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 14^th 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.

Moving past the meh

Yesterday, I kicked butt and took names when it came to being active. I gladly jumped up on the treadmill and walked FAST and UPHILL for 30 minutes. I felt great!

Today, I ache all over and not because of yesterday’s exercise. Yes, I have a few sore muscles but that’s a good thing. No, I ache, like the flu. I’m finding it difficult to get out of the recliner and do anything. In fact, I’m so proud that I pushed myself to write this post. I seriously had to push myself. Sigh.

While thinking about the difference between yesterday and today, I remembered reading many, many times that some people just can’t make themselves exercise. It might be due to the boredom of the routine, it might be due to sore feet, it might be due to other chronic issues that cause pain. Whatever the reason, so many people just don’t exercise, often for very valid reasons.

The part of my brain that knows how much added exercise is vital to good health is balking at this realization. Why can’t I just go and walk? Why can’t others? It’s not that hard…and yet, it is.

Last week I had the privilege to participate in an online T2 summit. We talked about a lot of good things, including exercise. Kelly Rawlings reminded me that studies have shown that 30 minutes of exercise per day is beneficial, and that the exercise doesn’t have to be done all at once! Three 10-minute exercise session each day can have the same benefit as one 30-minute session. I knew that and yet I had forgotten. I’m always so focused on “get on that treadmill and WALK!” that I forget that I don’t have to put in 30 minutes in one stretch.  

So, thank you Kelly for the reminder. Today, I’m going to do just that. Three 10 minute sessions. I can do that. So can you. (And don’t forget to log your efforts at: http://bigbluetest.org/take-the-big-blue-test/ through 11/19/14 and help raise money for diabetes charities.)

Stem the Tide

November is National Diabetes Awareness Month. It’s a month when advocates try to raise awareness of diabetes, more so than the rest of the year. November is exhausting. Either you bust your gut trying to do more, advocate more, plead more, educate more…just more. Or, you do your usual thing, feeling a bit guilty that you’re not doing more. Maybe you don’t participate at all. Damned if you do, etc.

I’m always impressed by how certain people have a seemingly inexhaustible supply of advocacy energy. I wax and wane when it comes to my advocacy…and housework. Lately I’ve noticed more and more of my DOC friends mentioning that they’re a bit burned out. It makes me shout “me too!” but it also makes me sad. It reminds me of life in a small town: the same group of people are the ones who support Little League, do all the church work, organize bake sales for PTA and are scout leaders. Eventually they burn out and it’s left to someone else to pick up the reins. I’ve watched it happen here where I live and I know that it repeats itself across the country and the world. The DOC isn’t much different than a small town. It’s not surprising that people burn out; their throats sore from shouting into the wind. 

Those of us who have diabetes are very aware of it. We want others to be aware of it too so that perceptions can change, funding can increase and myths can be busted. The thing is that people don’t pay much attention to someone else’s disease unless it affects them directly. Why should they? Their lives are filled with things that matter to them and may not have the time/energy to truly care about diabetes. So why advocate? Why raise our voices to educate and inform? 

It’s hard not to be aware of diabetes these days because the media splashes the word about along with images of fat people and dire warnings of doom and gloom: lost limbs, blindness and worse. I mean, after all, it is an epidemic!!!!! This “epidemic” is mostly portrayed as something that can be prevented if we would just eat less and move more. That is insulting to all people with diabetes because it just ain’t true; not for any type of diabetes. It’s also dangerous for people who may someday be diagnosed. They may think that it won’t happen to them if they “just avoid sugar” and park at the far end of the lot. Usually the word epidemic scares people and might actually push them to do something. But the diabetes “epidemic” doesn’t seem to cause this panic. I think that’s because it’s felt that diabetes can be prevented and it’s our own damn fault. It won’t happen to me, surely, because…well, just because! 

This is why I continue to advocate for people with diabetes. 

Does being an advocate mean that I have to constantly work at changing people’s perspectives, harangue politicians to enact important medical legislation and write a blog? Does it mean that I have to up my advocacy efforts in November? Nope. I do what I can, when I can. Advocacy doesn’t have to be this big thing, it can simply be a matter of showing your friends and family what life with diabetes is like, with all its warts. 

I join my voice with others who advocate for people with diabetes. Together we can be like a huge moon that will turn the tide of this disease’s perceptions and outcomes. Yeah…that’s good. I can do that no matter what the calendar says.