How A Type 1 Diabetes Diagnosis Helped One Woman Find Herself
The individual interviewed for this illness narrative has given express permission for this narrative to be published on our course website publicly with their full name attached. These individuals understand that they can alter these permissions at any time.
The subject of my interview is nineteen-year-old Valeria Orozco, a current sociology student at the University of North Carolina at Chapel Hill. In the past, she worked as a communication and mentorship intern for the Youth Leadership Foundation and currently works in the Bonner Leaders Program at the Campus Y. She currently resides in Chapel Hill, North Carolina, and Greensboro, North Carolina, but she previously resided in Northwest DC District, District of Columbia; Houston, Texas; Stockholm, Sweden; Medellin and Rionegro, Colombia. She lives with type 1 diabetes. The goal of our interview was to investigate the question: How do misconceptions about diabetes frame the way people with type one diabetes (T1D) feel about themselves and how they receive healthcare?
Diabetes is a chronic health condition that impacts how the body converts food into energy (CDC). Food is broken down into glucose and released into the blood. When blood sugar increases, the pancreas releases insulin. Insulin lets blood sugar into the cells to be used as energy (CDC). With diabetes, the body does not make enough insulin or cannot use insulin as well as those who do not have diabetes. Without enough insulin, too much blood sugar stays in the system and can lead to serious health problems. Type 1 diabetes is caused by an autoimmune reaction that stops the body from making insulin as well as other genetic and environmental factors (CDC). Type 1 diabetes often is diagnosed in childhood. Latinos have a higher prevalence of diabetes and complications from diabetes (Mainous).
There are several stigmas that I, myself, have noticed throughout my life while talking to others about T1D or meeting people with T1D. I have seen my peers with diabetes being excluded from activities, specifically in grade school when they were too young to understand why they were being treated differently. I have seen my classmates being fat-shamed, criticized when they eat sweets or desserts or when they publicly inject themselves with insulin or read their sugar levels. Society often assumes that people with diabetes can never eat sugar and that impacted how I viewed diabetes. Several misconceptions that I have often heard about diabetes are that it is the fault of the individual or that diet and eating habits caused someone to get diabetes. People often confuse T1D with type two diabetes (T2D). These misconceptions are harmful because they place blame onto people with diabetes and ignore the broader causes specifically of T2D with food insecurity and health disparities. T1D is heavily stigmatized. Many assume that T1D is caused by eating too much sugar as a child, but this is far from the truth. T1D is a genetic, autoimmune disorder.
I sat down with my best friend to hear her story. I knew that she had diabetes, but she had never told me about her experience in much detail. Valeria first experienced symptoms like those of T1D in the summer before her freshman year of high school in 2016. She was diagnosed with T1D on September 22, 2016, a month into her freshman year of high school. She had begun to lose a lot of weight and experienced fatigue. She thought that she had a thyroid problem. The doctors ran her glucose levels using a urine test which yielded alarming results. She was taken to a children’s hospital where doctors ran an A1C blood test. Her levels were extremely high, and she was diagnosed with Type 1 diabetes. An A1C test is a blood test that measures average blood sugar levels over three months. It is commonly used to diagnose diabetes and help the patient learn how to effectively manage diabetes. This diagnosis crushed Valeria. She was scared and confused because she “did not know what it meant at first and then after seeing how it affected my parents it hit me as my life was being stolen and I felt like a burden to my parents.” The fear and confusion of receiving this diagnosis and such a young age stuck with her.
Valeria has been treated differently and has been misunderstood by her peers and strangers since her diagnosis. Her peers in high school told her to “get better soon,” which is, of course, not what happens when someone is diagnosed with diabetes. Valeria also noted a stigma surrounding herself. She had to learn to be okay with being disabled and overcome the stigma that she holds around herself. She described how “tricky it is to define diabetes as a disability and not feeling very visible,” and feeling somewhat alienated from the term and the disabled community. Valeria described many of the misconceptions surrounding T1D including that people are “unaware of how to treat T1D and what insulin is supposed to do.” People also do not know what to do when something goes wrong in someone with T1D. The study by Mainous showed that “acculturation among diabetic Latinos to the general US culture is associated with the adoption of some less desirable dietary habits.” The quality of care for Latinos with diabetes is less than that of their white counterparts, especially with immigrants such as Valeria.
She is Catholic and her faith is very important to her. After her diagnosis, she was mad at her religion and her beliefs for not pulling through for her when she needed guidance. She adjusted and changed her behavior and became more thankful and accepting of how this is what she lives with and how she can be better to herself. Her religion has helped her through this difficult journey.
Valeria has received numerous insulin injections since her diagnosis but focused on two different types in the interview. The first is called basal insulin. These shots last for twenty-four hours and are meant to regulate insulin production in the body. These are taken in beween meals and before bedtime when the body is fasting. The second is called bolus insulin. Bolus insulin is injected when she is eating, right away, or throughout the day. It acts quickly and keeps blood glucose levels in check during meals. She wears an insulin pump which is the most convenient and manageable method for her. She changes the site and tubing every few days.
Controlling Type 2 Diabetes (T2D) is more about regulating a low-carbohydrate diet. Many survivors of T1D and T2D experiment with keto diets, which does not solve T1D, but can help manage T2D. T2D is caused by a buildup of insulin resistance and mainly affects people over the age of thirty. T2D can be curable, as people with T2D can be more health-conscious and make choices that make their diabetes more manageable. Those who live with T1D do not produce enough insulin, or their body does not use it efficiently. T1D is difficult to live with and treat because it typically develops in younger people. It can be hard to make sure that children who have T1D are doing everything that they are supposed to do and can understand the importance. Valeria defines T1D as a “genetic and child-onset autoimmune disorder that is completely different from what people understand it to be.” I could hear the emotion and frustration in her voice as she described the feeling of not feeling understood or supported. Valeria must make sure that she has enough insulin for everything that she has eaten. “It can be very dangerous to expect other people to take care of me, because most people do not know [how to help me],” She is very conscious of eating carbohydrates because the body turns these into sugar. When her sugar is high, her symptoms include irritability, blurry vision, extreme thirst, and hunger. When her sugar is low, she is tired, needs to lay down, has cold sweats, and is restless because she cannot sleep even though she is drowsy and fatigued. I could relate to grappling with a devastating diagnosis in one of the most transformative periods in my life, so I sympathized a lot with her retelling of her diagnosis. She eats a mainly low carbohydrate diet with a lot of fiber. This can be hard because high card foods are more accessible. Maintaining a regular exercise routine and making sure that she has enough insulin is necessary.
Every time she travels it gets more complicated regarding her diabetes and all the things that she needs to have with her such as syringes and pump sites. During her gap year, she recalls a time when she was living in Washington D.C. and realized that she did not have enough pump sites and could not go home to get more, so she ran out. Insurance could not cover the cost of the pump sites that she needed, so she had to pay three hundred dollars to buy emergency supplies. She describes it as frustrating that not a lot of older diabetics are alive anymore because insulin access is hard to access. She told me that she is a part of the older generation of type 1 diabetics that are alive, a harrowing realization.
Valeria and her parents had considered buying insulin from Colombia because it would be much cheaper than buying it in the US, “but that would be very illegal,” she told me with a laugh. It is frustrating that she cannot live without insulin, especially in the United States, but she must pay an absurd amount of money to afford it. On some occasions, she recalled not being able to eat as much or having to ration her insulin until insurance can pay for more. This has led to a “detrimental” relationship with her mental health and her body because of a lack of control. She does not have a choice as to whether she will eat or not, because she does not have her insulin and that can be frustrating.
T1D has affected her relationship with her body in a more positive manner now that she understands her illness better and that she has had it for a while. She has become more patient with herself and more frustrated with the system. She must be conscious of where she is and who she is surrounded by. In social situations, she needs to make sure that she has access to insulin. It is difficult to be in social outings with food. She does not eat pizza because of the amount of carbohydrates. She cannot eat certain foods because she does not want to use her insulin. Her outlook on life has made her more patient and delicate with herself. She recognizes that her body takes her place to place, and she cannot ask much more of it. However, T1D has ruined her relationship with certain foods, but she says that it is nothing that she is not willing to sacrifice for her health and her own wellbeing.
I could see Valeria’s growing confidence within herself and her story. Often smiling or laughing while we talked, I saw how she was able to grow as a woman and love herself, despite all that she has been through. More work must be done to destigmatize diabetes and the healthcare system must be made more affordable and accessible to people of all backgrounds living with diabetes. Valeria wishes people understood that having T1D is not her fault or anyone who has it. It should not be the responsibility of the patient to bear the burden of paying for insulin which is essential to their survival. She also wishes that she could be openly accepted into the disabled community. “Type 1 has so many implications for how it affects your body and how it affects your mental health.” She describes T1D as an invisible disability, which is why she feels alienated by the community. Valeria told me that she has found an amazing community within diabetic Latinos. “There are so many Latinos with diabetes and honestly the community that I have found of Latinos with diabetes is so caring and lively. Latino foods tend to be very high in carbohydrates, so finding other diabetics that also struggle with going to spend time with Latino family during holidays or big parties gives me the comfort in knowing that I am not alone and that I can be a safe person for any other diabetics in my community/family.” Her words are powerful and reveal so much about her strong character. She happily said that her new outlook on life has made her treat herself better. She started playing sports for fun and became more health-conscious. She now is on the UNC Women’s Rugby Team.
Mainous, Arch G., et al. “Acculturation and Healthy Lifestyle among Latinos with Diabetes.” Annals of Family Medicine, vol. 6, iss. 2, 1 Mar. 2008, www.annfammed.org/content/6/2/131.short.
Lin, Maria H., et al. “Race, Socioeconomic Status, and Treatment Center Are Associated with Insulin Pump Therapy in Youth in the First Year Following Diagnosis of Type 1 Diabetes.” Diabetes Technology & Therapeutics, vol. 15, iss 11, 1 Nov. 2013, http://doi.org/10.1089/dia.2013.0132.
Mayer-Davis, Elizabeth J., et al. “The Many Faces of Diabetes in American Youth: Type 1 and Type 2 Diabetes in Five Race and Ethnic Populations: The Search for Diabetes in Youth Study.” Diabetes Care, 1 Mar. 2009, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2647691/.
Orozco, Valeria. Interview. Conducted by Sophia Merine, 12 Nov. 2021.
“What Is Diabetes?” Centers for Disease Control and Prevention, 11 June 2020, www.cdc.gov/diabetes/basics/diabetes.html.
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