Advocacy Through My Internship | The Washington Center

Advocacy Through My Internship

Imagine someone who has arthritis. I’d be willing to guess that the person you pictured has white fluffy hair and maybe even a few grandchildren. Well, arthritis isn’t just your grandma’s disease: kids get arthritis, too. There are many faces of arthritis, and mine is one of them. This summer, I am interning at the Arthritis Foundation. While I embarked on my internship with goals of professional growth, each day has also been a step toward personal healing.

 

Advocacy in Action:

On my very first day at the Arthritis Foundation, my supervisors told me that they leave the office every day knowing that the work they do changes lives. The Arthritis Foundation has introduced me to the world of advocacy. Sometimes that means preparing civic engagement lessons for patients with juvenile arthritis or outlines for support group sessions for parents whose children suffer. Sometimes it means looking for areas where our country needs to improve health care access for the arthritis community. Sometimes it means sharing my story on Capitol Hill. Today, it means sharing my story with you.

 

A Child of Yes:

To start, I would like to take you back to the year 2001, a year full of tutus, soccer cleats and, of course, many books. I was six years old and living life to the fullest - I never turned down an opportunity to twirl in my tutu, build a snowman, plant a garden or swim in the ocean. I was a child of yes.

 

 

When I turned the ripe old age of seven, I received a birthday present to end all birthday presents: some bright pink Barbie roller blades. My new wheels were the perfect addition to my wardrobe (which at that time was fully inspired by Junie B. Jones). The first time I got to test these suckers out, the leaves on the trees had started to change colors.

 

I had a need for speed that day; I fastened the roller blades tightly to my little feet and set off in the driveway, racing imaginary competitors in circle after circle of careless, innocent fun. When I had taken my final victory lap and congratulated my imaginary opponents, I took off my roller blades only to see an incredibly swollen ankle.

 

It felt like one of those times when you run on a treadmill for too long, dismount the machine and feel as though you have forgotten how to walk on steady ground. I limped back inside and called for my Mom.

 

We went to the hospital that day for an X-ray of my foot (my first of many to come), and the doctors replaced my rollerblades with a new accessory: a purple plaster cast. Six weeks later, I got an upgrade to an Air Cast. Over the next months, it quickly became clear that the swelling in my ankle wasn’t going down...unfortunately, no one could tell us why.

 

Something people don’t often tell you about chronic disease is that the scariest part isn’t the pain itself, but your endless string of questions that go unanswered. In the time between the onset of symptoms and an actual diagnosis, you feel as though you are in some sort of limbo, a purgatory of endless concern without much comfort.

 

Not just growing pains:

No longer was I able to be a child of “Yes!” Slowly but surely, I was becoming someone with too much pain to participate in ballet, kick butt in the soccer game, or even, on my worst days, go to school. Slowly but surely, this unknown force was taking over my life, and I had no diagnosis to defend me.

 

My Mom calls this photo, "The Face of Pain."

 

For a long time, I escaped into the world of books. Each story took me to a new place where I could leave my pain behind and become immersed in someone else’s life. In between the pages of my books, I could adventure vicariously through my literary friendships with Nancy Drew and Sammy Keyes. When I opened the pages of a book, I got to experience a few hours of fantasy where I was enabled by text rather than disabled by my pain.


Many months passed before a pediatric rheumatologist could solve the mystery and identify my symptoms as a clear presentation of Juvenile Rheumatoid Arthritis (JRA). He told my parents and me that JRA is an autoimmune disease that causes severe pain and inflammation of the joints. It was a rather bittersweet moment: while we finally understood the problem, we realized there wasn't a simple solution. I couldn’t just pop a pill. This was a disease that would change my life forever.


Disease can be really isolating—as a nine year old, it was a rarity for the kids in my class to understand my chronic illness. For a long time, I could connect more easily with the grandparents in my life than I could with my best friends. My sense of identity was informed by these connections- even today, I joke with my friends that I am a grandmother in a young person’s body.


Conversely, disease also draws your support system closer. I am so thankful that no matter how alone I was feeling, I always had my family and friends by my side. I really hit the family jackpot when I was born - my parents made every sacrifice possible to ensure that I had the life of a healthy kid, my brother taught me to keep my head up and my standards high, my cousins never failed to make me laugh. Never underestimate the healing power of a good hearty laugh.

 

 

Introducing the Arthritis Foundation:

In an effort to expand my support system, my mom registered the two of us to participate in a Walk to Cure Arthritis hosted by the Arthritis Foundation when I was in the fifth grade. The day of the walk, the sky was hazy and the weather was poor. I remember the way the air was smelled like rain, and the toll that took on the all of the arthritic participants. I wanted desperately to stay in bed that day, but my parents pushed me to go.


 

At the Walk event, there was a Kids Corner; I figured it would be for the children and grandchildren of the many arthritic adults. I was drawn to this tent by the scent of flavored markers and the promise of felt drawings and crafts. My mom knowingly encouraged me to really explore the tent and meet some of the other kids.

 

I remember looking at them and realizing that they were just like me. I saw in their faces that they too were stiff from the weather, that their joints were hurting and that they too were having a moment of discovery. For the first time, when I looked around me, I found a community where I was represented in the population affected by arthritis. For the first time, I realized that I wasn’t the only one experiencing JRA.

 

The Arthritis Foundation gave me something that day that no one else could: an opportunity to heal. Sure, I took medication after medication, but those were just to manage my symptoms. At the Walk that day, I was liberated by the idea that I was not the only one struggling with this disease. That day, I realized that I was more than my diagnosis, that there was nothing wrong with me as a person.

 

My mom has kept this pin in her jewelry box since 2005.

 

Moving Forward:

My arthritis has been a constant in my life since 2001- my disease accompanied me to recess in elementary school, homeroom in middle school and prom my senior year. For many years, I spent time resenting my body for this ugly thing that it would do—for the pain that I endured doing even the most mundane tasks like brushing my teeth, climbing the stairs or taking a deep breath.


The thing is, even though this disease has always been a part of my life, my parents taught me to work through the pain and never be defined by my disease. At the end of the day, I have learned so much about life because of my arthritis. My arthritis has taught me the value of empathy, shown me the importance of belonging to a community and, more than anything, my arthritis has given me the tools to persevere through life’s biggest challenges. My arthritis inspired my passion for public health and community health education; in fact, my arthritis encouraged me to move to Washington D.C. for this summer.


When I accepted my internship with the Arthritis Foundation, I was thrilled about the incredible professional connections I would make this summer. What I didn’t realize was how many personal connections I would make between my job as an advocate and my life as a patient. This position has challenged me to reflect on my experience with arthritis and channel it to help make a difference for the arthritis community.


I have been offered an opportunity through this position to influence members of Congress to support bills that will offer children suffering from arthritis the opportunity for better care. When I share my story with staffers on the hill, I represent the 300,000 children in America that experience joint pain every day. When I share my story, I represent those children who do not have access to a pediatric rheumatologist in their state. When I share my story, I represent children who deserve quality health care so that they may grow up to reach their fullest potential.


I am one of the faces of arthritis, and my internship through TWC has empowered me to use my experience to do some good.

 

 

On a personal note:

This week’s song goes to “Can’t Stop the Feeling” by Justin Timberlake. But not just any rendition- the version that has been on this week’s playlist has been a video by Santa Marta, a retirement community in Kansas City. Old folks dancing will put a smile on even the grumpiest mug, check out this video called “Can’t Stop the Feeling at 93 Years Old.”

 

 

Read Julie's previous blog posts

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