Sunday, August 13, 2017

Juvenile Arthritis Conference Reflection

      The 2017 National Juvenile Arthritis Conference in Indianapolis is officially over, and I am waiting for a plane home to return to my normal life.

      I have always felt embarrassed talking to my healthy friends at home about my arthritis, even the ones I am the closest to. But when we went around in a circle introducting ourselves and revealing our diagnoses in the Young Adult group at the conference, I did not hesitate before sharing the fifteen-syllable illness that has so drastically altered the course my life. There were several other young adults in the group who were also diagnosed with polyarticular JRA around the age of 11 or 12, and I could very easily relate to their experiences. Last night, I was considered why that oh-so-familiar sense of embarrassment never even popped into my mind. The easy answer is that there were other people around me who "got it." The more honest answer, however, came to me as I walked through the breezy Indianapolis downtown area to pick up dinner, smiling at all of my instant friends who were also wearing their JA Warriors shirts: I am not ashamed of my illness. I am afraid of how I will be treated because of it.

Most of the Young Adults group this morning
      I have always thought that shame and embarrassment were what stopped me from always being forthcoming about my disease, but I am not ashamed of having juvenile rheumatoid arthritis. This disease is not my fault. This disease is not your fault. I know that I try my very best, that I use up all of the courage I have every day, and that I have worked as hard as I possibly could have to end up where I am today. I am so proud of all of the other kids and young adults I met at the JA Conference. They are wonderful friends, to me and to each other. They should never have to be ashamed of their illness, and neither should I. None of us asked for this. The vast majority of us had no idea what it was until all of the sudden our joints were painful and our worlds were upside down.

       What does often worry me is how people will react to knowing about my diagnosis, or to knowing the details of my illness. Will they push me away? Will they cut me out? Will they think that I am being melodramatic? Will they feel uncomfortable? Will they accuse me of lying? Will they insist that young people cannot have arthritis? Will they gossip about my illness to their friends? Will they assume that I cannot do things that normal teenagers can? Will they talk down to me?

      All of these reactions are possible. There is no denying that. But I have decided that I would rather use the energy I spend trying to hide my illness from people to spread awareness and educate others on how people with chronic illnesses and disabilities should be treated. It seems clear post-conference that the only option is to use pain to create a more accepting, knowledgable, and compassionate world. It is possible to push for both acceptance of people with chronic illnesses and the development of a cure at the same time, and I intend on doing so.

Paula (a fellow JA warrior),  Dr. Chira (a pediatric
rheumatologist) & I told our stories to and answered
questions from parents of kids with JA regarding
medical transitions and growing up.
       I found myself in a considerable amount of pain several times during the conference. One night my ankles, knees, and hips hit me with a tsunami of aches, one morning I coped with nausea as I participated on a panel for a parents session, and during our self-love mindfulness practice I could not rip my mind away from my throbbing jaw. Normally, this type of pain would make me quite fearful and panicked. But at the JA Conference, despite hurting, I was not at all upset. What upsets me at this point in my illness is not having arthritis, it is the way I am sometimes treated because of my arthritis. I think that in many ways, this realization offers me new opportunities. If I improve my communication skills surrounding my health, perhaps I can positively affect the responses I receive. If I intentionally surround myself with only kind and empathic people, perhaps I can reduce my arthritis-related stress. If I educate my friends on how to best support me, perhaps I can ease my own painful experience of living with arthritis.

     Coming to the JA Conference, I knew that I would be surrounded by people who understood. But what I did not expect was how similar our concerns and experiences would be. All of these feelings that I ignorantly thought were my own are shared by the hundreds of other JA warriors I spent time with this weekend. We all fear that our friends and family think we are being dramatic about our diseases or exaggerating our pain. We all fear sounding whiny when what we really want is to be understood. We all went through a teenage phase of not taking our medications. We all hate methotrexate with a burning passion, even if it works for us. None of us are quite sure if we talk about our illnesses too much or not enough. Most importantly, none of us want to face juvenile arthritis on our own. We are not the same, of course; we all have our individual experiences and struggles, and we disagree on matters related to our illnesses. But we all "get it," even if we experienced or responded to various challenges much differently.



       On top of the other young adults with juvenile arthritis, I also met several of the conference leaders and Arthritis Foundation staff members who were helping to organize and plan it. There are too many of them to name in a blog post, but I would like to especially thank Arthritis Foundation CEO Ann Palmer, for her presence at the conference, for the attention she offers juvenile arthritis, and for the encouraging conversations I was able to have with her. She inspires me to be both kind and powerful, bold and gentle. Every day, millions of women go to work to save the world, and she is one of them.


      What happens now? That is the question I am faced with as I head back home, to a place where not everyone understands what "polyarticular" means or how difficult living with a chronic illness at age 18 really is. In the name of a focused start, I have made three commitments as a result of the conference, the first of many more to come:
1. To choose honesty, community, friendship, and compassion in the face of my illness.
2. To gather a larger team and raise more money for the 2017 Arthritis Foundation Jingle Bell Run than I have for any previous event.
3. To build stronger relationships with individuals and families in my home community of North Carolina dealing with juvenile arthritis. 

Left to right: Katharine, Emma, Erin & me with pandas generously given
to us by Alpha Omicron Pi!
      I invite you to join me in my mission to achieve these goals, whether you have JA or not! I promise it will be worth your time. To all the friends I met at the Juvenile Arthritis Conference, and to all those I have yet to meet, thank you. Thank you for your company, laughter, and openness. Thank you for reminding me that what I am dealing with medically is truly wild, but is not unheard of. Thank you for your perfectly-timed arthritis jokes and hashtags that would be completely inappropriate if anyone else said them.

      Finally, I am forever indebted to the Arthritis Foundation for organizing such a well-planned and transformative Juvenile Arthritis Conference, and for offering me a scholarship that made attending possible. I hope to attend next year, and I hope that those of you who are affected by juvenile arthritis will be there as well. Feel free to reach out with any questions you might have! We are stronger than juvenile arthritis. I promise. 


No comments:

Post a Comment

I love receiving your comments and do my best to respond to them in a timely manner! If you would like to share something more personal, you are welcome to email me at rksauls@live.unc.edu.