“Having juvenile idiopathic arthritis has allowed me to appreciate the early challenges I faced throughout life and reflect on the opportunity it has provided for me: whether that is raising money for the annual Jingle Bell Run or working as a camp counselor, I have been able to incorporate a large part of my life into momentous volunteer and leadership experiences. I have transformed what was once considered a crippling disease into a source of strength and motivation for me to accomplish the goals I have set for myself as a person and a student.”
“Since I was two years old and learning to read, I used books and writing to absolve myself of a painful and confusing dissonance in my body. Literary experience heals the wound of my arthritis without undermining the unique privilege of living with, empathizing with, and having to the opportunity to advocate for the disabled. Every human, whether disabled or not, has a unique story, and when you can use literature to express that story, you begin a process of healing, self-actualization - and yes, even inspiration - that can literally permeate through generations.”
“My long journey to diagnosis has challenged me both physically and emotionally. Through it all, I’ve fought to keep a learning mindset. Because of ankylosing spondylitis (AS), I turned my personal challenges into opportunities to challenge the status quo. AS has given me the strength to conquer the world.”
“My lobbying was a success in more ways than one. I was very proud when my Congressman agreed to co-sponsor the bills that would improve the lives of hundreds of thousands of people with arthritis. And just as importantly to me, my experience in D.C. made me realize that I would want to dedicate my life to helping people and advocating for those in need. Arthritis may be my biggest foe, but the opportunities that is has given me and the friendships and experiences I have gained have enriched my life.”
“It has been a strenuous yet undeniably rewarding journey to have endured psoriatic arthritis since I was eleven years old. With the strengthened persistence and tenacity that I’ve accrued in living with this illness and just as I refused to let pain and stiffness hold me back in high school, I shall persevere in my future studies. Arthritis is a draining, unrelenting force that shows no bias in who it chooses, but those that do not let it overcome them have unconquerable possibility.”
“I was thirteen when I was diagnosed with juvenile idiopathic arthritis (JIA), and it hit me like a train. My developing dreams crumbled before my eyes as this nightmare unfolded. JIA posed a life-deﬁning choice for me—to live at the mercy of a disease, or to overcome it. All trials offer two approaches. Victims and victors are decided in the moment a mentality is chosen. JIA continues to be a horrifying challenge, but it has given me the opportunity to be the victor—to learn that I am intrinsically capable, beautiful regardless, and eternally valuable. Today I look steadily in the face of hardship and tell it with certainty, ‘I can.’”
“The advice I would give to anyone in school with a rheumatic condition is that your condition defines you, and you should allow it. However, there is a catch. You are not defined by what your condition does to you, you are defined by what it does for you. You are not defined by how far you can run on the basketball court, how you might need assistance taking your notes, how often you miss class, or by how many times you have to cancel plans with your friends. Living with a rheumatic condition will offer you more opportunities than you can anticipate, teaching you lessons such as patience, compassion, and resourcefulness. The qualities you gain and the lessons you learn because of your condition should be what define you. Find people to be your strength when you feel you don’t have any left to give, and always focus on what you can do as opposed to what you cannot.”
“Schooling Your Rheumatologic Disease
1) Make it work: This is the most important piece of advice I have to offer. There are always accommodations to help you participate in activities, just like your peers.
2) Know thy self: You also have to know your limitations, it’s a skill.
3) Ask for help: There are people who can help you, you only have to ask.
4) Let it go: Sometimes, you will be in ridiculous situations where you have to ask for help. These things you just have to laugh about.
5) Have fun: Despite what your body thinks, you’re only young once!”
“Persistent is the one word to describe my journey through life since I was diagnosed with juvenile idiopathic arthritis in 6th grade. Through my struggles with pain and fatigue I have become a more persistent person. I understand how to endure, yet overcome this suffering. I have learned to be persistent in finding new and creative ways to study since my disease does not allow me to sit in a chair for more than an hour. I have learned the ability to endure and understand suffering, how to strive toward high goals and accomplish them. Living with juvenile arthritis has taught me that persistence is the key to success.”
“My advice: No plan is failed; it is changed for the better. Rheumatoid arthritis causes disruptions in short and long-term plans. In daily life, I experience unexpected symptom exacerbations that force me to treat my body with a gentler pace. In my broader life, I am stymied by stigma and the public’s lack of knowledge of what I am capable of doing. I now focus my efforts on advocating for individuals with rheumatic disease. While this was not my original plan, I am conﬁdent that this role is the best use of my skills and personal experiences, and I am grateful for the opportunity to help others like me pursue their dreams unhindered by the label of disease.”
“When my family and I were invited to attend the annual Advocacy Conference with the Arthritis Foundation I was still not completely as ease telling my story to others. However, as the day went on I became more comfortable speaking up, and since then I’ve had the confidence to share my story with others in the community. This led to the most impactful opportunity I have received; being invited by my Congresswoman to speak in front of the United States Congress. I had the opportunity to speak for the 300,000 children who did not have the same chance to tell their own story. I’ve been able to turn challenges that I face into opportunities because of the confidence I’ve acquired through events like this. Sometimes the thing that is most challenging is finding the silver lining and keeping a positive outlook when you’re faced with a rheumatologic disease.”
“I felt so alone, scared, and victimized when I was first adjusting to my diagnosis - completely alienated from my peers and friends, always wondering why I had to go through the pain. But through the pain, I’ve been able to touch so many lives by speaking at my local Arthritis Walk, helping young kids cope with their disease, and offering support to those going through the same thing as me.”
“Walking is hard. Sitting is hard. Holding a book and washing my hair and going to sleep are hard. It has definitely not been the "college experience" everyone reminisces on. But for those coming to college, I promise there is still tangible, sparkling, existing hope. Hope to have genuine friendships that take care of you when you’re hurting. Hope to have such an amazing time that you’re left speechless. Hope to succeed in your classes and to hold positions in clubs, and to not let this disability define you. You can prove to this bully of arthritis that all of your doors of opportunity are still open, and just because of him, you’re going to zealously run through them.”
“Living with juvenile arthritis for the past decade, I have realized that I am capable of achieving anything I set my mind to. I am a person who refuses to accept mediocrity and will do whatever it takes to reach my fullest potential. This disease has taken so much from me over the years, but it has also given me an amazing opportunity - the chance to help others reach their fullest potential. Since 2012 I have been mentoring other children and teens with arthritis, assisting them in their own journeys, and I cannot imagine doing anything else.”
“Rheumatoid arthritis has taught me many important life lessons, particularly the value of living a meaningful life in the midst of struggle. Through the downsides I have faced with my disease, I have learned not to let the experience of pain lead me because though I have arthritis, it doesn’t have me. I won’t ever let it hold me back from accomplishing my dreams.”