I wish everyone had the opportunity to be surrounded by hundreds of people who share their same challenges and struggles #StrongerThanJA— Rachel Sauls (@Rachel_Sauls) August 11, 2017
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|
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.
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.
Walking away from the #JAConference confident that I am #StrongerThanJA. To echo our @arthritisfoundation CEO Ann Palmer, I did not choose this disease, but I do get to choose my response to it. I am choosing honesty, community, friendship, & compassion. As always, I hope you will join me. #juvenilearthritis #arthritisfoundation #kidsgetarthritistoo #JAwarriors #chronicillness #YAchampions
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.
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!