"Veronica” is a senior at Saint Louis University, majoring in health sciences.  After graduating, she will go on to pursue PA (physician assistant) school. Not only is  she an exemplary student, known for her academic excellence and admirable drive, but  she is also deeply passionate about improving the American health care system. Her  experience living with type one diabetes (T1D) and the daily challenges of navigating  an autoimmune disease within the U.S. health care system has only ignited her  commitment to advocating for more equitable and accessible care. As a close friend of  mine who shares my interest in health care, we often spend time engaging in thought provoking conversations about ethical dilemmas and the shortcomings of our current  health system. 

     During our interview, we engaged in several questions regarding T1D, whether  she considers this disease to be disabling, and how her identity has intersected with  health care. To dissect her response, it is essential to differentiate between the social and medical models of disability. The social model emphasizes how external barriers, such  as societal structures, attitudes, and policies, create disabling conditions for individuals,  whereas the medical model views disability as a disease that must be cured. When asked  if she identified herself as disabled, Veronica responded that while she would not use  that label, she believes that the way in which the world operates and the way people  have viewed her disease has caused her self-perception to reflect this idea of disability.  She articulates, “So, although I don't identify as disabled, I still feel at times that I am  embodying a disabled identity because of how the world is structured, especially in  America.” 

     To elaborate on the concept of the social model of disability, one major barrier in  the United States is the failure to treat healthcare as a basic right. Issues of affordability  and accessibility exacerbate the experience of disability, as individuals must navigate not only their conditions but also systemic inequities. Veronica highlighted this in  relation to her own experience with T1D, explaining that her dependence on insulin  makes her constantly aware of healthcare costs. By contrast, she pointed out that in  many other countries insulin is provided free of charge, meaning patients are spared the  financial stress that she faces daily. Without these systemic burdens, individuals abroad  may be less likely to experience their condition as disabling, since it does not force  them into constant negotiation with cost and access. 

     According to the Centers for Disease Control and Prevention (CDC, 2024), over  70 million Americans are disabled, which is approximately one in four adults. As we  have established, navigating the health care system with disability can be incredibly  costly; the high costs of care compound existing health disparities. This 2024 CDC data  showed that adults with disabilities report additional health conditions such as  depression and heart disease, suggesting that the barriers they face in health care access  have cascading effects on overall well-being. Research further demonstrates a  multidirectional relationship between poverty and disability: not only do disabled  individuals have to invest 3 to 7 times more into their health, but they also are likely to  earn less. (Kennedy et al.,1) This cycle deepens inequities and highlights how systemic  shortcomings intensify the lived reality of disability in America. 

     Fortifying this idea, Veronica explained that even her choice of college major  was shaped by not only her interests but also by financial consideration. While her  primary concern was what career was most fulfilling, she also needed to think about  what career was going to be lucrative enough to offset the high cost of her medications,  even with insurance. This concern is well-founded, as the total estimated cost of  diabetes in the U.S. was $327 billion in 2017, with projections rising above $600 billion  (Saulsberry and Peek, 2019). Recognizing this burden, health systems are experimenting with new payment models that not only cover medical treatment but also  support patients’ social needs to reduce costs and improve outcomes. As health care  evolves, we can only hope the financial strains of people with T1D may be alleviated.  Integrating medical care with social services like food assistance or housing stability,  like community navigation programs, is an important consideration if we want to  lighten the cost and burden of diabetes care (Saulsberry & Peek, 2019). 

     This financial burden is just one example of the ongoing mental and emotional  calculations Veronica must make in her daily life. Although she resists labeling her  condition as a disability, she acknowledged that the constant need to plan and worry  about access to medication, long-term health, and future self-care feels disabling in  practice. These considerations are not momentary but persistent, shaping her decisions  and reinforcing how social structures, rather than the condition itself, impose  limitations.  

      Given the global prevalence of diabetes, much attention has been devoted to how  it is treated and prevented. As Veronica explained, living with T1D means being  “basically a manual pancreas. I have to look at everything I eat, and even when I’m not  eating, there are 40 other factors beyond food that can affect your blood sugar.” While  she has been fortunate to manage her condition effectively, she noted the potentially  severe consequences of impaired treatment. Poorly controlled blood sugar levels can  result in diabetic ketoacidosis (DKA), where dangerously high glucose levels cause  blood acidity that damages the body. Conversely, when blood sugar drops too low, the  brain lacks sufficient glucose to function, leading to seizures, loss of consciousness,  coma, or even death. Although Veronica has not had to worry about this, people who  struggle with healthcare accessibility and affordability are far more vulnerable. Missing medication or lacking access to adequate nutrition makes people more susceptible to  these life-threatening outcomes. 

     These barriers illustrate how, even though diabetes is not inherently disabling, it  often becomes disabling because of the social limitations placed on accessibility. This  is echoed in Highsmith’s study, which reported that although nearly 8,000 first-year  students with T1D enroll in U.S. colleges annually, universities often lack systems to  identify and support them, highlighting how structural shortcomings exacerbate the  disabling experience (Highsmith, 2025, p. 1). Veronica describes T1D as an “invisible  disability.” She explains, “A lot of people don’t even know I have [diabetes] until they  look at my arm and ask, “What’s that?'” Or they hear my phone beeping.” The  challenges of managing an “invisible disability” are compounded by the lack of public  understanding. Veronica expressed frustration at having to constantly explain that,  despite appearances, diabetes requires her ongoing vigilance. Her reflection highlights  how invisibility adds another layer to the disability experience: the need to justify or  make visible a condition that others cannot easily perceive. 

     Veronica’s reflections reminded me of Christine Miserandino’s essay “The  Spoon Theory”, which does an excellent job of explaining the lived reality of managing  chronic illness. In the case of Miserandino, she describes her experience navigating  Lupus in college. The article highlights a pivotal difference between understanding an  illness physically and understanding the personal experience of carrying an illness.  Miserandino was able to share with her roommate the difference between having an  illness and being “healthy,” as having to always consider and make choices consciously.  This privilege and luxury of navigating life without carrying on this weight is especially  taken for granted by “healthy” individuals.

     Carrying an invisible disability can also be severely limiting, even when it does  not align neatly with traditional definitions of disability. For instance, Kennedy et al.  (2024, p. 2) define disability as involving activity limitations (such as needing  assistance with personal care or household chores) or functional limitations (such as  difficulty walking or remembering). By this definition, diabetes may not appear  disabling because it lacks the visible or physical restrictions often associated with  disability. Yet this narrow framing risks excluding the persistent concerns faced by  individuals with conditions like diabetes, whose hardships within the health care system  are frequently overlooked in advocacy and policy discussions. Importantly, Kennedy et  al. do recognize diabetes as a limitation indicator, reporting that 2.1 million working-age  adults (ages 18–64) in the U.S. live with diabetes as a disability (p. 2). This  acknowledgement highlights the need to expand our understanding of disability to  include invisible and systemic burdens, not just visible impairments. 

     This recognition is pivotal when analyzing disparities in insurance coverage,  considering how heavily the livelihood of diabetics relies on health services. Even after  important reforms in the private insurance market like the implementation of the  Affordable Care Act, increasing the number of disabled adults who had access to health  insurance, individuals with diabetes, along with those with other disabilities, remained  much more likely to report problems with access and affordability (Kennedy et al.,  2024, p.6). These persistent gaps demonstrate how policy reforms, while impactful,  have not fully addressed the structural barriers that shape health inequities for disabled  populations. 

     When I asked Veronica to describe her experience navigating diabetes from the  beginning, she reflected on her diagnosis and the role of the health care system in both  supporting and limiting her care. Veronica’s diabetes was first caught by her pediatrician, who suspected it based on her symptoms. She was sent to Children’s  Mercy, a hospital in Kansas City where she is from; there, they ran tests and confirmed  her diabetes diagnosis. The following steps required her to go to a special class and sit  through an informative presentation; here she learned how to administer insulin, the  various injection sites, which foods to prioritize or avoid, how different foods affect  your blood sugar, as well as how activity can affect your blood sugar. This initial  education made clear that diabetes management would not only shape the next week or  month of her life, but also the decades ahead. 

     Although Veronica expresses extreme gratitude for having received that  education, she ventured to guess that it is not as easily accessible to everyone. She was  able to attend classes only because her family had a car to reach the hospital, and her  parents could take time off work, privileges many families lack. The classes themselves  were limited in scheduling, and beyond that, much of her learning came from books her  parents purchased independently. As she explained, diabetes education tends to be  “front heavy”: patients are offered one or two initial sessions that cover the basics of  insulin administration, symptoms, and potential complications, but the responsibility of  continued learning falls largely on the individual. Research confirms Veronica’s concern  about limited diabetes education and ongoing support. Highsmith found that many  students with T1D transition to college unprepared; often lacking supplies, medical  records, or knowledge of available campus resources, which places them at heightened  risk during this vulnerable period (Highsmith, 2025, p. 2). Ultimately, it is up to you to  educate yourself. 

     The burden, however, should not rest on patients to rearrange their schedules or  independently seek out resources to manage a lifelong condition. Veronica emphasized  that diabetes education must be more accessible, as she articulated, “It starts with being empathetic and recognizing that nobody asks to get an autoimmune disease, let alone  any disease.” Acknowledging this is now something the individual will have to deal  with the rest of their lives, the least we can do to honor their dignity is by helping ease  this difficult transition by the provision of accessible and equitable care. This means that  there needs to be multiple options. We must consider how to pilot for families that can’t  get off work, sending them resources, sending them books, physical or digital, which  they can access from their homes, having platforms available where patients can readily  ask questions, or deploying community health workers to check in regularly. We need to  have these options available, because again, no one asks for these things to happen to  them. As Veronica remarks, “If we had a healthcare system rooted in empathy, we  would recognize this.” Highsmith proposes several reforms that align with this vision,  including early reception of health records, holistic care plans, peer-led support groups,  and closer collaboration between pediatric and college health providers. These models  echo Veronica’s call for a health system rooted in empathy, one that acknowledges  lifelong challenges and actively works to reduce unnecessary burdens (Highsmith,  2025, pp. 10–12). 

     Beyond education, insurance is another grave issue. Although Veronica has been  fortunate to have strong coverage through her father’s government job, she still spends  thousands of dollars each year on the medication she needs to survive. Veronica  expressed concern for people without insurance, stating that the cost can be devastating,  ranging anywhere from five to upwards of fifteen thousand dollars annually, depending  on the medication brands required. It is important to recognize the absurdity of these  figures for the sake of individuals to stay alive; these things need to be more accessible.  Veronica eloquently articulated, “We need to value human life over profit. We need to  value connection. We need to value dignity. We need to value health. I understand people wanting to make a profit, but I also don't understand how you could sleep at  night knowing that people are dying because you wanted to be a little bit richer. In my  perfect world, it is as simple as increasing accessibility and affordability, so that nobody  ever must worry about missing a medication.” At the very least, no one should have to  choose between paying for rent or medication, or between funding a child’s education  and covering the costs of survival.