For years I’ve been told that I am “still young,” that can still accomplish great things, be involved in sports, and complete simple tasks. While at the age of seventeen I may still be young, everything about me feels older. I wake up with stiffness that locks me inside of my body that makes it impossible to function properly until my joints are ready to move again. When it’s a particularly cold morning, my hands burn and swell up so much that I can barely hold a pencil for long enough to write more than a few illegible sentences. On the best of days, this a minor annoyance, no more of a nuisance than a sore muscle. On the worst of days, my body becomes a prison that holds me back from doing all that I should be able to do. But I had to get used to it.
I was diagnosed with juvenile idiopathic arthritis (also known as JIA) when I was in sixth grade, but I started experiencing symptoms back when I was in kindergarten. My parents knew something was wrong when their lively five-year-old started complaining about pain in her neck and back. At the time, my doctor wasn’t able to pinpoint the problem and could only give a school note requesting that I sat on a chair instead of the worn playtime rug the rest of kindergarten class relaxed on during “sharing time.” JIA is abnormal and barely understood, so the six years and variety of office visits that it took for me to get a diagnosis are understandable. According to Carol Eustice and Dr. Grant Hughes from VeryWell Health, there is no known cure or cause for chronic forms of arthritis, so I’ve had to accept that JIA is a permanent part of me and my identity. However, unless I outrightly said something, nobody would get the impression that I have a debilitating condition that affects every aspect of my lifestyle and makes me feel isolated from the rest of my age group.
JIA is one of the several types of impairments that can be classified as a hidden disability. According to the Invisible Disabilities Association, an invisible disease is “is a physical, mental or neurological condition that limits a person’s movements, senses, or activities that is invisible to the onlooker.” In addition to the 300,000 kids and teens the Arthritis Foundation has identified as having JIA, millions of teens struggle with illnesses such as lupus, fibromyalgia, multiple sclerosis, diabetes, and mental infirmities. Kids suffer silently through these real, lurking situations without the support of their friends and family members.
Over and over, I’ve come to the realization that the hardest part of a chronic illness isn’t always the disease itself, but the stigmas that follow. In her essay “The Spoon Theory,” Christine Miserandino describes that a person with a chronic illness is having to “consciously think about things the rest of the world doesn’t have to.” On a bad day, I have to plan where I want to spend what little energy I have. Sometimes, I run out of energy before I can accomplish all that I need to do. People label me as lazy or irresponsible. On the other hand, if I explain my situation, I become defined by the stigmas surrounding my disease instead of the person I am.
The conversation around stigmas has gained momentum in the past few years as several community members have put an effort towards dispelling the influence of stigmas in politics and businesses. But, the idea that there are different types of stigma is often left out of the overall discussion. The book Social Psychological Foundations of Clinical Psychology from the Illinois Institute of Technology states that there are two types of stigma: public and self. Public stigmas are most talked about as they lead to prejudice and discrimination, both of which directly affect the functioning of societies. On the other hand, self-stigmas are public stigmas that have become internalized. When combined with label avoidance, self-stigma affects a person’s actions towards themselves and can prevent them from reaching out for the help that they need.
I try to avoid being labeled as disabled because of the misconceptions that I become characterized by. There have been numerous times I’ve had to stay home from the required youth group meetings because I was too exhausted to be able to fully participate. Some days, simple activities become a chore. Yet, I dislike having to explain that I have JIA because I don’t want to seem like I need to be looked down on, treated differently, or be told that I haven’t done enough to take care of my health and that it is my own fault I have my disease. There’s a constant and building pressure for those with invisible diseases to keep their conditions hidden, and this only contributes to the misinformation that causes stigmas in the first place. This creates a positive feedback loop between the public and the individual that is growing harder and harder to break. Currently, we cultivate a culture that isolates and forces people to pretend to be what they “need” to be. But it doesn’t have to be this way. There are choices everybody can make to end this cycle.
To start making a more inclusive community, we can simply start by paying attention to the people around us, offering respect, and listening without judgment. Stigmas have been at the root of several social and economic issues but they can be battled if everybody is willing to offer understanding and open minds. We can combat unintentional stereotypes by taking the step to learn about different lifestyles and understand our opinions towards different communities. We can start seeing people as fellow human beings, be willing to give them the benefit of the doubt, and work towards putting an end to the divisions among ourselves. Suffering through an invisible disability is an isolating experience even without the added complications from stigmas, but if everybody puts in an effort, it’s possible to let even the most burdened person feel liberated.