Thursday, February 20, 2014

No More Shame

Miss Manners,

There's too much shame and stigma involved with diabetes. Some of it is external. Some of it is internal. But it is all very real to a person living with diabetes. People place blame on those living with diabetes. It must be your fault that you have diabetes. It must be your fault that your blood sugar is too low. Or too high. It must be because YOU did something wrong.

Being a vital organ is hard work. I wasn't cut out to be a pancreas. But I am. Every single day. But because I'm human, and because there are about ten THOUSAND external and internal things that I have no control over, diabetes can't always be perfect. I can't always have perfect blood sugar levels and sometimes I have to do things like test my blood sugar. In public.
GASP!

Heaven help the people around me that might see me test my blood sugar or give myself a bolus with my insulin pump (or an injection, if my pump happens to fail). I do my best to be discrete when I'm in public, but I don't hide what I'm doing.
I am a person with diabetes. I can test my blood sugar from six to twelve times a day. I can't always get up and escape to a bathroom. Even if I could, public bathrooms are disgusting and gross. In fact, I rarely use public bathrooms, unless I don't have an option. So why on EARTH would I test my blood sugar in one?

I am pretty open about my diabetes. I wouldn't have this blog, and be a member of the Diabetes Online Community (which I'm sure you didn't even know about until your recent response to a reader with diabetes) if I wanted to hide my diabetes. But I still have some shame.

Sometimes I feel like people think that I chose to have diabetes. Trust me, I didn't. Sometimes I see people stare at my insulin pump infusion site when I wear it on my arm. I want them to ask what it is, and not just stare at me like I'm a freak. Sometimes I wonder if they see the small lump under my dress that is my insulin pump or the small bump on my leg through my pants where I wear my constant glucose monitor. I wonder if they think I'm a spy or a secret agent wearing electronic equipment...or if they just think I have strange tumor like things growing on my body.

Diabetes is hard. Not only on your physical body, but on your mental state as well. After 28 years of living with Type 1 diabetes, I should know. I should also be over my self-consciousness and shame. But it still creeps in from time to time. That's why I do my best every single day to take care of myself. To not have shame for something I had no control over. And to help bust the diabetes myths that are out there. I don't want those living with diabetes to feel like they should be ashamed of ANYTHING.

Miss Manners, when you tell a PWD (person with diabetes) that they should check their blood sugar in an airplane bathroom, you're telling them they have something to be ashamed of. And they DON'T. Discreet, yes. Hiding it completely, NO WAY.

I'm tired of people being ashamed of their diabetes. While it isn't something to be proud of (who wants to be proud of having a chronic illness??), it IS something to be proud of living with successfully. I'm a person with diabetes. I'm living successfully with diabetes. No more shame, Miss Manners. The problem isn't with your Gentle Reader. The problem is with you.

Take a little while. Read some blogs. Talk to someone living with diabetes about what it's LIKE to live with a disease that never goes away. Maybe you'll be able to give some better advice to your next Gentle Reader.

Sincerely,

Cara (T1 diabetic for 28 years)

4 comments:

Anonymous said...

Bravo.

StephenS said...

Cara, thank you so much for sticking up for us! I appreciate your advocacy.

k2 said...

Brava, well done & thank-you!
Xoxo

t1dactiveliving.com said...

As I read your blog, I found myself saying, "yes! yes!" to so many of the feelings you shared as a person living with diabetes. I was diagnosed with type 1 diabetes in 2012 at the age of 29. The past few years have been extremely difficult, and as someone who is just starting to create a community of fellow diabetics in real life, it is so comforting to connect and find people online like yourself who just "get it". I have a really rough time with the idea of shame and feeling at fault. So, thank you. I added this blog post to mine. I created a list of all the blogs I found in response to Miss Manners just FYI. Have a great weekend and stay strong! We are all in this together to live a great and successful life :)