So I’m majorly reliving my diagnosis upon this anniversary of 1 year ago this week. And not at all in a positve way. All the anger, frustration, resentment, despair, depression…it’s all been very strong this week. I haven’t been llike that continuously for the past year, but I always had those moments, which from reading other D’s stories, seems normal.
I believe that when one is in pain, sometimes you cannot see clearly, but you can see things you’re unable to see otherwise. In these moments of pain is when I have all my ideas about D and all my feelings manifest into words. This makes sense in the way that when everything is smooth, there’s no reason to seek change.
When I entered this world of Type 1 D, I felt like I had uncovered this mysterious underground world of pain and misery and daily complications for which I had NO reference. I knew no one with this. And being a counselor working over the years in a juvenile detention facility, an alternative school, and a domestic violence shelter, I have seen my share of traumas, drama, and “underground” worlds. It was a shock, like “how could people be living like this?” coupled with guilt for not realizing HOW bad Type 1 was! I was ignorant.
And now I realize why. Some of you may disagree with what I am about to write. But I would like to put myself in it to blame too. We are TOO POSTIVE. Yes, we do it for survival, we do it for our own mental health, we do it to not alienate our friends and family. But what if we told the truth all the time? What if we kept telling everyone how F**KED UP this is? It’s like only our own little world knows. I wanna scream it from the rooftop. I wanna tell everyone I meet. I do tell many people. Sometimes they look at me like I’m crazy, like why is the seemingly normal woman telling me about her diabetes? At the same time, I feel like NO one can really “get it” unless they live it, but I think we should keep telling people how much it sucks. Maybe if I heard it one day along my 34 years, when the doctor said TYPE 1 DIABETES, I would have had an inkling of what that meant, more than the pill popping idea of type 2s (no offense to my nonna intended). I would have understood a little when I heard the word. I would have had a face to the disease. I would have thought about it when people say “cancer” and I’d say, “diabetes sucks too”.
I feel like for those of you who grew up with urine test strips and the idea that sugar was the only evil, maybe we have come a long way. But as someone who JUST arrived on the scene, I feel like we are in the stone ages! I feel like the community has GIVEN UP and surrendered to the idea of “this is just how it is”. Sure, we walk our walks, and do our fundraisers, only to give our money to organizations like the JDRF that isn’t really looking for a cure, but another temporary patch like the joke of an artifical pancreas (NOT A CURE, just a moneymaker).
I came in this community ready to fight the good fight. (and by community I mean diabetic, not TuDiabetes-which has been so helpful!) I raised money for the JDRF Walk in Philly. But the more I researched, I realized they are putting the research dollars into another product. WE WANT A CURE. I think the pump and the artificial pancreas are not where our resources should be going…money makers to shut us up and just “patch us up”, but not really dealing with the problem.
Most of us I think are so busy managing our glucose, how can we fight the system too? Or am I alone in this feeling?
When asked now, “how are you?”, I wanna say “good”…but how can you be “good” when you have a chronic illness that requires obsessive management to survive every day 'til you die? And why should we lie and act like it’s all good when it’s not? Because we don’t want to scare people with our truth? Because it will fall on deaf ears. I say we speak it anyway. Even if no one listens. It infiltrates their subconscious.
It’s such a difficult balance, because I know I don’t wanna turn into a “Negative Nancy”…but I cannot answer “how are you” in a positive way anymore.
How are you?
Still diabetic…
