Type One Diabetes Illness Narrative
The interview subject of the following narrative has granted permission for this content to be shared as long as their identity is protected; all individuals referenced have been assigned pseudonyms. The interview subject’s pseudonym is “Jane”.
Jane grew up with her mom, dad, and brother in Raleigh North Carolina her whole life. Not too far from Chapel Hill where we both attend the University of North Carolina. She stated that “I had a great childhood, our parents were very encouraging and my brother and I worked very hard to get here” referring to our school. I met Jane before classes even started on preference round during our rush experience to join a sorority. We instantly clicked, bonding over the hot and humid climate and our lack of sleep. Ever since then, Jane and I have been great friends, now technically “sisters”. I have never been around such a light of a person, she is always smiling and giving the best advice. We are both applying to the nursing school next year and are constantly keeping each other in the loop on our progress, or lack thereof, in our stem classes and chat about our love for the nursing field. During one of those conversations, I noticed a continuous glucose monitoring system on Jane’s arm. I never thought anything of it. I knew what it was and that it meant that Jane must have type one diabetes, but didn’t want to ask questions. I didn’t know if Jane felt comfortable talking about it, which is why I was shocked to hear Jane agree to have an interview about her lived experiences with type one diabetes. She seemed extatic stating “I’d love to!”
I asked if we could hold the interview in a public place, I mentioned a bagel shop not too far from where we live. Jane agreed and seemed to look forward to this interview. She even insisted on her roommate and their friends visiting from North Carolina State University joining us for brunch and to talk. The casual environment and our familiarity with each other made the situation feel relaxed. I asked if Jane has ever had the chance to talk about her condition in such a way, she responded with no. I thought of how people with chronic conditions, specifically those that are unnoticeable such as type one diabetes, never have the chance to express their concerns and experiences with others. The opportunity to let my dear friend’s voice be heard is a privilege, and the information I found about the stigmas and stereotypes of those living with type one diabetes was shocking.
Jane’s diagnosis of type one diabetes was a shock to her and her family. Though the condition was not present in her family’s history, her brother was diagnosed a year prior, so her family knew what to expect. Jane explained how she was noticing weird symptoms and went to the doctor to figure out what was wrong.“I got diagnosed last October. I went to the doctor and realized I had lost almost fifteen pounds. They pricked my finger to check my blood sugar and it was in the 400s. My reaction was very bad, my brother was diagnosed the year before me with type one diabetes so I knew what that entailed. I was really traumatized and my mom and dad were really upset. We kept thinking ‘How is this possible? We have no family history.’ So it was just very shocking and my family was definitely upset but I have adjusted” I could only imagine her fear of her health. Jane knew what this condition would entail for the future, the “traumatized” feeling did not come from fear of the unknown, but her daily life being changed forever. Her day to day living was now forever changed. So I asked Jane if she could further explain her condition, what her day to day life is like, and what that entails for her daily routine.
“Basically my pancreas doesn’t produce enough insulin, which you need especially when digesting foods. I need insulin so I won’t die. I have to do manual injections of insulin or use an insulin pump, and I have an insulin pump which pumps insulin through a small tube that goes under my skin all throughout the day so that I can stay alive. Then I have to prick my finger to check my blood sugar sometimes, but I also have a Dexcom. The Dexcom is a continuous glucose monitor that connects to my phone through bluetooth so I can check my blood sugar at all times which is really helpful.” There are so many steps and precautions that Jane has to take to make sure that her blood sugar is stable and that she is getting enough insulin. Furthermore, I asked how she views these treatments and how these reflect her knowledge about type one diabetes now compared to when she was first diagnosed. “Obviously there is no cure for type one diabetes, all I am trying to do is keep staying alive and not die because this is the only way not to. But I see it as just a pain to have to remember this because before I lived almost eighteen years without having to do it. So just the fact that I have to type in all of the carbs I eat is kind of a pain but I’m used to it now.”
Jane uses a humorous approach when describing her daily routines tied to living with type one diabetes. I noticed phrases such as “I’m trying to stay alive” and “I am trying not to die” were said with a humorous tone during the interview. I took it into account to try to sympathize with Jane and understand if these statements were truly meant in a playful light and not as a defence mechanism to undermine painful and traumatic experiences she has lived through. Through her tone throughout the interview, the nature of the environment we were in, such as other friends being present, and her comfortability with talking about her experiences, it is clearly shown that Jane has grown from her discomfort with living with this condition. She does describe type one as adjustment and a difficulty to completely have her life altered, and it has not always been easy. I asked Jane if she believes herself or others living with type one diabetes have faced stigmas or negative experiences. “With my eye doctor I had a really bad experience. He basically told me I was going to go blind in twenty years which really traumatized me so I will not be going back there. I think he thought he was being funny but when you have type one diabetes the number one cause of blindness is diabetec retinopathy; where basically your blood vessels pop in your eyes and you go blind and he was trying to tell me not even three months after I was diagnosed. He knew that I was already stressed with my condition and really upset. He didn’t need to immediately add ‘Oh by the way you’re going to go blind’ because it’s not certain that I will. So I felt like that was just kind of insensitive.”
This story shocked me. Jane has future prospects with entering health care as a nurse. While it was alarming to hear about how inconsiderate the physician was, it is quite common in healthcare for doctors to focus more on the patient and outcomes rather than the person compared to nurses. I hinted at this and Jane had a few remarks to make about this dynamic. “When I was diagnosed with type one diabetes in the hospital, the nurses were incredible. When I was in the hospital the doctors would come in for five minutes, they would only talk to you for a little bit. But the ones who were building the personal relationships with you are the nurses. They are checking in on you the whole time. They were so nice to me and encouraging. They taught me how to do my shots for the first time and everything. This inspired me to go into nursing. I knew I wanted to be able to be what the nurses were for me when I was vulnerable so I am really excited about that.”
It was really insightful to hear how Jane took an unfavorable situation, and found inspiration and comfort through the nurses helping her during her treatments. Unfortunately, there was more when it came to the stigmas Jane has faced with type one diabetes. It didn’t stop at just Jane’s unfortunate encounter with her optometrist. Jane has had passive judgments from strangers and rude remarks from her own teachers. “I would say when I was in high school. Obviously I have a lot of accommodations here at UNC like the disability accommodations. But back at high school if I had to go and treat a low blood sugar in the nurse’s office the teachers would make comments like ‘oh you’re going back again?’ Then if I was missing class they would say ‘Oh were you at the nurse’s office?’ in a demeaning tone but they didn’t understand that I have to do that. This is what I have to do everyday so that was just another unfair treatment. I would say that all of my friends have been so supportive though, they were all at my house when I got back home from the hospital and wanted to learn how to do shots for me and even my roommate here, Jane pointed to her roommate who she invited to this interview, will wake up with me when I have a low blood sugar.”
I asked if Jane feels like those with type one diabetes have been specifically stigmatized against. She dove into these stigmas and how they have affected her, to which I asked her, what do you wish people knew that do not have type one diabetes? “So definitely yes a lot of people simply do not know the differences between type one and type two diabetes and they just think diabetes when it is completely two different things. Obviously type two can be genetic and it can be predisposed but people just think oh you ate too much sugar as a kid or it’s because you’re unhealthy when that is not the case. I literally have an autoimmune disease and there was no way I could have prevented it or cure it. I just wish people knew diabetes is not just overweight people. I feel like a lot of people assume that it is my fault or that I just didn’t take care of myself which is so frustrating. But people will notice my equipment, I tend to look like a robot sometimes, and people will ask questions or stare and I have to tell them but they just don’t understand. I wish people knew the basic things about type one. I notice when people stare I guess they don’t think they’re being obvious but the looks can make people feel uncomfortable. If people just knew the basics and were more educated that would be great”
To think about society today and the “woke” generation coming about with technology at our fingertips, it is hard to believe that the general public can be naive and condescending. Jane makes it clear that the glances and questions make her uncomfortable and are unnerving. She says a few times throughout this interview, “I wish people were more educated.” This speaks volumes to the type of assumptions and judgments that have been made about Jane and her condition. Not just strangers, but even the teachers, people students like Jane are supposed to look up to and admire, were passively making my dear friend feel inferior, and shameful. I wondered as to why there are stigmas that those with type one diabetes face. I wondered if there are any solutions or ways people could become more aware to decrease these passive judgments and undermine this serious health issue. The only conclusion I could assert was that, possibly, other health conditions are viewed as more vital, or worthy of our attention by society. This could be because those with type one diabetes can live a long healthy life with adjustments or that the condition is not immediately noticeable. I asked Jane how she has grown, and what she has learned since initially being diagnosed. Her response was heartwarming.
“I think I’ve become much stronger as a person. I know that’s cheesy but every day I have to do the basic things to live that I didn’t have for the previous eighteen years of my life. It was really hard at first but I have honestly preserved through that and that I’ve become more caring and understanding which I know will make me a better nurse one day.”
Jane inspires me. As a friend, sorority sister, and fighter, she constantly reminds me to be grateful and look on the brighter side. Never have I seen such a positive attitude on someone, she doesn’t let her condition define her, or let it reflect negatively towards her persona. While we were at our retreat with our sorority, Jane told everyone about her condition, which was when I first heard her talk about it openly. She seemed at peace, like she had lived with type one diabetes her whole life, while it was just recent. She is one of the strongest women I know. Jane has turned a horrific incident into a passion and devotion to help others and a plan for a lifelong career. I finally asked Jane, “If you could tell your past self anything or give any advice, what would it be?” She responded with, “It will get better. It’s not as bad as you think, I used to refuse to leave my home. I would just want to stay home and not go to the doctor. But I can do it and I’m still here so I’m just happy about that.” Of course there are hard days, and anyone living with a chronic condition can attest to this, but the perseverance, and optimistic attitude even after the adversity and stigmas Jane has faced is more than admirable. I look up to my dear friend everyday. In the future, I hope the general public will be more educated on type one diabetes so that those living through the condition can carry dignity and not feel ashamed by the current stigmas they face in today’s society.
Jane [pseudonym]. Interview. Conducted by Jocelyn Foxworth, 13 Nov. 2021.
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