I write a lot about challenge. I write a lot about goals. I write a lot about pain, and struggle; I also write a lot about victory and overcoming obstacle. Without a doubt, the thing in my life that exemplifies all of this pain, struggle, obstacle, victory, and challenge is living with Type I Diabetes. Insulin dependant diabetes; juvenile diabetes; IDDM.

While out the other day, I heard a misunderstanding about diabetes I often hear: “my aunt has an insulin pump. She has to because her diabetes is so severe.” At this point in my life, my instinct is to just say “oh really? that’s too bad,” when really I should see it as an opportunity to educate. I should have said “Actually diabetes is kind of an all or nothing disease. Basically you have it or you don’t, it doesn’t vary in severity.” Sure there is a more complicated answer than that, but without saying anything at all, I’m not accomplishing anything. All silence does is contribute to ignorance. That is why I’d like to explain to my readers what it is actually like to live with this disease. I don’t intend to educate you about how diabetes works, if you want education go here. I just want you to know what it’s actually like to live with disease, every day.

When I went to the Seattle Sweden Diabetes Awareness Conference late in 2010, one of the speakers said something that really hit home: “imagine what it’s like to work really hard at something and fail. Now imagine what it’s like to work really hard at something you don’t want to work on, and there’s no end to it, and you always fail.” That is what trying to control blood sugars is like. It’s like working really hard at something, every second of every day, and still in the end feeling unsuccessful because it’s all about damage control. It’s balancing what you eat with how much insulin to take; it’s knowing that the amount of insulin you take affects your metabolism and your weight; it’s understanding that if you then decide to exercise later in the day, you probably have to eat more to balance out the calories burned with the amount of insulin you’ve taken. Type I Diabetes is living in terror of complications like kidney failure, and neuropathy. Type I Diabetes is having an immune system so compromised you have to go to a wounds nurse after you stub your toe and it bleeds.

It’s more than that. It’s also hoping and praying that it isn’t something you did or your parents did that made you get this disease. It’s not being able to visit your boyfriend for the weekend and change your eating and sleeping schedule without getting debilitating, exhausting, and nauseating low blood sugars. It’s not being able to sleep in even on a school or work holiday. Not being able to go on an impromptu vacation with your friend because you have to go home and get your medical supplies.

It’s also knowing my body extremely well. Being able to read my headaches, stomach-ache, dizziness or even moodiness like a book. Knowing how individual foods affect me for hours and hours after.

Having diabetes is an extremely personal struggle, but I’m trying to open up about it because I know I can’t do it all alone forever. I guess my point is, if you know someone who is struggling with anything, be there for them. Be present, don’t be pushy but be present. Sometimes it’s nice to be able to turn to a friend and say “this is hard.”