ABSTRACT
Nearly 3 decades after my type 1 diabetes diagnosis, I wrote this essay to document my journey. Through childhood and teen years where I experienced emotional abuse in clinic and felt the deepest of fears. Then in college, when I realized my voice mattered and I could elevate the voices of others with diabetes. During grad school, I began meeting with legislators and understanding how health policy works. I am now a health psychologist focused on improving health equity for people with diabetes and disabilities. Importantly, my research findings highlight how the U.S. medical system is not equipped to support people with diabetes. In this essay I also highlight key people in the diabetes and disability community who have served as lighthouses on my journey and continue to shine light across my path.
Diabetes has a way of sneaking up on you. Diabetes can make you feel alone – like you are the only person in the world that has it. I know this from personal experience. I can count on one hand how many memories I have before type 1 diabetes became a focal point of my life. I was diagnosed at 7 years old with no family history and as I often lament, before the Diabetes Online Community began. In this essay, I offer insights into my story of living with type 1 diabetes, I share the explicit blaming and shaming I have experienced and how I have mobilized for accessible and affordable care for myself and others who live with diabetes. Importantly, type 1 diabetes is an autoimmune condition where insulin producing beta cells are attacked by the immune system – preventing glucose uptake (Haller et al., Citation2005). In the U.S., 1.45 million people have type 1 diabetes. Although originally viewed as a “juvenile” and pediatrics only disease, you can be diagnosed with type 1 diabetes at any age.
Importantly, my symptoms before diagnosis were textbook: excessive thirst, frequent urination, and weight loss. I can remember chugging fluids like my life depended on it. I would get up in the middle of the night and drink an entire 2 liter of pop, run to the bathroom, and then go back to bed. Thankfully, my mom caught the signs and likely saved my life. My mom told my pediatrician that she was convinced that I had diabetes and that I needed to be tested for it immediately. He told her she had nothing to worry about because I did not have it. The urinalysis conducted that day led to a week-long hospital stay and confirmed my mom’s fears.
Living with diabetes
My diagnosis story may sound like the healthcare dark ages, but it was in 1995. The medical trauma that occurred during the week that I spent in the hospital was so unnecessary. During my hospital stay, I was restrained by hospital staff during insulin injections. My autonomy was stripped from me, and I was confused by my new reality. I was woken up frequently during the night for painful finger sticks. There was little compassion and empathy in my hospital room, and I distinctly remember a lack of communication. We practiced injections on fruits and my mom graciously allowed me to practice saline injections on her arm. She only recently let me know how much they hurt (which makes sense because can you imagine letting a 7-year-old give you a shot?).
Like many who get diagnosed with a chronic disease as a child, I had to grow up quickly. I did not know anyone locally who had type 1 diabetes at the beginning of my journey, and I spent significant time educating others on what diabetes is and what foods I was “allowed” to eat. At the beginning, I was prescribed a strict eating schedule with specific types of food and a sliding scale of insulin dosing for every meal. What a nightmare for a hungry growing kid. I grew up on my great grandparents’ farm and we (my parents and I) traveled over 70 miles one way to get pediatric diabetes care. My care and treatment were covered under what was then called the Bureau for Children with Medical Handicaps. This coverage was a relief for my parents who made too much money to be covered by Medicaid yet made too little to afford my medications. I spent a lot of my childhood in clinic, watching political commentary and local weather in waiting rooms.
As a kid, because of taking over as my own pancreas, I had an uncanny focus on politics as I knew that the governor could cut funding for the state program that paid for my insulin, my insulin pump, and all my medical costs (Oliver, Citation2006). He openly stated he wanted to cut funding for the program that provided my medical supplies and provided care for other disabled kids like me and I took that personally. Growing up poor with diabetes put tremendous pressure on me and my family. The emotional weight of it is something that never leaves you. I held my breath during those gubernatorial elections and poured over the news. I still hold my breath during state and federal elections when chronic disease health policy is at stake. Unfortunately, that is common as of late. These experiences led me to focus on promoting the voice of people with diabetes and improving health policy in my career. This is why I meet with legislators and their staff as much as possible to discuss diabetes bills to cut costs and promote quality of life. On March 26th of 2024, I joined my fellow advocates and held a press conference at the Ohio Statehouse to demand a lower cost of insulin. In May of 2024, I joined Prevent Blindness and 100 advocates on Capitol Hill to discuss vision loss healthcare policy with legislators and their staffers.
Blaming and shaming
Another part of living with diabetes is the stigma, particularly the ingrained ableism. Society says that we must persevere, and while growing up, I wanted people to think that I made diabetes look easy. There is a social phenomenon called inspiration porn – this occurs when disabled people are perceived as motivating and uplifting by abled bodied people. Disabled people can then be viewed as a “hero” who has “overcome” barriers. This is opposite of the other side of the coin where disabled people may be viewed by society as the “victim” or the “villain.” There is a common social phenomenon in type 1 diabetes where we expect people to be “warriors” during their diabetes journey. I have never identified with that inspirational journey, yet I was expected to maintain that façade when in public and in clinic.
The truth is, I was a disabled kid who was very TIRED. In fact, I remain very tired. The exhaustion that comes with chronic disease is something that is difficult to describe but I believe Spoon Theory sums up the phenomenon very well (Miserandino, Citation2003). The basic idea of Spoon Theory is that each activity requires a certain number of spoons, representing units of energy. People with chronic illnesses have a limited number of spoons each day, and they must carefully budget and prioritize how they use them. Once their spoons are depleted, they may not have the energy to complete the tasks or activities they had planned. It has become a widely recognized and used tool for communication and understanding in the chronic disease community. Spoon Theory made me realize that I was spending all my energy as a kid on diabetes. All of it. I had nothing left to give.
Before the innovation age of continuous glucose monitors, people with diabetes were expected to keep paper logbooks of our blood sugars and present it like a report card at appointments. As clinicians were reviewing the logbook, people with diabetes were expected to remember what we had eaten weeks ago that led to a high blood sugar after dinner. It was nerve-wracking and I would have anxiety stomach aches on the long drive to my pediatric endocrinologist’s office. I would spend time filling the logbook out on the drive up to the clinic and fabricating a few numbers here and there. I often left the office in tears and sometimes even sobbing.
My pediatric endocrinologist’s office threatened their patients. If you began to develop lipohypertrophy (hard pockets of skin where scar tissue develops due to insulin injections), they would stamp you with a stop sign stamp with bright red ink. I was frequently threatened to be stamped and absolutely terrified. In my medical experiences, I have been abused, I have been shamed, and my life has been in danger. In every appointment with my pediatric endocrinologist, I was shown my growth chart and told that I weighed too much and that I needed to grow taller. Which was super helpful to hear and see when I was a developing child trying to navigate my body image. My body was on display in ways that still make me shudder and make me super protective of children I meet with diabetes.
One way to deal with diabetes trauma is seeking others who have experienced exactly what you have. Social support is key in diabetes management and sometimes the support comes from surprising places. As a young teen, I stumbled upon a blog that changed my life. Kerri Sparling’s blog “Six Until Me” detailed her life with type 1 diabetes (https://sixuntilme.com/) and the literal highs and lows she experienced. Kerri is a writer, a mom, a wife, and published author. This supreme creative has the same disease as me and was diagnosed around the same age as I was. Now that I have read Alice Wong’s (an incredible disability activist) work, I understand my thoughts on Kerri even more (Wong, Citation2020). Kerri is the disabled oracle that I desperately needed as a kiddo. Kerri gave me hope then and she gives me hope now. When I was diagnosed with retinopathy in 2018, I knew I wasn’t alone because Kerri had intricately detailed her eye disease journey on her blog. Her frank thoughts on diabetes and complications led me to not be fearful but, instead, hopeful. Kerri’s work helped me take some of the pressure off myself and for that, I am forever grateful.
Diabetes is unique, in that way, with complications often viewed as a result of the patient not working hard enough when in fact, they are the result of diabetes. – Kerri Sparling
A key part of diabetes is communication. You need to be in close contact with your diabetes clinic, the companies that make your diabetes technology, and your insurance company. When you get diagnosed, no one tells you about how hard you are going to have to fight to get your prescriptions. I spend a significant amount of time on the phone about diabetes – I am exceptional at small talk – even for a self-proclaimed introvert. Spending long lengths of time on the phone with medical companies means you find out about their kids’ Halloween costumes, and you can even get restaurant recommendations. Communication can also have a dark side. I learned very early about diabetes stigma as I pushed to get what felt like the entire world to understand the medical mechanisms at play across all types of diabetes. There’s so much blame and shame around diabetes (Schabert et al., Citation2013). As an adult with diabetes, I’ve experienced a sad hush that goes across the exam room when I state that I have type 1 diabetes. Clinicians express sorrow for me. Which leads me to think … “should I feel bad for me too?”
Despite diabetes being a leading cause of death in this country, it has become a popular lazy Hollywood joke. Have you ever had someone laugh in your face and make jokes about the disease that will likely kill you? These jokes are also not few and far between. When Tim Burton’s Wednesday series premiered on Netflix, it promoted diabetes stigma. Wednesday is volunteering at a local business and is required to sell fudge. She calls the fudge “a box of diabetes.” Although many think this is just a joke, it is important to realize that jokes promote diabetes stigma which leads to physical and mental harm for people with diabetes (Buckley, Citation2022). Diabetes stigma means misinformation and is incredibly dangerous. One unlikely hero in this diabetes stigma popular media discourse emerged in an episode of Bob’s Burgers where Bob is stating he will name a burger of the day a diabetes joke and a coworker says it is very poor taste to say that because diabetes is a terrible disease. The delivery is brilliant and a beautiful supporting statement that takes a stand against this type of discrimination.
We should not make disabled lives subject to debate. – Alice Wong
I knew very early on that I wanted to work in diabetes. I have always had a passion for helping others and I wanted others to get the care and respect they deserve. I want people with diabetes and their families to feel taken care of because I think back to little me in my pediatric endocrinologist’s clinic, and I wish I could help that little me who needed better care and a team that understood her. The harm I experienced there can never be undone. Overall, people with diabetes need better care. We need connection. We need support. I carry medical trauma with me everywhere I go. I have been labeled as non-compliant and uncontrolled – words that when applied to people with diabetes can make them feel devalued and hinder their motivation and self-efficacy (Holmes-Truscott et al., Citation2020). Labels are damning. Language guidelines aim to fix these issues, but progress takes time (Dickinson et al., Citation2017; Speight et al., Citation2012).
Healthcare professionals using person first language, strengths-based language, and empathic language are key (Dickinson, Citation2018). Recently, I published two papers on clinic competencies for diabetes technology (Hughes et al., Citation2022; Patil et al., Citation2022). I’m advocating for myself and my peers in the work I do but being a diabetes researcher means I am confronted with diabetes every waking moment of every single day. I get notifications on my phone when my blood sugar is out of my target range. I’m collaborating to improve health policy regarding diabetes technology. I’m often changing my insulin pump site and continuous glucose monitor sensor in meetings. Diabetes is EVERYWHERE in my life, and it doesn’t take a vacation.
In my research, I hear participants say that they are fully supported by their family, that their diagnosis made them stronger, that they were near a hospital that set them up for success. For others, it’s the opposite, they may have low health literacy, a less engaged family, experience health misinformation, and less support overall. I have published findings about people with diabetes who struggle to make sense of the broken healthcare system and get their diabetes supplies on time due to insurance coverage barriers. I have had people cry and talk about missed opportunities that impact careers, daily living, travel, and family life. Parents and guardians have told me how concerned they are for their children, so much so that they set multiple alarms every night to check in on them to make sure that they are okay. I have examined how emotions like shame and guilt are common for those who experience severe low blood glucose. I have learned that being blind and getting quality care for your diabetes is extremely difficult and there are many barriers to even getting a glucose meter that is accessible. Not surprisingly, mental health is a major component in diabetes and therefore, in my research, and is exacerbated by diabetes distress and diabetes stigma.
Mobilizing for accessible and affordable care
A few years ago, I had an “aha moment” with one of my best friends. I was teaching her to administer glucagon – the infamous red kit with tiny instructions and an unnerving failure rate. As a child, my sweet grandmother had failed to mix the kit correctly and made a bad situation much worse. This left me with fear and passion for teaching others about glucagon. As we went through the instructions, we both realized that it was completely inaccessible for people who are blind or who have low vision. A research collaboration was born, and we are proud of the accessibility strides we are making. Importantly, no matter what changes are made, no matter how far we go, diabetes care has to become more accessible and more affordable. We will never accomplish key clinical goals if we don’t have health equity on the table and we aren’t regulating the cost of insulin and diabetes supplies as a whole. Since my diagnosis in 1995, the cost of insulin – the literal same insulin that I used at diagnosis, has risen over 1200% (Rajkumar, Citation2020). We need #insulin4all and we need it now (for resources see t1international.com). We need state and federal policies in place that protect those who are marginalized.
Insulin does not belong to me, it belongs to the world. – Dr. Frederick Banting (one of the founders of insulin in 1921)
What’s next for diabetes research and advocacy? Looking forward, I want more people with diabetes and their families to be included in research and policy developments. Specifically, we have a lot of work to do to make sure that marginalized communities are included. We need people who are often not represented to have a clear voice and influence in diabetes products that they are using. There are many opportunities for the diabetes community to learn from the disability online community and other social movements. Overall, the diabetes community is mobilizing to make society more informed, less stigmatizing, and more accessible for future generations. There is power in numbers. Currently there are several diabetes social movements about destigmatizing diabetes, getting emergency medicines to people in need, and providing better representation of people of color who have diabetes. I’m proud to be part of the change.
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References
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