Communicating about Disease

I think it is funny when I tell you I’m high you laugh. I think it is funny when I tell you I have to stop exercising and you say I’m lazy. But I think it is frustrating when I tell you I have to wait two hours before I eat you are annoyed, because you want to eat now. Most of all, I think it is funny that you never considered I may be a person with juvenile diabetes.

The role juvenile diabetes has in my life is a big one. I have had juvenile diabetes for more than half my life and it was not until recently I started questioning whose responsibility it was for others to become aware about my condition.

At first, I treated my juvenile diabetes like something to be shameful of, not worthy of discussion. However, this idea made me think that I was not worthy of discussion and I simply could not allow myself to continue to view my life that way.

When I tell you I am high, I am talking about my blood sugar levels. I have a certain target range I need to meet each day. Since I am on a sliding scale, I test my blood sugar, adjust my insulin dose accordingly and carry on with my life.

Some days, it is not as simple.

If I have learned anything from having juvenile diabetes, it is that this disease makes simple things harder and a lot of people do not realize what you are going through. Sometimes when I am about to go to sleep, I lie awake for a while and wonder if it is going to be the first time I fall asleep without waking up in the morning. I will admit to you that I have woken up with some pretty nasty lows and cold sweats.

Luckily, I have always been able to detect and manage my low blood sugar levels, even in my sleep.

When I tell you that I cannot eat right now because I am high, I’m not talking about pot. My blood sugar levels should fall between 70-140, which likely means nothing to you, but just know when I test my blood sugar and it is at 258, a meal is not my next step. Injecting insulin into my system is.

Unlike most people, my body does not produce insulin on its own. I have to take medicine in order to supply a function to my body that does not naturally occur. I count my lucky stars I was not born 100 years ago- I would not have survived the time period, as there was no treatment for juvenile diabetes.

There were no survivors of type one diabetes in 1914. In the 1950s, one in five people died within 20 years of their diagnoses.

Juvenile diabetes is not curable. It is treatable and sometimes tolerable, but neither of those are the same thing. Someone once encouraged me that if I was lucky I could one day overcome diabetes, but their statement was inaccurate. To me, this person was not supplying a statement of hope, but of ignorance.

Their ignorance was not their fault, but shared between us.

I have never wanted sympathy or coddling from anybody. If anything, aside from a cure for juvenile diabetes, I wanted to be treated as a regular person.

I am 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 that is what I am passionate about in this life. Certainly, I want to be special. We all do in some way, even if we are 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. It helps us make connections to our audiences, whether those are friends, family members, or readers of The Pointer. Establishing connections with each other is an intimate experience, even if just through a passing smile.

I do not hope the first or last thing you notice about me are my needles or container of glucose tablets that resemble colored Rolaids. I hope that if these are your lasting impressions, my experience enables you to become more aware of the people around you. According to jdrf.org, three million Americans are managing type one diabetes. They may not look so alone or discomforted but in a crowd full of people it is easy to push disease to invisibility, putting those coping with disease even further into the hole.

Allowing disease to the surface for discussion may seem difficult, but it is not impossible. Progressing past the people around you cannot be the tragedy of the passerby, but the justification of the interactor. An interactor increases communication, not through Facebook or Twitter, but through something a little old-fashioned that has survived for the past 100 years ago and now. That task is to ask people about themselves: who they are, what they are, and how they are with your voice.

Sometimes, “How are you?” is a more important and relevant question than you would believe. Juvenile diabetes cannot be spread, but is certainly worthy of communication.

Julia Flaherty
A&E EDITOR
jflah017@uwsp.edu

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