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....

Views: 18

Tags: 1, Diabetes, Type, anger, anniversary, depression, fighting, system, the

Comment by MichelleStu on May 21, 2009 at 8:50pm
Jenn
Sorry you are struggling. Often being diagnosed with a chronic disease is compared to going though all stage of death and lose of a loved one, shock, denial, anger, despair, etc. it is very difficult to deal with diabetes physically and emotionally especially when you are first diagnosed, I struggled for the first 4 years when diagnosed. But i realized I just didn't want to stay in that frame of mind...A mantra i try to live by is..."ultimately in life, it is not what happens to you, but how you choose to handle it that matters." Life is not easy, we all face our own set of, fails, hardship, trauma, joys, successes, etc. Being positive doesn't mean that you've given up the fight, for me it just means it will not control my spirit.. I truly believe every door that closes is another door open. Every challenge is an opportunity. I know it sounds all so cliche and it's not that I don't ever get frustrated about this disease, but I do control the amount of time I allow myself for such anger, because seeing the good, counting ones blessings and living in the moment and being positive, is so much better use of my time. Plus smile and laughter is good for my overall health

I have to see the good in "diabetes" and for me that means, it has made me a stronger person, I do not take life for granted, willing to fight for what I need and others in my family need especially as it relates to their health and respect, cherishing time, I take greater care of my world and the world around me, and also realizing while it's not easy, this disease is manageable.

I hope you find comfort, and work through the anger. You are obviously an honest, well spoken, passionate person, who has done many positive things to help find a cure and raise awareness, informing others about diabetes, continue to find your voice through it all. Good luck!
Comment by snowangel66 on May 22, 2009 at 5:41am
I absolutely know where you are coming from, trust me I have many of these days. But the way I think about it, if god were to give me a choice of all the chronic illnesses in the world I would choose diabetes. The great thing you have to think of is that we are the ones who are in control of how our body wants to treat us. There are people out there who suffer no chronic illness, eat junkfood and takeaway everyday of the week, smoke, drink, stress, don't exercise, and many of those people don't think twice about the effects that is putting on their bodies because in terms of 'illness' they don't have one haha. However with diabetes, it is like.. okay if we do not manage a healthy lifestyle this disease will eat us, so we are forced to better our wellness, eat healthy and exercise, I think that's a good trade off! because when you think about it, who will live longer, the non-diabetic who eats junk food and doesn't care for their health or the diabetic who fights everyday for better well being and health? I think we won!

I mean don't get me wrong, this disease can do horrible things. Its on my mind every minute of the day.. everything I do involves taking care of my diabetes is some way, and I get those days where I just want to cry and say, out of all of the people dating back into my ancestry WHY must it be me who get's this! its a horrible thing, but as far as chronic illness goes I thank god that I have something I have control over.

goodluck! :)
Comment by Joe on May 23, 2009 at 7:37pm
hey Jen, anger is good. Anger is better than numbness. If you stuff the anger it will turn inward, and lay a foundation of deep hardened resentment and possibly depression. Be mad, this sucks and no one can say it doesn't. I think there are folks who are too positive, I find that some of them are in a kind of denial, you know, "it's okay, I'm okay" but you know, it's better than "I am sick and I am going to die of complications and my life is ruined" every single day...denial is a system of self protection, it protects us from seeing the whole truth because sometimes if you see the whole truth at once you'll lose it.

I remember my diagnosis. I was 12 years old, and it was 31 years ago (and, btw, BEFORE there was urine "test strips"). There ain't nothing peachy about analog insulin, pumps, and finger prick blood glucose machines, nothing peachy about them at all except that it makes diabetes suck a little less than it did 31 years ago.

every single day then becomes a choice. you either lose the day to anger and resentment, lose the day to the paralysis of depression ...or live it. Life doens't mean happiness ever after, life is just life. Also, for me this was not a conscious choice, ohh yea I could tell people I am okay, but you can talk the talk and still feel like s**t. The choice comes from within, when I got exhausted from being angry, when I got over blaming corporations, the sun and moon, chickenpox, and sunburn on my diabetes, and stopped believing that diabetes was a punishment because I somehow deserved this... only then came an acceptance, and a true change in my life that allowed me to live most of the days again. and I said most on purpose, because bad days still come and go.

May you reach acceptance swiftly. I hope you don't lose as many days as I did. I have been diabetic many years but in the story of my life, it's a minor footnote. who's the hero in the story of your life? Think about it, and God bless.
Comment by Jill Knapp on May 25, 2009 at 9:59pm
I have had anger through the years. It's OK. Acceptance is something that takes some longer then others but I believe it's a must to stay in a sane place. Hang in there! :-) I am thinking of you!
Comment by FatCatAnna on June 2, 2009 at 10:42am
Very, VERY good blog Jenn - you are not alone as you can see in how you are coping with diabetes. Hang in there (my fav phrase) - you're not alone in dealing with this roller coaster ride of your life. Also, I know I wish I could have had a group like this and the other ones that are out there in "cyberland" - it just helps me not feel so alone and like some sort of freak at times (note - I do not wear my devil horns ALL the time - I might get pulled over by the police as I drive - since they do flash red).
Comment by julez_79 on February 18, 2013 at 10:32am

I know you posted this years ago, but I just read your words and having been diagnosed 8 months ago, I just want to say I very much feel your pain and understand what you are writing about.
When I was diagnosed and started to tell the people around me, the first reaction was always "oh god, I m so sorry!" and immediately after that it was "oh but you know I know this person with type 1 diabetes and they are managing sooo well, really, management of this illness has become so good now, it doesnt really need to alter your life at all..!"
It was almost as if I wasnt even allowed to say anymore how much I thought this sucked, - To not make the other person feel bad or something, to not be a spoilsport.

Like with all chronic (or mental) health issues, there is no way to imagine what it feels like unless you experience it yourself. To me, we are all heroes in a way. To live with this "potentially fatal illness" every day, for the rest of your life, it is a huge challenge. So when I am really down about being diabetic, I dont usually tell myself how its all just not really that bad. I personally get more comfort out of telling myself that every day that I m managing this f***er I should be proud of myself, That I deserve praise and really I should be getting some sort of medal or gift from my government or something ;)
See now I turned all "motivational speechy " on you whereas thats the last thing I wanted...Must be because theres so many americans on here, germans are really very much better at being gloomy and pessimistic ;)
wish you all the best with everything!

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