Diabetes is a condition in which the body is unable to produce or properly utilize insulin, a hormone which is essential for energy production from food. Type 1 Diabetes (previously referred to as juvenile diabetes) is an autoimmune disease in which the body destroys the cells of the pancreas responsible for insulin production. Type 1 diabetes is most commonly diagnosed in childhood or adolescence, but it can develop into adulthood. It is also less prevalent than other types, with type 1 accounting for approximately 5-10% of all diabetes cases.
To help rid the stigma around diabetes and spread awareness of this chronic condition, we spoke with a young patient about her experiences living with type 1 diabetes and asked her to share her insights.
Allison Kanarish, 24, was diagnosed with type 1 diabetes in her late teens. One of her most positive memories is the support she received from a nurse who also had diabetes. The nurse helped her through the treatment process, which speaks to this year’s International Diabetes Federation’s awareness campaign: “Diabetes: Nurses Make the Difference.”
There are many elements to diabetes that fly under the radar, such as the toll it takes on patients’ mental health. To help rid the stigma around diabetes and spread awareness, we spoke with Alli about her experiences living with type 1 diabetes and share her patient perspectives below.
Can you tell us about your experiences with diagnosis?
I was diagnosed with type 1 diabetes when I was about 17 years old, which is relatively late in life compared to the average. I was in my senior year of high school and I had just gotten over having mono, so I didn’t feel well for quite a while.
My physician and I attributed some of my symptoms to that illness; however, I kept feeling unwell and I was not getting better. I was exhausted. I fell behind in my schoolwork because I would sleep both during my classes and after school. Teachers gave me a hard time, assumed I was lazy, and thought that I didn’t want to do the work. They also questioned how I was spending my time after school. I did have a couple of episodes of sweating, vomiting, and extreme thirst—all characteristics of high blood sugar levels—but at the time, I didn’t know what those signs meant.
One day, I was making and eating cupcakes with a friend, and we consumed large amounts of sugar. I ended up in the hospital feeling just absolutely horrible. I even had a tingling sensation that ran from my fingers up my arms, which was something I never experienced before. I felt silly for coming to the hospital because of that. I was unable to convey exactly how I was feeling. Still, I had this intuitive feeling that I was not okay—that something was really wrong—and I needed help. The triage nurse asked if had been drinking enough water. She said teenagers often came to the hospital dehydrated. After being admitted to the hospital, they ran some blood work. Shortly afterwards I had a physician come to speak with me. He told me that I had diabetes.
I watched my parents’ reactions and they looked deeply upset. At the time, I had no concept of what that disease really meant. I had only heard about type 2 diabetes, so my initial reactions were: “What did I do wrong?” and “Why is this happening to me? I exercise and I eat pretty well.” I was confused and ashamed because to me, diabetes was nothing more than the stigma associated with type 2 diabetes: a disease that happened to older or overweight people.
I stayed in the hospital for a few days and they found me a nurse who was a type 1 diabetic. I can't say enough good things about her. She told me the same things as everyone else, but it was so much more believable coming from someone who had been in my situation. She said, “I've been you. I was there. I was a little younger. But you are going to be fine.” That was huge for me.
What treatment options were available to you once you got the diagnosis?
The team looking after me started me on a long-acting insulin and a short-acting insulin via pen needles, which is simple and doable.
I also learned about counting carbs and many other basics. I remember coming home from the hospital, getting out a box of cheese crackers, and counting out individual pieces to calculate the carbs. It was an overwhelming feeling. I remember thinking, “This is going to be my life now.” Today, I have a better understanding of how many carbs are in what foods and it's just more intuitive to me. At that time, I was terrified.
What sorts of advanced technology help you as a patient?
I transitioned into using an insulin pump system and continuous glucose monitor. I couldn't live without it now. I understand now just how simple my initial treatment plan was, because my current system is complicated. It does require more advanced understanding of the condition in order to operate it correctly.
Every time I talk to a diabetic who doesn't have a glucose monitoring system, I strongly urge them to get it. A glucose monitoring system can make informed predictions as to what glucose levels will be in the future, which is key
The tandem pump I use has a new integrated system in which the pump actually makes real-time adjustments independent of the user based on that data. Features like this bring the system closer to being fully automated.
As a woman who has type 1 diabetes, do you feel any other burdens?
I think that the female beauty standard really comes into play with diabetes. Many diabetics struggle with weight gain due to frequently having to snack to offset excess insulin, and the body image issues that come along with that are certainly made worse by unobtainable societal expectations for the female figure. Not to mention bruises, lumps, scars, and wearable devices are not often displayed on the models we look at as ideal women. I personally have endured comments like “you would be more beautiful if you didn’t have to wear that device,” and I would be lying if I said I haven’t put an outfit back into the closet because I didn’t like that it showed off my insulin pump.
Fluctuation in blood glucose levels can make you feel out of sorts and it affects different people in different ways. Depending on how low or high my blood sugar is, I experience a wide range of emotional affects, from sudden outburst of sadness or worry to extreme irritability. It’s hard to try and hold it together or act naturally when you’re feeling irritable. People might not know and assume you’re being nasty. There’s a quick jump to assume a woman when she's irritable or having a hard time that she has her period, or is moody. For a man, it may be perceived differently, like he’s just having a bad day. That difference in perception is certainly an added layer.
What do you want physicians, researchers, and the general public to know about your condition?
I personally adore my endocrinologist and think she does an excellent job. She's empathetic. She listens. She always discusses new research and tells me to check out something new if she finds it worthwhile, which I really appreciate
I think doctors who aren’t diabetic themselves may underestimate the mental health aspect of the disease. It's an enormous component of managing the disease—your mental health can directly impact your blood sugars and your blood sugars can directly impact your mental health. I think that mental health needs to be a part of the discussion in every diabetic’s treatment plan. There are times in my life when managing the disease felt impossible. Additionally, there’s a danger of looking at your numbers and deriving your sense of self-worth from them. People might think if you do the work, and follow the doctor’s orders carefully, you’ll have good glucose levels, but that’s not necessarily true. I have experienced countless days where I feel as though I have done everything right, and simply cannot get my blood sugars under control. It’s important to understand that the glucose reading is not a direct equivalent to the diabetic’s effort to manage it.
In terms of researchers, I think it's important for researchers or people who are developing this technology to have a type 1 diabetic on their team. Obviously, it’s important for new technology to be tested in real-life scenarios. However, you must consider that when you ask a patient to change the way they manage their diabetes, you’re asking them to have an adjustment period in which they will feel worse and struggle more, at least temporarily.
I also want the general public to understand that there are multiple types of diabetes, which differ greatly in their causes, as well as the amount of work it takes to manage the disease. I can’t speak for others living with chronic conditions, but from my perspective, it’s not beneficial to me to receive sympathy. It doesn’t feel good to hear how sorry someone is that I’m diabetic. Diabetes is simply a part of my life, and a part of what makes me who I am as well.
How have family and friends supported and helped through your management of diabetes?
The most supportive thing is people caring enough to learn and understand. When I was diagnosed as a young adult, it was my burden to bear. Many people who are diagnosed at an earlier age have parents who are more directly involved—they have to understand more about the disease because it's the parents who are truly managing it.
I was diagnosed late enough that I had to take ownership and do it myself. I have always felt most supported by people who take the time to learn and understand about the disease and become informed. I feel a sense of normalcy when others use correct terminology for my medical devices or provide informed feedback to my concerns. I also feel supported by people who just want to talk about it—that's how I process things. Even if the questions seem silly to me, I still appreciate that because it makes me feel like people care about it. It’s difficult for me when people who are close to me don't understand even the basic concepts—that makes me feel like the disease is distant to them, or that they didn’t take the time to be informed.
Our in-house therapeutic experts leverage their existing relationships with leading investigators and key opinion leaders in cardio-metabolic diseases to effectively execute patient recruitment and site management and support strategies. We’ve conducted studies with at least 30 compounds developed for the treatment of type 1 or type 2 diabetes or metabolic syndrome, and the majority of our Phase I and II studies were performed in our clinical pharmacology units in the Netherlands and the US.
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