An estimated 2 million adolescents (ages 10-18) carry the diagnosis of a chronic illness that affects their day-to-day lives. (Compas 3) Throughout the medical industry, there exists a discrepancy about what defines a chronic illness. The CDC, Centers for Medicaid and Medicare, and the Department of Health and Human Services all have different definitions for what diagnoses counts as chronic illnesses. (Bernell and Howard 1) For the sake of this website, I will focus on the U.S. National Library of Medicine’s definition – “a long-term health condition that may not have a cure.” Someone diagnosed with a chronic illness could suffer from cancer, asthma, cystic fibrosis, arthritis, or diabetes. Many other diseases fit under this umbrella, and people suffering from chronic illness can have a combination of diseases which can add to their stress. Being diagnosed with a chronic illness has been referred to as “an emotional rollercoaster” by psychologists, as well as research that suggests that people who have high-stress lifestyles or have been diagnosed with depression tend to experience more distress with a chronic illness diagnosis. (Maunsell 120)
Currently, scientific research focused on the medical side of chronic illnesses consists of the majority of context available. Experimental medicines, surgeries, and possible cures have become the subject of extensive research and funding, and for good reason. Improving quality of life and health for people with chronic illnesses is important, but I believe more research and discussion relating to the psychological side of a chronic illness diagnosis would be beneficial to both society and individuals. Some chronic illnesses receive more coverage on this front than others – cancer being a shining example. The Journal of the American Medical Association published an analysis of medical research funding in the United States. In 2012, cancer accounted for $5.6 billion in funding with 13.4 million people living who have had cancer, past or present. In comparison, diabetes received $1.1 billion in funding with over 29 million people living with diabetes and many more at risk. (Moses 174) While the amount of research money given to each of the different chronic illnesses does not directly relate to representation for these illnesses, it can show what diseases we prioritize and how society views suffers of chronic illness different depending on their diagnosis.
People diagnosed with diabetes seem to face the most stigma. Research has shown that 81% of people with diabetes feel that they experience stigmatization because of a perceived character flaw or a failure of personal responsibility. This stigma can affect their emotional state, social lives, and ability to manage their diabetes. (Liu 30) Another example of a stigmatized chronic illness is HIV and AIDS. Research of adolescents and young adults living in urban cities with HIV has revealed that stigma can cause them to skip doses of life-saving medication. Fifty percent of people surveyed reported that they had skipped doses out of fear of friends or family discovering they have HIV. (Roa 28) Stigma that causes so much damage that it causes physical harm (missing medications) raises several concerns. I believe that by increasing the amount of positive and respectful representations of these chronic illnesses, we can influence and reduce the stigmatization that people who have these illnesses in the future.
The process of developing from adolescence to adulthood already causes a significant amount of stress. Adolescents with chronic illness struggle to cope with their diagnosis, receive a full education, face stigma in society, and find positive and realistic representations of their illness in the media around them in addition to the regular stresses of development. Despite the general consensus that representation has a significant positive impact on developing minds, very little young adult literature exists that features chronically ill characters. This site seeks to inform visitors of the value of representation for young adults with chronic illness and inspire the creation of more stories with chronically ill characters.