About a year ago, I embarked on a personal journey to understand the profound impact of arthritis. I shared a compelling post featuring a video where I attempted everyday tasks while wearing arthritis simulation gloves. This powerful activity significantly deepened my empathy for individuals grappling with severe arthritis, offering a glimpse into their daily struggles. Today, I am incredibly proud and honored to continue this vital conversation, partnering once again with the Arthritis Foundation. Our shared mission is to elevate awareness about arthritis, a condition often misunderstood and underestimated, while simultaneously empowering those affected to make their voices heard. By participating in the crucial Live Yes! INSIGHTS survey, individuals can contribute valuable perspectives that will shape the future of arthritis care and support.
This comprehensive post, dedicated to shedding light on the complexities of living with arthritis, is proudly sponsored by the Arthritis Foundation. However, all insights, personal reflections, and opinions expressed herein are entirely my own, stemming from genuine experiences and thoughtful conversations.
Arthritis is far from merely an “elderly disease,” a pervasive misconception that often clouds public understanding. In reality, it is a debilitating chronic condition that affects individuals across all age groups, including a staggering nearly 300,000 children in the United States. One such remarkable young person is Claire, a vibrant 17-year-old who has courageously navigated life with arthritis since the tender age of 8. I had the privilege of meeting Claire through the extensive network of the Arthritis Foundation, which fosters communities in countless cities and towns throughout the nation. Claire generously joined me for a collaborative craft project, providing a unique opportunity to engage in a heartfelt discussion about her personal journey and the realities of living with juvenile arthritis.
Claire: A Young Voice on Living with Arthritis
Our meeting with Claire and her supportive father took place at my Richwood house, specifically within its renowned, awe-inspiring craft room – the perfect creative sanctuary for our project. My trusty assistant, Madison, was also present, skillfully capturing photographs and meticulously noting all the important details of our conversation, which I, in my eagerness to ensure everyone’s enjoyment, might sometimes overlook. Amidst shared snacks and the gentle hum of creativity, we delved into a profound discussion with Claire, exploring the multifaceted ways in which living with arthritis has impacted her life, her dreams, and her daily routines.
As we began our craft session, I gently but directly addressed the elephant in the room. “First, we need to sand and paint the board,” I stated, then paused, my tone shifting to one of genuine concern, “By the way, how’s your arthritis feeling today?” It was a delicate balance – I wanted to ensure Claire’s comfort and ability to participate fully without implying any doubt in her capabilities. I certainly didn’t want her to feel limited, but I also didn’t want to assume and risk her experiencing pain without feeling comfortable enough to share it.
Claire responded with a soft laugh, a testament to her resilient spirit. “Um, pretty good,” she replied, her smile reassuring me. Understanding my unspoken concern, she added, “I’ll tell you if it’s bothering me. It’s mainly my back today.” Her father thoughtfully chimed in, reinforcing the need for caution, “So, no heavy lifting.” This initial exchange immediately established an atmosphere of trust and open communication, crucial for our honest dialogue.
“Alright, fantastic! I’ve gathered a wonderful selection of crafty materials here,” I announced, gesturing to the array of supplies. “We’re going to create either an advent calendar or a festive Christmas card holder, whichever you prefer.” Claire’s dad chuckled, clearly appreciating the thoughtful preparation. “Sounds great,” he affirmed. Addressing Claire, I added, “I’m not sure how much experience you have with crafting, so we can do as much or as little as you feel comfortable with.” Her eyes sparkled as she confidently declared, “I’m pretty crafty!” “Oh, sweet!” I exclaimed, delighted. “Then just go to town and let your creativity flow!” This enthusiastic beginning set the stage for a truly collaborative and inspiring afternoon.
As we continued to craft, our conversation naturally turned to the pivotal moment of Claire’s arthritis diagnosis. Her journey began at the age of 8, with initial joint pain that her pediatrician, like many, initially dismissed as mere “growing pains.” However, by the time she reached 6th grade, the pain in her wrists and ankles had intensified significantly, prompting a referral to an orthopedic doctor. Various medications and physical therapy were attempted, but the pain stubbornly persisted and flared up again. The search for answers continued, leading Claire’s parents to a pediatric rheumatologist. During her first visit, an MRI of her ankle was performed, but frustratingly, it revealed nothing conclusive. Over the next several months, Claire’s condition worsened, bringing with it not only heightened joint pain but also the added burden of overwhelming fatigue and severe lower back pain.
Undeterred, they returned to the rheumatologist. This time, after comprehensive MRIs of her wrists and SI (sacroiliac) joints, they finally received the long-awaited answers. The imaging revealed undeniable joint damage and fluid, allowing the doctor to definitively diagnose Claire with both Ankylosing Spondylitis and Juvenile Idiopathic Arthritis (JIA). After six arduous years of uncertainty and pain, Claire and her family at last had a name for her condition. This crucial diagnosis marked the beginning of a new phase: learning how to effectively manage her complex health challenges and reclaim a sense of control over her life.
Intrigued by her resilience, I asked Claire, “So, what do you typically do when you experience a flare-up?” She thoughtfully explained her self-care routine: “Well, I make sure to take my NSAID medication, and then I’ll lie on a heating pad to help soothe the pain and just rest. If I have any plans, I’ve learned to cancel them without hesitation and stay home, prioritizing my body’s need for recovery.” Her pragmatic approach to managing her chronic condition was truly inspiring, demonstrating a level of self-awareness many adults struggle to achieve.
I continued, seeking to understand the subtle signals her body sends. “Can you usually tell beforehand that a flare-up is on its way? Do you experience any warning signs, a kind of internal alarm?” Claire acknowledged the unpredictable nature of her condition but also her growing intuition. “It kind of hits me suddenly sometimes,” she admitted, “but I also know when it’s likely coming. For example, if I go out to a friend’s house, then attend a football game, and then stay out late again the very next night… I know I’m pushing my limits, and a flare-up is probably imminent. I’ve become incredibly aware of not overdoing it, of not putting too much cumulative stress on my body.” Her words underscored the constant, delicate balance required to manage an invisible illness like arthritis.
This led to another crucial question: “What was that process like, learning to understand your body’s unique limits? How did you figure out what ‘too much’ truly meant for you?” Claire paused, reflecting on her journey with an incredible maturity. “In 8th grade, I honestly didn’t manage my health very well at all,” she confessed. “There were a lot of intense flare-ups, especially right after I was first diagnosed. But over time, I’ve really learned. Now, if I want to do something fun, like go out to brunch with my friends, I know I absolutely can’t stay out late the night before. If I have a massive amount of homework, I understand that I can’t pile on other activities. I have to manage my time and energy far more meticulously than most of my peers, constantly thinking about the cumulative impact of everything I do.”
Claire’s profound insight into self-management is a lesson many people, including myself, often struggle to master. Her ability to listen to her body and proactively adjust her activities is truly remarkable, especially for someone so young. I found myself incredibly impressed that Claire possesses such an acute understanding of her physical needs, and even more so, that she consistently acts upon those needs. While I do not suffer from arthritis, this is a crucial life skill I can undoubtedly learn from Claire: the importance of truly listening to my body and prioritizing its care. It’s a fundamental aspect of holistic well-being often overlooked in our fast-paced world.
Delving deeper into her daily challenges, I asked, “So, when you mention homework, does just sitting at a desk and doing assignments become difficult? I know prolonged sitting can be hard on your back, but what does that look like specifically?” Claire quickly interjected, elaborating on the nuances of her energy levels. “Yeah, exactly. I can’t sit or stand for extended periods without discomfort,” she confirmed. “There are definitely different levels of activity and their energy demands. Simply hanging around the house might require a certain amount of energy, but I’m also a cheerleader. That’s a completely different — and significantly higher — level of energy expenditure.”
“Yes! That’s what I’m so curious about!” I exclaimed, genuinely fascinated. “Cheerleading seems incredibly demanding – and I’m so glad you’re able to participate in athletics! But what happens when you have an arthritis flare-up during cheerleading?” Claire answered with an air of practiced pragmatism. “I sit out,” she stated simply. “My coach is incredibly understanding and supportive, which makes a huge difference.” This highlighted the crucial role of a compassionate environment for individuals living with chronic conditions.
Curiosity piqued, I pressed further. “So, your cheer squad… I’m assuming it doesn’t involve intricate pyramids or lifting, given your back pain?” Claire clarified the situation, explaining the necessary adaptations she makes. “No, it actually does involve pyramids,” she corrected gently. “I just don’t participate in that specific activity. I used to do stunting, but this year, my upper back has been really bothering me. We initially thought my arthritis might be spreading further up my spine, but my rheumatologist believes it’s a muscle injury, likely caused by my arthritis. Essentially, my back hurts, and I compensate by sitting in a different position, which ended up pulling a muscle in my upper back. So, I haven’t been stunting because of that.” She then added, with a slight grin, “My mom doesn’t think I should stunt anyway.” This candid response illuminated the ongoing challenges and constant adjustments required to maintain an active lifestyle with arthritis.
Seeking to understand the specifics of her athletic involvement, I clarified, “And stunting involves things like flips and being lifted?” Her dad, who had been listening attentively, clarified, “It’s mainly about lifting. Like forming the pyramids they mentioned. They only go about two and a half people high.” I then inquired, connecting it back to her condition, “So, you can’t participate in that because if you have a flare-up and have to sit out, your pyramid would be incomplete?” Claire affirmed, adding another crucial reason: “And also, it’s just genuinely bad for my back.” Ah, right. No heavy lifting, as her dad had initially reminded us. Madison, who had been diligently taking photographs, chimed in with a practical observation, “It’s kind of a dangerous thing anyway, isn’t it?” Claire agreed, “Yeah, especially if you’re the flyer. They get dropped quite a bit.” This candid exchange offered a clear picture of the careful considerations and personal sacrifices Claire makes to remain involved in her passion while prioritizing her health.
By this point, we had successfully completed the initial steps of our craft project, having sanded and painted the board. Claire had now moved on to meticulously painting the charming wooden ‘Merry Christmas’ sign. As our hands busied themselves with the creative task, our conversation naturally drifted toward a broader discussion about arthritis – who it affects, and the surprising variety of ages at which it can manifest. Claire’s dad shared a poignant example: “One of the other honorees we know had arthritis in his knee when he was just two or three years old. Thankfully, they were able to get it into remission quite quickly.”
I then asked, “And does your brother not have any form of arthritis?” “No, he does not,” Claire confirmed. This led me to inquire about the genetic component: “So, it’s not necessarily a genetic condition?” Claire provided a detailed and nuanced explanation, demonstrating a sophisticated understanding of her diagnoses. “No, it actually is,” she clarified. “I have two types: Ankylosing Spondylitis and Juvenile Idiopathic Arthritis. The Ankylosing Spondylitis, which primarily affects my back, is associated with a specific genetic defect that I carry. So, that particular type does have a genetic correlation – it’s linked to the HLA-B27 gene. However, here’s the complex part: you can have the gene and never develop arthritis, and conversely, you can develop arthritis without having that specific gene. In a way, it correlates, but it doesn’t directly predict whether someone will get it. It primarily serves as a helpful diagnostic marker. In my case, having the symptoms combined with the presence of the gene helped the doctors confirm my diagnosis.” Her articulate explanation demystified a complex aspect of autoimmune disease.
Reflecting on her dad’s earlier comment about remission, I asked, “You mentioned that another child’s arthritis went into remission. Are there effective treatments for arthritis that aim for remission?” Claire’s dad, despite humbly identifying himself as an accountant, spoke with such precision and medical understanding that he could easily be mistaken for a doctor. He explained the distinctions in treatment approaches: “For osteoarthritis, treatment typically focuses on managing symptoms with painkillers and anti-inflammatories. However, if it’s a systemic or rheumatoid type of arthritis, simply alleviating symptoms isn’t enough because it doesn’t address the underlying cause. The ultimate goal for systemic and autoimmune types is to treat the root cause and induce remission, allowing the individual to live a relatively normal life until a potential triggering event causes another flare-up.”
I then turned to Claire, asking, “And what is the abbreviation for the type of arthritis you have?” “JIA,” she promptly replied. “So, with JIA, you can actually treat the underlying cause?” I clarified, eager to understand the hope this offered. Claire’s dad seamlessly stepped in, expanding on the advanced therapeutic options. “Exactly. There are a couple of primary approaches,” he explained. “One involves chemotherapy, which works by suppressing the entire immune system. The other, often preferred, are biologics. The idea behind biologics is that they introduce specific blockers that either selectively inhibit a particular part of your immune system or act as a target that your immune system will attack instead of attacking your own body’s tissues.”
Madison, listening intently, drew a parallel. “Is that similar to the medication used for organ transplant patients?” Claire’s dad confirmed, “Yes, actually. Her mom, who also has arthritis, was on the same type of medication used for kidney transplants.” This revelation further underscored the severity and systemic nature of autoimmune arthritis. “That’s incredibly hopeful,” I remarked, “to know that for at least some forms of arthritis, it’s possible to treat the underlying cause, not just the symptoms.” Claire’s dad nodded in agreement, adding another innovative treatment modality: “Another treatment option involves a form of blood transfusion, but specifically utilizing white blood cells. You essentially suppress the problematic immune system with one approach and then replace it with a more functional one. And it’s crucial to remember that the Arthritis Foundation vigorously supports the research and development of all these groundbreaking treatments.”
Our craft project had progressed beautifully. We had moved on to the intricate task of gluing twine onto the board and carefully positioning the clothespins. The goal was to complete the project within a few hours, so it wasn’t overly elaborate, but it was coming together wonderfully. I genuinely thought it was looking fantastic. Before finalizing the design with hot glue, I asked Claire and her dad where they envisioned hanging the board – a crucial detail to determine whether it should be arranged vertically or horizontally. This simple question sparked a truly adorable and serious discussion about optimal placement, a testament to their collaborative spirit. You can see their thoughtful consideration in the images below.
After much deliberation, they ultimately decided on a vertical orientation for their Christmas card holder. I then turned the conversation towards her future aspirations. “So, Claire,” I began, “I know you’re still a junior in high school, but have you started thinking about what you might want to pursue as a career?” Her face lit up as she shared her passion. “I kind of want to be a meteorologist,” Claire revealed. “I’ve always been absolutely fascinated by weather. And it’s not just the typical job you see on the weather channel; there are also meteorologists on all cruise lines, for airplanes, or even at places like Disney World. That would be incredibly cool too.” Her dad, beaming with pride, added, “The people you see on TV represent only about 10% of all meteorologists. The government, for instance, hires a substantial number of them as well.” This collaborative response painted a picture of a well-researched and exciting future for Claire.
We paused for a moment, holding the twine and clothespins in place for a final test. It was crucial to make absolutely sure this was their preferred arrangement before the hot glue made it permanent. This small act of careful consideration mirrored the thoughtful planning that goes into managing a chronic condition.
I then asked Claire a significant question about her future: how does living with arthritis influence her career decisions or her broader plans for life after high school? Her dad responded first, offering a sobering but realistic perspective. “Arthritis is something you continually deal with throughout your entire life,” he emphasized. “It’s not a condition where you simply take a medicine and find a cure. It truly affects every decision, as Claire has mentioned.” Claire elaborated on this, providing a concrete example: “Yeah, like going to places. I can’t go to someone’s house if I have an important commitment the very next morning. It’s all about making conscious choices.” Her dad added, summing it up perfectly, “It’s fundamentally about making choices and understanding your limitations.” He exuded an air of profound pride in his daughter’s maturity and self-awareness. The deep bond between them was palpable, reflecting a family filled with immense love and unwavering support – truly, the most valuable foundation one can have when facing life’s challenges, especially a chronic illness.
As our discussion drew to a close, I asked Claire and her dad if there was anything specific they wished people were more aware of regarding arthritis, or if they had a final statement to offer. Claire’s dad began, drawing a stark comparison: “Cancer rightly receives immense publicity and garners widespread support – almost everyone knows someone who has been affected by it.” Claire then added a crucial point, highlighting the often-hidden nature of arthritis: “People most likely know someone else who has arthritis; they just don’t realize it. Lots of people don’t understand that there aren’t just two types of arthritis. There’s the general perception of ‘you’re old and you have arthritis,’ which usually refers to osteoarthritis. But then there’s also inflammatory or rheumatoid arthritis, an autoimmune condition where your immune system mistakenly attacks your own joints.”
I sought clarification, connecting back to her earlier diagnoses. “So, all the various kinds of arthritis – including the longer, more complex ones you mentioned, which I admit I can’t quite pronounce – do they fall under one of those two broad categories you just described?” I was, of course, referring to Ankylosing Spondylitis and JIA. Claire affirmed with a simple “Yeah,” confirming the general classification.
“Any other final statements? Any food for thought you’d like to leave with our readers?” I inquired, opening the floor for their concluding remarks. Claire offered a powerful, concise statement: “Basically, kids get arthritis.” Her dad then added a profoundly moving observation: “Sometimes, when you see a smile on someone’s face, it doesn’t automatically mean everything is alright. Sometimes, that smile is bravely hiding internal pain or discomfort that lies beneath the surface.” This resonated deeply with the theme of invisible illness. Trying to understand how to act on this, I asked, “What exactly do I do with that information? How can I apply it?” Madison, ever insightful, offered a simple yet profound answer: “I think it just means to be aware.” Claire’s dad echoed her sentiment, “Yeah, just awareness.”
Still wrestling with how to translate awareness into action, I pressed, “So, like, should I watch for subtle signs of wincing?” My question was met with a strangled cry from Madison, who clearly didn’t appreciate my overly literal interpretation. Madison, highly concerned about my clumsy attempt at empathy, exclaimed, “No, mom! What the—“ Claire, ever gracious, quickly jumped in to gracefully save me from my social misstep. “Just, kids get arthritis, and we look ‘normal’,” she clarified, directing the last part of her explanation towards her dad. “I look like a ‘normal’ kid. That’s what you’re saying.”
Claire’s dad then provided a powerful, real-world example to illustrate their point about invisible illness and societal judgment. “Yeah,” he added, “Like, here’s an example: Ashley’s got a handicap parking tag.” (A quick side note: Ashley is his wife, and Claire’s mom, who also lives with arthritis.) He continued, “So she parks in the handicap spot to avoid walking long distances, which can be incredibly painful. She doesn’t use a walker or anything visibly obvious, and people will often make snide comments about her ‘abusing’ the handicap spot.”
“Ooh,” I responded, a wave of realization washing over me. “That is a tremendously valuable perspective. I must admit, I’m guilty of looking at someone who appears ‘normal’ getting out of a handicap spot and silently judging them, feeling they’re exploiting the system. That’s a powerful insight, and something I will absolutely be more aware of going forward.” Madison, seizing the moment, jumped back in with an eloquent summation: “We all tend to make snap judgments, but we have to actively fight past that. Because there are so many things we simply don’t know about each other’s struggles.” Claire’s dad concluded the thought with universal wisdom: “Everyone has issues, whether it’s arthritis or something else entirely.”
“Yes, absolutely,” I agreed wholeheartedly. “But people with visibly apparent issues often garner a lot more immediate sympathy and understanding. I’m a huge advocate for mental health awareness, and it’s truly the same principle: you can’t see the illness, but it’s a very real and often debilitating issue. Invisible pain or discomfort is incredibly challenging for people to truly grasp. As Claire mentioned earlier, unless you have firsthand or close secondhand experience with it, you simply don’t know the full extent. We just have to listen to those who do.” Madison added, highlighting the unique nature of individual experiences, “And it’s so very different for each individual person, too.” “Yeah, it really is,” Claire affirmed, and her dad added, “Oh, absolutely.” This profound conversation underscored the critical need for empathy, understanding, and open dialogue in navigating the complexities of invisible illnesses.
The Finished Christmas Card Holder: A Symbol of Shared Hope
As a final flourish to our collaborative afternoon, here’s a look at the beautiful Christmas card holder we created together. This project, while simple, became a wonderful backdrop for our meaningful discussion. And speaking of collaboration, you can also see a short video about our crafting session:
On a lighter note, I have to mention that Claire was unfairly photogenic throughout our entire session! I kept jokingly complaining about how difficult it was to sit next to her because she naturally maintains such perfect posture, while I can barely manage to keep my knees bent on the counter without looking awkward! I actually ended up sprawling across the counter in a less-than-elegant pose, nearly hitting Claire in the face with my arm, but thankfully, she moved just in time! These moments of shared laughter and camaraderie added a wonderful lightness to our otherwise serious conversation.
Meeting Claire and her father was an extraordinary and deeply moving experience, one that will undoubtedly stay with me for a very long time. They both possessed such remarkably positive attitudes, not only about navigating the challenges of arthritis but also about life in general. I am acutely aware that pain, in any form, can easily lead to feelings of grumpiness, anger, or a myriad of other negative emotions. Yet, observing Claire’s unwavering spirit, I am profoundly inspired to follow in her footsteps. While a smile may not always signify that everything is perfectly alright, as Claire’s dad so eloquently pointed out, it is certainly a more constructive and uplifting response than a frown. I want to cultivate a brighter outlook on the frustrations that tempt me to complain. My goal is to proactively seek solutions, to diligently work towards fixing problems, or at the very least, to effectively manage them with grace and resilience. Claire’s strength has truly offered me a renewed perspective on facing life’s inevitable challenges.
Championing Change with the Arthritis Foundation
One upcoming event that Claire is particularly focused on, and actively advocating for, is the Arthritis Foundation’s inspiring Jingle Bell Run. These festive and impactful events are held nationwide, offering a wonderful opportunity for communities to come together. I strongly encourage everyone to visit their website to discover more about a run happening near you. All it takes is your presence and your support to make a significant difference! As Claire and her dad thoughtfully emphasized, the Arthritis Foundation is at the forefront of the relentless pursuit to find cures for arthritis. It’s important to remember that arthritis is not a singular disease; there are over 100 different types, each presenting unique challenges. Startling statistics reveal that more than 60% of Americans would be unwilling to accept living with an incurable disease. Yet, arthritis, which currently lacks a cure, profoundly impacts 1 in 4 Americans. Even more concerning, new estimates indicate that a staggering 1 in 3 people aged 18-64 are currently living with arthritis. These numbers underscore the urgent need for increased awareness, research, and support.
The Arthritis Foundation proudly stands as the Champion of Live Yes!, fearlessly leading the fight for the entire arthritis community. Their unwavering commitment is to help individuals conquer the everyday battles of living with arthritis by providing life-changing information and invaluable resources, ensuring access to optimal care, driving critical advancements in scientific research, and fostering robust community connections. The Foundation’s overarching goal is to chart a winning course for every patient, guiding families in developing personalized plans that empower them to live a full and meaningful life – making each day another purposeful stride towards discovering a cure and improving the quality of life for millions.
Furthermore, the Arthritis Foundation’s groundbreaking Live Yes! Arthritis Network offers personalized help and crucial support to adults living with all types of arthritis and rheumatic conditions, as well as to parents and guardians of children affected by arthritis. Their comprehensive programs create vital opportunities for connection, education, and empowerment through various avenues: vibrant Live Yes! Connect Groups, a supportive Online Community, and informative conferences. This innovative network, meticulously crafted by the Arthritis Foundation, facilitates connections both in person and online, empowering individuals to live their best possible lives. Within this supportive community, people with arthritis find immense strength in one another, learn effective strategies to manage stress, and gain confidence in taking greater control of their health care journey. It’s a testament to the power of shared experience and collective advocacy.
Take the Assessment: Your Voice Matters
Your unique experience holds immense value. If you or someone you know is affected by arthritis, we implore you to share your voice! Please take this brief, yet incredibly important, 10-minute assessment and openly share your overall experience of living with arthritis. By contributing your personal insights, you are directly assisting the Arthritis Foundation in gathering the invaluable information they critically need. This data is essential for understanding the diverse challenges faced by individuals with arthritis and for shaping impactful initiatives that will fundamentally change the future for everyone living with this complex condition. Your participation is a powerful act of advocacy and a vital step towards a better tomorrow for the entire arthritis community.