patient’s perspective. I was also recently on the Take a Pain Check podcast - watch the episode here.
Find out how you can get involved at Get Involved — PR-COIN!