Monday, March 14, 2011

#JDRFGovDay

Over the weekend a small group of D-bloggers was invited to go to the Nation’s capitol to speak on behalf of our entire community. While I would have LOVED to have been invited, I was very happy with the bloggers that were picked. They are a great representation of our community and I feel proud to say that I can count them among my friends (both those I’ve met and those I haven’t). Also, it would have been bad as I’ve been at home recovering from strep throat since Friday morning ;) (more on that in another post).
One of the great things about the event was that all of the bloggers were tweeting while they were there, so those of us who weren’t there could still ask questions and have a front row seat to what was going on. I followed #jdrfgovday faithfully all day Saturday and Sunday.
There were some amazing topics discussed and some were topics that really needed to be brought to life. But that’s not what this post is about. It’s actually about a tweet that Kerri (@sixuntilme) posted. I believe she was quoting someone who was there. But what that tweet said really had my mind turning. It said “People just don’t understand the dangers and the difficulties of type 1 diabetes.”
Wow. I’ve talked about how it can be hard to explain living with disease to people. But as I was thinking about it today, I kind of looked at it a little bit different. Diabetes has such a bad connotation in every day life. As an adult with T1, people automatically assume you’re a T2. And that diabetes is “your own fault” (which I DON’T believe for either type). I never hesitate to correct people on what type of diabetes I have. But I also make it a point to not complain.
I don’t want people to take pity on me. I don’t want them to think “poor girl” or “how sad” when it comes to me. I like to think of myself as a fairly independent person. I hate asking for help in any area of my life. I don’t want to appear “needy.”
Because of this, I typically play down my life with diabetes. I tend to play it down in my own mind as well. It’s just part of life. I do it. Every day I’m my body’s pancreas. I count carbs, test, bolus, do site changes, make corrections. Its route at this point (after 25 years, it should be!).
I can be low or high. And while I may mention it in passing to someone, I don’t often let them know how badly I feel. Or how frustrated I am. Or how scared I am. Most of the time I don’t even let the online community know these things, although it is easier with you all than it is with anyone else.
Unless you live this life, you can’t really know. I’m so thankful for my friends and family, who understand better than anyone in my “real life.” They are the ones who see me in my weak times. But even with them, I like to protect them. I don’t always let them know. Because why would I want to worry the people I love anymore than I know they already worry about me (I believe the correct term for this is diabetes guilt)?
The truth of the matter is that living with diabetes is HARD. Sure, it’s part of everyday life. But it isn’t easy. It never leaves. It never takes a break. On vacations, diabetes is there, often times screwing it up. Diabetes makes taking a trip to the mall harder. It makes being sick harder. It makes preparing for a wedding harder. It makes planning a family harder. It makes driving for long distances harder. Diabetes means extra steps, and thinking ahead, and over packing, and preparing for every possible circumstance.
Diabetes affects every single aspect of my life. I don’t make it a secret that I stay at my job for the insurance. The things I would love to do are not an option at this point in my life simply because I have to think about diabetes. If I were anyone else (with a functioning pancreas) I would have probably sought a different path a few years ago. But everything that I want to do requires me to either return to school or to risk a job that would have no health insurance. Which, as we all know, can be detrimental to our diabetes health.
Most days diabetes doesn’t rule my life. Most days I integrate it into my life. But on the days it does rule my life (rollercoasters anybody?), I do my best to keep it to myself. But I’m thankful. I’m thankful for my health, I’m thankful for the D-OC, where I know I can always go for support. I’m thankful for my friends and family that support me. I’m thankful for my job that has terrific health insurance.
But the real question is, do I share more with people who are in my life every day? Would sharing my fears and my frustrations do more good? Would it help advocate for diabetes? Should I be sharing more? Educating more? Would it help bring more light to this disease? I think I walk a fine line between wanting people to realize that treating this disease is HARD WORK and wanting them to realize that I don’t need pity, only support.
Perhaps I’m too weak to handle that. I’m not sure. How does an independent person share a part of their life with others that is going to make those people worry about them? I don’t take compliments well. And I don’t take others’ worry well either. Do you share your ups and downs and frustrations with your “real life” friends and family? Do you get pity? How do you deal with it?

5 comments:

Wendy said...

It was an awesome event! So very cool to be a part of it :)

It's interesting you ask this question, because I've noticed that I'm separating my life. I have 2 FB accounts and 2 blogs...almost as if I feel like I need to give people a choice of which part of me they'd like to have in their lives. Reality is that mothering T1 has become deeply rooted into everything I do. I don't want anyone's pity...but I do hope they come to understand that T1 isn't something to take lightly.

Mouse said...

So well said, Cara. I wish there were an answer to that question! The thing that is even more difficult than coping with diabetes 24/7....read: relentless....is coping with people who just don't understand....or the people you love that keep being hurt over the struggle they see you go through. I just don't know....but I'm SO THANKFUL for my D friends! D friends are absolutely perfect: no pity, no judgment...only support! And someone to share glucose tabs with! :-)

Jillian said...

I just drafted a similar post but more related to Twitter. Allison was the first person to follow my "personal" twitter and I was okay with it, but now a few more DOC people have found me and I'm not sure how I feel. Diabetes is a huge part of my life, but it doesn't make up what I tweet about or Facebook about and I'm not sure if it should either. Anyway, just saying I understand where you are coming from and I don't have an answer.

Karen said...

I struggle with this too. I have knitting friends who see my diabetes tweets or FB posts or read my D-Blog, and they say things like "I admire how you are so positive although you struggle every day with diabetes" or "I'm so sorry you have to live like this, I will pray for you". And my first thought is to respond by saying it's not that bad and I'm fine, and you just get used to it. But then I think, is that really what I should be doing. It IS hard work - and we need the outside world to know that for so many reasons! Yet I don't want to be held up as brave or strong or struggling - I'm just doing what I need to do to live, just like anyone would do. It's a tough situation to figure out.

Scott K. Johnson said...

Great post Cara.

We do walk a fine line, don't we? We sometimes make it look so easy. That is good, because we don't need people pitying us or fretting over our every move. But it's also bad, because people don't realize just how much work it takes to live life with diabetes.

Very well said my friend.