Meet Kyleigh!

Partnered and Empowered: Our Journey with PR Coin

For me, my greatest struggle is not being able to do all the things I want to because my Arthritis gets in the way. This includes not being able to hang out with friends or family as long as I would like to because of my pain.

This struggle has definitely gotten better since the beginning of my diagnosis due to medication. Other than medication, some things I’ve done that I’ve learned helped me are resting the day before I go out so that I can do things longer, planning things that don’t require much walking, and using heat packs or ice on my joints.

Hi! My names is Kyleigh O’Brien. I’m 16 years old. I just finished my sophomore year of high school and I’m going into my Junior year in August.  I was diagnosed with Juvenile Idiopathic Arthritis at age 8 and it has been a constant battle since then. I have never reached full medicated remission, never been able to wean medications, don’t know a life without pain, weekly shots, daily meds that have varied from 12-24 different medications and monthly infusions. In addition to my JA, I was diagnosed with Crohn’s Disease after my JA diagnosis at the age of 8, Dysautonomia at the age of 11, a genetic clotting disorder at the age of 13 and several complications that have occurred due to disease and treatments. 

For me, my greatest struggle is not being able to do all the things I want to because my Arthritis gets in the way. This includes not being able to hang out with friends or family as long as I would like to because of my pain. This struggle has definitely gotten better since the beginning of my diagnosis due to medication. Other than medication, some things I’ve done that I’ve learned helped me are resting the day before I go out so that I can do things longer, planning things that don’t require much walking, and using heat packs or ice on my joints

To explain why I feel so strongly about being a partner in my care, I want to explain an experience I’ve had where I felt excluded from my care. I feel it important to note that this experience did not occur with rheumatology at any center, but it shaped me and greatly affects the care I will always seek out for myself in the future. There was a time in my healthcare journey where I did not feel heard by my physicians and I didn’t feel like I was a part of my healthcare decisions and that my voice wasn’t being heard. I remember feeling frustrated and annoyed. I felt hopeless regarding the treatment of my disease. I felt as if I didn’t matter to my physician. I certainly did not feel as if I was a partner in my care. 

When I was 11, I wasn’t able to attend school full-time, due to my health and the requirements of my school district. At the time, I was given no choice by my school district and how I felt about attending school with my friends didn’t matter and homebound was forced on me. I asked my doctor to supply a note so that I could use a wheelchair during a family outing to the amusement park. Because of my joint pain, I was reliant on a wheelchair to enjoy a full day outside with family. When I asked my doctor about this, they said that I didn’t deserve a day out at the amusement park with my family if I couldn’t attend school full time. 

This stung, this hurt. I did not choose to be sick, I was not choosing to not get out of bed. I wanted to live my life and enjoy activities with my family and the only way I could last as long as everyone else was to use a wheelchair. It certainly was never what I wanted or my first choice.  I did not feel like there was mutual respect, trust or open communication with this doctor and the conversation ended there. I felt belittled and like my disease and healthcare plan was completely out of my control. To have this used against me as a reason I was undeserving of spending time with my family like other kids my age was really upsetting. 

To me, being a partner in my own care means having open communication with my doctor, being able to trust my doctor as well as my doctor trusting me, having mutual respect and feeling like my voice matters in the decisions that are made about my healthcare. Although I always loved my rheumatologists and I felt comfortable speaking with them, my mom wanted to get a second opinion and I agreed. I want to emphasize that I’m not stating that any rheumatologist is better than another or that any center is better than another, but that the tools put in place at a PR-COIN center greatly enhance care and in so doing improves my patient experience. 

I noticed a difference right away when I was handed an iPad to fill out questionnaires. We were given a new patient packet and we went over the shared-decision making cards and the goals of the Treat-to-Target initiative. The self-management assessment and barrier tool really helps me feel like my opinion matters. Before using it, I never thought a physician cared about how medication made me feel. Honestly, I’m not sure I even brought up how things made me feel because I didn’t think I had any say in the matter. I will fully admit, I’m not a complainer, which in most instances is a positive trait. My mom tells me in my very first rheumatology medical note the doctor wrote I was a “poor complainer”. Didn’t that just mean I was a strong little girl who stayed positive? 

Now, my mom will tell you she cares for lots of really great complainers and she’s grateful that I’m not like that; however, she has also told me that stating my symptoms honestly along with my feelings to my physician is not being negative or complaining. It is part of advocating for my healthcare needs. I’ll admit I’m a happy, go-lucky person that still tends to naturally want to smile and say all is fine even on really bad days, so the self-management assessment really helps me to stop and think and is training me to better communicate my needs to my physician. While this tool is only used in my rheumatology office, it helps me with all of my physician communication. 

I want to be a part of the PR-COIN patient group because I want to continue to help guide improvements for other pediatric patients. My life has been blessed by those that have researched and created the resources that I am now able to use at my appointments. 

I want you to remember my story, remember how I felt when I was excluded from my care, remember what my mom described as the difference being a part of a PR-COIN center made to her as my mom and my best advocate. Take these with you and continue the amazing work that is being done, so that future pediatric patients only know what being a partner in their own care feels like!!

Visit our Get Involved page to learn more about how you can get involved in PR-COIN.