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Juvenile Idiopathic Arthritis: An Internal War
An illness narrative by Paige Flanigon
Picture yourself lying in bed fast asleep. Eyes glued shut, dreaming about whatever it is you dream about when all of a sudden you feel pain. First in your knees, then your knuckles, then your shoulders. Soon enough, this mysterious throbbing has enveloped your entire body. It feels as if each and every joint is about to explode, like the feeling you get right before your knuckles pop, except one thousand times more intense. You lie there for a few seconds disoriented and alarmed as the stinging, stabbing, pinching sensation disarms all five of your senses. Then you remember: there is nothing to worry about, your arthritis is just flaring up again.
This is the reality Madeline Bagshaw lives in. Maddy is a nineteen-year-old student at the University of North Carolina at Chapel Hill. She loves fashion, friends, and puppies. Here on campus she studies biology and plans to pursue a career researching genome therapy. Maddy has chocolate brown hair, pale skin and vibrant green eyes. She is somewhat tall, standing around five foot seven and has one of the most intense cases of RBF I have ever seen. Although she appears cold and intimidating at first, the more you get to know her, the more you realize she is one of the coolest and kindest people you will ever meet. If one were to look up a strong and independent woman in a Google browser, Maddy’s smiling face would be the first to appear. She is fiery and always has the best outfits. Even more so she is extremely intelligent and responsible, but this girl knows how to have fun. She balances her school work and her social life as if she was a professional tight-rope walker. Maddy also happens to have Juvenile idiopathic arthritis or JIA.
Since the age of twelve, Maddy has experienced the excruciating pain that accompanies having juvenile idiopathic arthritis. Growing up Maddy had always experienced stiffness and pain in her hands, but in the beginning of 2020 (she was seventeen at the time) the pain became unbearable. “The thing is with arthritis, is it kinda starts out and then all of a sudden it’ll get really bad.” These are the words Maddy used to describe the escalation of pain in those who suffer from the autoimmune disease. One can only imagine the frustration of dealing with recurring pain and not knowing what is causing it. During this time period, the pain she was dealing with prevented her from completing the simplest of tasks, including opening a water bottle. When interviewed, Maddy expressed many frustrations to me about her symptoms being dismissed by her doctors. For years she had brought up the pain and was met with comments like “you’re fine,” “you’re just being dramatic,” “it’s just growing pains.” After years of being disregarded by her doctors, Maddy understood she had to advocate for herself and make it clear that what she was feeling was real. Now older and more confident in herself she told her doctor that her pain was not normal. She knew there was something wrong with her body. At one point in time, the aches were isolated to the joints in her hands, but it has now migrated to her shoulders, elbows, ankles and knees as well. She knew this was not normal. Her doctor referred her to a rheumatologist, and within one visit it was clear that she in fact had juvenile idiopathic arthritis. It wasn’t until she was seventeen, that she was finally given a diagnosis of polyarticular rheumatoid factor negative juvenile idiopathic arthritis.
Juvenile Idiopathic Arthritis affects children under the age of sixteen and is a form of arthritis that is chronic and long-lasting. Arthritis is inflammation of the joints, this inflammation causes joint pain, swelling, warmth, stiffness and loss of motion. JIA can last for months or years and its causes are still unknown (“Juvenile Idiopathic Arthritis (JIA)”). JIA is an invisible disability, meaning that it is not able to be seen by the naked eye. This begs the question: How does Maddy’s invisible disability affect her daily life? Although individuals with “invisible” disabilities (those that are not always, or ever, apparent to others) may not receive as much overt or explicit social stigma as those with more apparent disabilities, they are still exposed to forms of rejection, ableism, and discrimination; in fact, they may even have more trouble accessing support services than their visibly disabled counterparts due to being expected to prove their disability (Davis, 2005).
It may come as a surprise to many of Maddy’s peers that she is considered disabled, as it does not seem to have stopped her from accomplishing many things. However, JIA still affects her day to day life in many different ways. Due to arthritis in her hands, Maddy cannot write more than half a page before she cramps up and the pain in her joints prevents her from continuing. Luckily ARS (Accessibility Resource Services) here at Chapel Hill helps Maddy receive necessary accommodations for her disability. For example, she is able to get extra time for examinations (writing and typing for long periods is very difficult for her) and her absences are excused whenever her arthritis is particularly bad. Along with this, she has to avoid foods with gluten as it may cause a “flare up” that could result in her having to leave school and recover at home. Each week Maddy must inject a dose of the immunosuppressant Humira into her leg to treat her JIA. She explains that this process can be extremely painful as well: “Sometimes I’ll literally be screaming during the shot”. The only treatment for JIA is immunosuppressants, meaning that Maddy is immunocompromised due to her medication. One can only imagine what being immunocompromised in a worldwide pandemic must be like. Each day Maddy faces the threat of COVID-19 and what the possibility of getting sick would mean for her. Although she is vaccinated, she still faces a much greater risk than the average person. With a suppressed immune system her body is unable to efficiently fight off illnesses, so not only does COVID-19 pose a threat, but also sicknesses like a common cold could knock her out for weeks.
JIA is not only physically taxing on her body, it is mentally taxing too. “When you don’t really know what’s going on with your body, and you’re in so much pain it’s really depressing, to be in a lot of pain and not be able to do anything about it…it has definitely affected my mentally health quite a lot”. This is what Maddy expressed to me when discussing her mental health struggles. She mentioned a downward spiral in her mental health at the beginning of the COVID-19 pandemic. She was completely isolated from everyone, not in her immediate household for much longer than other teens her age as directed by her physicians. Isolation is hard for everyone and Maddy was no exception.
Despite her struggles Maddy stays positive. It is important to remember that not all disabilities can be seen. Many of the people that you interact with on a daily basis, maybe friends or even family, could be dealing with an undiagnosed or invisible disability. Sometimes even I forget that Maddy struggles with JIA and I have been her close friend for years. Be compassionate and understanding towards others in your life, you never know what they may be struggling with. Right now Maddy is in medical remission; meaning that her medication is working and there is hope that in the future she can one day live medication free. Overall, she has done more than the average person who is not living with the hardships that a disability brings. She is two years ahead in her studies and enjoying a thriving social life. Maddy is making plans to attend graduate school for biology all whilst navigating the challenges that JIA throws her way.
References:
Bagshaw, Madeline. Personal Interview. Conducted by Paige Flanigon. 16 April 2022.
Davis, N. A. (2005). Invisible disability. Ethics, 116, 153–213. doi:10.1086/453151
“Juvenile Idiopathic Arthritis (JIA).” National Institute of Arthritis and Musculoskeletal and Skin Diseases, U.S. Department of Health and Human Services, 8 Apr. 2022, https://www.niams.nih.gov/health-topics/juvenile-arthritis.
Featured Image: Dazely, Peter. “X-ray of Hands”. Getty Images, 2020, https://www.prevention.com/health/a20500415/reasons-your-joints-hurt/