About a decade ago, Zoe Zeerip became one of the approximately 300,000 children and teens in the U.S. living with juvenile idiopathic arthritis (JIA). After spending much of her teens in denial about her arthritis, she began to embrace advocacy and raise awareness for the challenges of living with arthritis as a child and young adult.
She and her older brother Zeppelin Zeerip produced Joint Effort, a short film about her journey from getting diagnosed to where she is today.
We asked Zoe and Zeppelin about their decision to share her patient journey in this raw and inspiring short film and got more details on how Zoe is not just adjusting to, but thriving with, life with juvenile arthritis.
CreakyJoints: Can you tell us more about your journey to getting diagnosed with juvenile arthritis?
Zoe: When I was 12 years old I started experiencing severe aches and pains in my wrists, knees, and back. I was wearing two wrist braces, walking with crutches, and attending physical therapy several times a week. I went to various doctors’ appointments for about a year attempting to get a diagnosis. We thought maybe I had torn my meniscus or hurt my wrist playing volleyball. No diagnosis came from these appointments and scans, so one doctor suggested an exploratory surgery on my right knee.
It turned out the inside of my knee was “all spider webby.” I remember the doctor saying, “I don’t know what I am looking at. It’s either lupus or rheumatoid arthritis.” From there I was put on a waiting list for six months before I could see the only pediatric rheumatologist in my region.
I remember sitting in the doctor’s office when he first showed me the needle I would have to inject into my stomach once a week. I can still picture my mom hugging me and coaxing me into doing the first shot. It was a terrifying experience, yet my only option to prevent my arthritis from further damaging my joints. Now that I have been properly diagnosed, I am able to manage my pain and joint health with the proper medications and lifestyle choices.
CreakyJoints: When you were first diagnosed with juvenile arthritis, how much did you understand about it?
Zoe: I think I was too young to truly understand what was really going on with my body. I understood it was going to be something I would have to live with forever and that it would mean I couldn’t do certain sports, but I don’t think I was able to fully wrap my head around the impact that it would have on the rest of my life.
At such a young age, the hardest part was accepting that a new disease was now a part of my identity. I remember being in denial because I didn’t want sympathy and I remember thinking I didn’t need external support. My immediate reaction was to be tough.
Over time, this is changing. I am learning to embrace my disease and story.
CreakyJoints: Zep, what was it like for you to learn about Zoe’s diagnosis?
Zep: When Zoe was diagnosed, I also didn’t understand the magnitude of it. I knew she was in pain, but so was I — I had broken nearly 15 bones snowboarding and figured injuries were just part of life. It has taken years to fully grasp what living with arthritis means and to realize all the ways it can affect your life.
CreakyJoints: What were some of the main ways having JIA impacted your life as a teenager?
Zoe: JIA was definitely a curveball that I did not know how to deal with, nor did I want to give much of my attention to dealing with it. I had just moved to a new school, our house had burned down, and I was dealing with the typical teenage drama from my freshman year of high school. Arthritis was potentially the most impactful of all the changes at that time, but I didn’t want it to be. So I tried very hard to live a normal teenage life. I joined the crew team, continued running, and didn’t seem to miss a beat of normal teenage life.
But I became more aware of the impact that JIA was having on my body as I continued with my sports. I had to reflect on what was good for my body. I knew that rowing was horrible for my back and created unbearable aches in my knees. I felt the toll that running was taking on my ankles and weakness in my joints was becoming more prevalent.
I had to quit the crew team during my junior year of high school due to the severity of pain. This was the first time I truly accepted that JIA was a part of me and that I had to accommodate my lifestyle to fit my body’s capabilities.
Thankfully, a few years later, I found biking as an avenue to continue being athletic and outdoors.
CreakyJoints: How is your health now? Can you tell us a little about your treatment regimen?
Zoe: My current arthritis situation is so much better than 10 years ago, due to a heavy reliance on prescription medication. I currently give myself two shots of Enbrel [a biologic medication] to help manage the pain associated with my JIA. I still live with pain and the side effects of joint degeneration, but have learned what activities tend to cause such discomfort.
Currently, I am struggling with an ankle pain that just won’t go away and have only been able to get relief from cortisone shots. I am hopeful that my diet also helps to create less inflammation in my joints.
CreakyJoints: What are some things that no one would know about what it’s like to live with JIA unless they had it?
Zoe: Unless you will with JIA, rheumatoid arthritis, or another invisible disease, I don’t think you can truly understand how hard it is to embrace this type of story. Arthritis is a disease that you can often “cover up” fairly easily, so it takes a lot of courage to acknowledge and its impact on your day to day life.
CreakyJoints: What are your hopes and goals for being a JIA patient advocate?
Zoe: I hope to inspire others to take charge of their story and to not be ashamed of something they cannot control. I am continuously amazed at how many people have some type of hidden disease that they don’t feel comfortable talking about it. I think many of us do not want to be seen as a victim or get a sympathy vote.
Zep: There is so much strength to be gained by embracing your story.
CreakyJoints: For other kids, teens, and families struggling to adjust to a JIA diagnosis, what would you want them to know about your journey and story?
Zoe: I would like other teens and families that are living through the same nightmare that I went through to know that just because you have arthritis, you are not defined by it. Arthritis may limit you in some capacity, but you get the chance to define what arthritis means to you.
CreakyJoints: What does the phrase ‘Joint Effort’ mean to you?
Zoe: ‘Joint Effort’ has double meaning to us. First, it refers to my joints and the continuous effort that I must put into maintaining them and using them so I can live the life I want to lead.
Zep: Second, I think it has an underlying tone of community. If we can all embrace our shared struggles then we are joined not only through a shared disease, but a shared strength.
To see more of our campaign for Joint Effort, visit creakyjoints.org/jointeffort.
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