Tuesday, November 25, 2014

Battling stigma from without and within



I’m feeling a certain level of sadness and disconnect; a bit like I’m not one of the group. Due to the fact that November is National Diabetes Awareness month and November 14th was World Diabetes Day, this disease has recently gotten a lot of attention. This attention wasn’t just coming from diabetes advocates, but in the press as well. Unfortunately, some of those articles were poorly worded or lacked enough specificity and this made some folks unhappy. I have mixed emotions about that. I’m glad to see more mainstream coverage of diabetes of any type, even though some of it could be better. It’s improving, in my opinion. There seem to be more articles pointing out the fact that there is more to type 2 diabetes than gluttony and sloth. However, folks in the type 1 camp are unhappy because these articles don’t specify type 2. We’re all lumped together. 

“My child did not get his diabetes from eating too much sugar.” “Type 1 diabetes is not a lifestyle disease.” “I can’t cure my diabetes by avoiding fast food and eating cinnamon.”

Every time I read these types of statements, I cringe. Every. Single. Time. They’re all truthful statements but what they infer makes me feel…less. I feel as if fingers are pointing at me, blaming me for my disease. They often cause me to blame myself, even though I know I’m not to blame. You see, if I had eaten a healthier diet for my whole life I may not have developed type 2 diabetes until much later in life. Ergo, it’s my fault I have diabetes now. But it’s not my fault. Believe me, I did the best I could with four kids to feed and limited funds. We didn’t eat a ton of fast food, we ate “regular meals”. Times like these cause me to have self-doubt. My first husband was very critical of me because I struggled to lose weight. It doesn’t take much to start the downward spiral toward self-blame. Even a well-educated person with diabetes can fall into that trap.

More and more research is looking at why people eat such crappy diets, ie: addiction. Crappy diets are not something unique to people who develop type 2. The majority of Americans eat that way too. Research around the idea that type 2 may have come before obesity/overweight is more and more accepted. This research costs money and there is only so much to go around. Manny Hernandez, president of The Diabetes Hands Foundation, told me that even though T1s have all the awesome devices to help control their diabetes, the majority of research funding is spent on type 2 diabetes. THAT is why T1s are unhappy that T2s are getting so much attention, well one of the reasons.

Back to the cringing. I understand why people with T1 don’t want the world to think that they ate their way to their disease. I understand why parents of children with T1 are so protective of their kids and don’t want to be blamed for causing their child’s disease. I get it. I understand. I sympathize, no I empathize. I don’t want the world to think those things about me either and I cringe when other PWD or parents of CWD say these things because they are inferring that because I have T2 I AM to blame for my disease. They may not blatantly blame me or other T2s but there is stigma via inference. I cringe.

There are times, like today, when these feelings cause me to want to give up, to stop advocating. I get so tired of feeling blame and fighting against it. It feels worse than an uphill battle because it’s not only regular folks and D folks, but it’s the medical establishment as well. 

Maybe the point of this post is to just get my feelings out there, for someone to read and realize how it feels to be that person who has type 2; that person who feels blame and stigma even if it comes from within. The reality is that I will continue to advocate, not only for T2s but for all people with diabetes regardless of type. (Kelly Rawlings said, “If you have diabetes, then you’re my type”. I love that.) There will be days when I get frustrated and won’t participate but there will be days when the stigma and injustice will spur me to more action. I also need to grow a thicker skin, perhaps. 

Let me leave you with this thought: Defending yourself, your family, your situation should never be done in a way that casts aspersions on another person or group. Educating about diabetes should be educating about all types of diabetes. We all win if people have a better understanding of the intricacies of both diseases. “My child didn’t get his diabetes from eating too much sugar and neither did any other person who has diabetes of any type.” Think before you react to a myth or falsehood. Take time to form your response in a way that embraces all people with diabetes and, just maybe, others will begin to understand that diabetes is a complex disease and no one deserves to have it in their life.

5 comments:

  1. Great post Kate, and I'm sorry this has been happening to you. Just reading this has me thinking about how to best advocate for both me AND you. Happy Thanksgiving!

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    1. Thank you Stephen. I hope your holiday is wonderful!

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  2. You have just eloquently stated the reason why even though Type 2's make up the majority of diabetics, we are stunningly absent from the Diabetes Online Community. Thank you for your defense.

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  3. As always, beautifully written, Kate. You know that I think you are fantastic and I am so looking forward to spending some time in person with you this winter in AZ. An hour or two at dinner last spring wasn't enough!

    I hope that you, Ray, and your family have a wonderful Thanksgiving. Hugs, my friend:-)

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  4. Thanks for this, Kate. We diabetics have more things in common than things that separate us. None of us asked for this disease. We all have to make fundamental changes in our lifestyle in order to mitigate our disease. And if we don't, we all face the same long-term complications.

    Keep blogging, it's good to have a T2 voice in the DOC.

    -- Brooks (T2 like you!).

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