Communicating About Disease
This article was written by type 1 diabetic college student Julia Flaherty. It originally appeared in her university's newspaper, The Pointer, and was republished on Information About Diabetes with permission.
I think it’s funny that when I tell you I’m high you laugh and when I tell you that I have to stop exercising you say I’m lazy. I think it’s frustrating when I tell you I have to wait two hours before I eat you are annoyed, because you want to go out for supper now. Most of all, I think it’s funny that you never considered I am a person with juvenile diabetes.
The role that juvenile diabetes has in my life is a big one. I have had juvenile diabetes for more than half of my life, and it was not until recently that I started questioning whose responsibility it was for others to become aware of my condition.
At first, I treated my juvenile diabetes like something to be ashamed of, not worthy of discussion. This idea, however, made me think that I wasn’t worthy of discussion, and I simply could not allow myself to continue to view my own life that way.
Diabetes Makes Simple Things Harder
When I tell you I’m high, I’m talking about my blood sugar levels. I have a certain target range that I need to meet each day. I test my blood sugar, adjust my insulin dose accordingly (I’m on a sliding scale) and carry on with my life.
Some days, it’s not as simple.
If I’ve learned anything from having juvenile diabetes, it’s that juvenile diabetes makes simple things harder and not a lot of people realize what you’re going through. Sometimes, when I’m about to go to sleep, I lie awake for a while and wonder if it’s going to be the first time I fall asleep without waking up in the morning, because I’ll admit to you that I’ve woken up with some pretty nasty lows and cold sweats.
Luckily, I’ve always been able to detect and manage my low blood sugar levels, even, literally, in my sleep.
When I tell you that I can’t eat right now, it’s because I’m high, and in case you haven’t realized, I’m not talking about pot. My blood sugar levels should fall between 70 and 140, which still likely means nothing to you, but just know that when I test my blood sugar and it’s at 258, a meal isn’t my next step; injecting insulin into my system is.
Type 1 Diabetes Is Not Curable
Unlike most of you, my body does not produce insulin on its own. I take medicine in order to supply a function to my body that does not naturally occur. I count my lucky stars that I wasn’t born 100 years ago – I wouldn’t have survived that time period, because there was no treatment for juvenile diabetes then.
There were no survivors of type 1 diabetes in 1914. In the 1950s, one in five people died within 20 years of being diagnosed.
Juvenile diabetes isn’t curable; it’s treatable, sometimes tolerable, but none of those is the same thing. Someone once encouraged me that if I was lucky I could one day overcome diabetes, but their statement was inaccurate. This person was not supplying a statement of hope to me, but of ignorance.
Their ignorance, however, was not their own fault, but shared between us.
Diabetes Does Not Define Anyone
I have never wanted patrony from anyone, nor sympathy or coddling. If anything, aside from a cure for juvenile diabetes, I wanted to be treated as a regular person.
I’m realizing now more than ever that if I want to be the most normal version of myself I have to be honest with others, especially in writing, because it’s what I’m most passionate about in this life. Certainly, I want to be special. I think we all do in some way, even if we’re not too crazy about being the center of attention. We want to be recognized for our skills.
Sometimes, normalcy is our most important form of recognition, as it helps us make connections to our audiences, whether those are groups of friends, family members or readers of “The Pointer.” Establishing connections with each other is an intimate experience, if even through a smile in passing.
Although I don’t hope the first or last thing you notice about me are my needles or container of glucose tablets that resemble colored Rolaids, I do hope that if these are your lasting impressions my experience enables you to become more aware of the people around you. According to JDRF, 3 million Americans are managing type 1 diabetes. They, like me, might not look so alone or discomforted, but in a crowd full of people, it’s easy to push disease to invisibility, putting those coping with disease even further into the hole.
Allowing disease to surface for discussion may seem difficult, but it’s not impossible. Progressing past the people around you cannot be the tragedy of the passerby, but the justification of the interactor – a person who increases communication, not through Facebook or Twitter, though I’m admittedly active on both, but through something a little old-fashioned, that I’m glad has survived 100 years ago and now. That task is to ask people about themselves: who they are, what they are and how they are, just with your voice.
Sometimes “How are you?” is a more important, relevant question than you would believe. Juvenile diabetes cannot be spread – it is not a communicable disease – but certainly it is worthy of communication.
Julia is the editor of the Arts and Entertainment section of The Pointer as well as a blogger and promotions director. Click here to check out Julia's blog.
Photo credit: Sten Dueland on Flickr