Like many people who have Juvenile Arthritis, I was diagnosed before I was old enough to fully grasp what those words meant. Growing up can be scary enough as it is, but coming to terms with the fact that I have an incurable, painful, life-altering disease was more than scary; it was depressing, anxiety-inducing, and left me feeling hopeless.
I was diagnosed with Systemic Juvenile Idiopathic Arthritis when I was nine years old, and at that age, having arthritis meant that I got to skip school for doctors appointments and occasionally had to be poked with a needle. As I got older, I experienced some of the nastier side effects of arthritis such as bullying, intense flare-ups, and loneliness. I didn’t know anyone else my age who had arthritis, and I felt like there was no one I could confide in who truly understood what I was going through.
My mom noticed that I had become reserved and anxious during this time, so she encouraged me to attend a week of summer camp at the Double H Ranch. Located in the Adirondack mountains, Double H is a summer camp specially designed for children with life-threatening illnesses who aren’t able to attend a regular summer camp.
At first, I was hesitant to go. I had never been away from my family before, and I was not particularly eager to meet new people or try new things due to my anxiety and self-consciousness at the time. However, when I arrived at camp, one of the first people I met was another girl in my cabin who was incredibly friendly and outgoing, and I soon discovered that she also had Juvenile Arthritis. She was the first person I had ever met with the same disease as me - and she was my age!
As I got to know my cabin mates throughout the week, we learned that we shared a lot of similar experiences. We also never had to explain ourselves if we were feeling tired or needed some extra time to get where we were going, and anyone with a chronic illness knows how refreshing it is to be around people who just get it.
My new friends also shared some stories that I could not relate to. One girl told us how she gathered a group of her friends to participate in the annual Walk to Cure Arthritis, and another talked about how she was invited to speak about her experiences at a fundraising gala. I heard about all the ways other kids had turned their negative experiences into positive ones, and this was the first time in my life that I realized that I could turn my arthritis into a good thing.
This realization completely changed my attitude and outlook on life with arthritis. Since my first year at Double H, I have become a much happier and more grateful person, and I try my hardest to appreciate and learn from every experience, even the negative ones.
At Double H, meeting other kids like myself was the best thing that could have happened to me as I was in the process of growing up and learning about my chronic illness. I made friends who had experiences similar to mine, understood the pain I felt both physically and emotionally, and helped me rebuild my confidence. I learned that I wasn’t alone, nor did I have any reason to be ashamed of my diagnosis. Through Double H, I was able to find the support system and the role models that I had been lacking, and they taught me how to thrive in the face of adversity.
I attended Double H for four years until I aged out, but I still have my amazing support system of friends and counselors from camp. Now, when I am feeling new anxieties about managing my arthritis in college, switching rheumatologists, or dealing with new symptoms, I know I have friends who will always understand and be there for me.
If you ever have the opportunity to attend a summer camp like Double H, or if you are able to be a mentor for younger kids with rheumatic diseases, you should go for it! The experience can be life changing in the best way possible.
Thanks for reading!
Caitlyn Cyrek