“I have Type 1 diabetes.”
A frequently-repeated statement in my life since I was diagnosed in 2014. My pancreas stopped producing insulin and now I take insulin every single day, at every single meal, for every single thing I put in my body.
I take insulin to control my blood sugars. Whether they are high from food, stress, hormones or lack of sleep or when they’re too low, and I ironically need to eat sugar to bring them to a safe level. Too much or too little insulin could kill me. It makes life a little more interesting when every single thing I do affects my chances of survival.
Luckily, I have an insulin pump and a continuous glucose monitor. They take away the daily annoyance of shots and finger pricks, but life isn’t a walk in the park just because I have new technology. I still deal with ignorant comments from people who don’t know any better, judgment for constantly stuffing my face with random foods and severe sleep loss.
Common misconceptions
“You don’t look diabetic,” may be one of my least favorite comments to get. My typical response is a sigh and an eye roll, and then I carry on with my day, other times I respond with a quick “well, what exactly does a diabetic look like?,” often answered with an uncomfortable silence.
Diabetics, type 1 or type 2, don’t have a specific “look” that distinguishes them from anybody else. Only because of perpetuated stereotypes, people believe that diabetics are overweight, unathletic and simply didn’t take care of themselves and that is the reason their body decided to retaliate against them.
Nobody would walk up to someone with breast cancer and say “well if you just took care of yourself, this wouldn’t have happened,” but they think it’s okay to say this to diabetics. I have received this comment far too many times in the short five years I have been living with this disease. Almost every time I hear it tears begin to swell and I become infuriated all at once.
A part of me does blame myself for my diabetes, maybe if I hadn’t eaten so much ice cream as a kid this wouldn’t have happened. But at the end of the day, I, nor anybody else with Type 1 diabetes, asked for or did this to themselves. To say otherwise is incredibly hurtful and wrong.
People don’t seem to realize their stares and side commentary about the medical contraption on my body or curious looks wondering if there is something wrong with me hurt a lot. Worst of all are the “she brought it on herself” and other ignorant comments that are just wrong.
These comments cut deeper than almost anything else that could be said to me. They hurt me, they hurt my parents and these types of comments hurt the diabetic community I am so grateful to have support me. Dealing with Type 1 isn’t a joke, just like any other chronic illness isn’t a joke. Unfortunately, people like to make fun of diabetes because they don’t seem to take it as seriously as it really is.
Day-to-day diabetes
One constant thing about living with diabetes are the random foods I’ve had to eat when I didn’t want to, just to survive the night. Yes, this sounds dramatic but on more than one occasion I have woken up to somebody shaking me awake because my sugars were so low I couldn’t hear my alarms screaming at me.
I have hours and hours worth of time I do not remember because my blood sugars have dropped to an incredibly unsafe level and my brain stopped functioning properly. People tend to stare when I pull out random bags of candy at any given time.
Another important aspect of my day is the lack of sleep that I get on a daily basis. Let’s face it, college students don’t get enough sleep as it is. But what about diabetic college students?
Unfortunately, diabetes doesn’t really care that I haven’t gotten an undisrupted eight hours of sleep since 2014. It doesn’t care that I have had a long day and have another long one tomorrow. It doesn’t care that I am physically and emotionally exhausted, that I just want one good night’s sleep for myself and my parents.
I joke around, saying “Here I am going low instead of going to bed.” But that is a cruel reality I and millions of others face on a nightly basis. There is an incredible amount of anxiety towards going to sleep because we risk not waking up in the morning.
If my sugars drop to an unsafe level, anywhere below 70 mg/dL, my Dexcom alarms start to go off. But think about your alarm clock, do you always wake up? What if your brain wasn’t functioning at full capacity and you’ve slipped into a deeper sleep?
Then begin the phone calls, the frantic texts from my parents trying to make sure that I am okay, that their child will wake up in the morning. My alarm clock rings in the morning and I want to cry, I am always tired. People say “why don’t you just take a nap, give yourself a break?”
I can’t take a break. Diabetes doesn’t take breaks. So, at 2, 3, 4 a.m. when I have to be up at 7 a.m. for class, I will be awake texting my parents to let them know that I am okay, that I will wake up in the morning and I will carry on with this disease regardless of how many times I want to give up.
Being a “normal college student” at UW
Being on one of the largest party campuses in the country is a whirlwind college experience. It is so fun and exciting but also comes with issues I never thought I would deal with. I deal with the reality that people don’t invite me to parties because I don't drink anyway.
Most people assume I don’t drink because of religion or personal preference but in reality, diabetes dictates this aspect of my life too. Drinking goes from fun to dangerous very quickly for diabetics. Our bodies start functioning differently, our kidneys go to processing the alcohol out of our systems rather than toward helping keep our blood sugars high enough.
There are carbs in alcohol that have to be covered with insulin for, but what if I don’t finish my drink? What if I pass out because my sugars are too low but people just assume I drank too much? Being on a large college campus is great until you have to accommodate the dangers of a hefty drinking culture.
So, if you have friends that don’t drink for whatever reason, invite them anyways. They might not drink but that doesn’t mean they can’t be included in the fun.
Looking the part of a college student
What’s wrong with your leg? What’s that lump on your arm? Why do you have a bump on your stomach? These questions seem harmless but are still incredibly personal and rather hurtful. Just because I have a random appliance on my body doesn’t mean that it should be pointed out, usually in a disrespectful way.
I know not every person is meaning to be rude, they are simply curious about the weird bumps. But, as a person who struggles with self-confidence enough as it is, having my appliances pointed out makes it even worse.
Everyone wants to fit in, find their place and their friends on campus. We all want to look good and be comfortable in our own skin. Being self-conscious is not only limited to having a chronic disease, it’s had by many. Take a moment to imagine how that feeling is intensified when I have to be extra conscious of it by having medical machinery on my body all the time.
I choose my clothing based on where my pump and glucose monitor is. For prom, I chose dresses with appliques on one side or the other to hide my pump more than a plain dress would have.
I work with little kids over the summer and they did not like how “boring” my grey insulin pumps were, so, I have started to paint my insulin pumps because it makes them prettier. I don’t think my kids understood what their opinions meant. I never thought about painting my pumps until they suggested it.
They gave me ideas every week for what I should paint on my pumps and it gave me a little more confidence to not hide my pumps, but to instead show them off. Unfortunately, some people don’t care if they are painted or not, they will still ask what is wrong with me and why do I have to wear these things.
I want to curl up and hide under baggy clothing so people can’t see my appliances. I start to think about how weird and unattractive I must look with all of these things hanging off of me. I think about the people who stare, the parents who pull their kids away from me when they see my pump as if I am contagious with some horrible disease.
I don’t usually think about my pumps or my glucose monitor until someone points it out. Then, that is all I can think about — how ugly it is to have this disease. That, because of diabetes, I will never be the pretty girl, I will only ever be the diabetic girl.
How to manage the diabetic-student life
Luckily, UW-Madison’s campus has the McBurney Center that is incredibly helpful in setting up accommodations, especially for those of us that may need a random 15-minute break to eat some skittles.
I have accommodations through McBurney so, in the event of low blood sugar, an event that prevents my brain and body from functioning properly, I can have time added onto the testing period.
Regardless of these written accommodations between McBurney Center, myself and the University, there are still professors and TAs that fail to understand why I need them. “You can’t eat in here,” the instructor glares at me while I munch away on some Skittles as my glucose monitor reads ‘LOW’.
This ultimately results in a back-and-forth discussion that goes on too long and thus produces an intense testing situation. Professors and TAs just sign off on accommodations and few of them actually read what they are. They have too much to worry about to focus on yet another kid with accommodations but this unfortunately, leads to a lot of miscommunication and hurt feelings.
Just remember...
A day-in-the-life of a girl with diabetes involves lots of tears, pure exhaustion, incredibly supportive friends and family and blessings that I am able to survive each and every day.
There is a saying in our diabetes community, “I have diabetes, diabetes doesn’t have me”. I try to remind myself that I am a girl with diabetes, not a diabetic.
Diabetes affects every single aspect of my life, even the little things like deciding what type of food I want to eat. At the end of the day, I live my life as normally as possible given the circumstances. I still play club sports, I work out, I even ran my first half marathon a few weeks ago. I participate in life as much as I can because I know how precarious life with diabetes really is.
