Why diabetes should not be a private disease
Is it such a terrible thing that Suzy from the office knows you have diabetes?
It is not my aim to abolish HIPAA, on the contrary I do believe that medical information should be private for obvious reasons. Mine is an empowerment argument however and is about the diabetic owning their disease. The practicality of hiding their diabetes from Suzy at the office and the reasons behind doing so and why it shouldn’t be the case.
Diabetes is not one of the sexy diseases, it does not evoke deathbed struggles and majestic triumphant ticker tape parades when one effectively controls its. In fact today’s societal myopic views on the disease built upon myths, lies and stigmatization has made it quite the shameful closeted disease to those diagnosed with it.
The first thought that comes to many when someone reveals they have diabetes might not be one of empathy but rather blame and this has to be one of the very reasons why diabetes is not worn as a badge of honor unlike other chronic conditions.
Diabetes is s very personal disease, I am not arguing this fact and whichever way one chooses to live with the disease is up to their personal beliefs.Yet more and more we need people to come out of the diabetes closet and help raise awareness and eliminate the stigmas associated with it. As the old adage goes, there is strength in numbers.
Now you might be asking yourself why am I being recruited into the cause? and what has the cause done for me lately?
Just remember this the more people believe that diabetes is a self inflicted disease, the more people think that there is a simple cure for diabetes the tougher it is to get to find a real diabetes cure.
Diabetes – what is it? Search for diabetic treatments at the following hospitals in Glasgow.
The catalyst for a diabetes cure is research dollars, these dollars drive many efforts into finding a cure for diabetes but to get there, perceptions have to change at the grassroots level.
It is not the most inspiring reason to come out of the diabetes closet but money makes the world go around and if you feel that this is not good enough of a reason, just remember what the ultimate goal in our fight is…
DIABETES AWARENESS=MONEY= DIABETES CURE
That being the why here is the how
If you want to share you battle with diabetes with someone beyond your close knit family, then you need to initiate the conversation.
This makes it your conversation to control up to and including your level of comfort with the information you are sharing. Answering questions might also help in dismissing any preconceived notions anyone might have about diabetes and most of all it helps spur dialogue in a positive way.
Remember to account for the fact that most people already have their own thoughts about diabetes, Good or Bad and be ready to hear some of these misconceptions explained, mostly in the lines I stated above.
So please share your story, it will surprise you the level of empowerment you achieve….
WELCOME!!
Amen! We have to rid society of this myths and degradation of those with diabetes. And to do that we must all share our stories.
Great post!
Thank-you for this post. I agree that we need to be open to encourage others to support diabetes research. BTW my diabetes has been out of the closet for years.
So true Ronnie. I used to hide my diabetes. I stayed in that closet for about 16 years, until last year when I decided to participate in Tour de Cure, that forced me to not only “come out”, but to ask for donations at work. My bosses, boss actually contributed!!!
After the Tour, I wrote an article about coming out with D. Once people at work saw the magazine, they all said the same thing “I had no idea”. They knew nothing of my taking six shots a day, testing my blood eight times a day, nothing of my daily struggles. Now they know what diabetes is, and what I do to control it. Many people thanked me for coming out and many that live with D came to me for support and advice. I hope more people share, it would help reduce all the misinformation that is out there. Great post!
The blame game is so bad that I was even attacked by a fellow diabetic when I turned to a message forum for help when my diabetes, which had been in very good control (A1c 5.2) for years suddenly exploded like a bomb with morning sugars of 300, no matter what I did or didn’t do, did or didn’t eat.
What it actually meant was that I needed to start insulin. Which I did, and am glad for. It has really helped a lot and I feel pretty good. But what I got — not from everyone, of course, but from some very self-righteous diabetics — was blame. “You had better get yourself in line because what you are doing to yourself will kill you,” was even said to me, by a woman who said that she kept her diabetes in line with no medication, a low-carb diet, and walking for an hour after every meal. Well, good for her, but to assume that I wasn’t apying attention to diet or exercise and to blame me for my pancreas finally giving out on me? Outrageous!
I figure if that’s what I get from fellow diabetics, I’d better be ready for twenty times worse from people who have never lived with diabetes. So far, I’ve only told a few people and, so far, the worst response I got was from a newager who told me that diabetes is caused by keeping secrets and asked me what horrible secrets I was keeping from the world, saying that I needed to confess them so I could liberate myself from disease. No thanks! Go read the National Enquirer if you’re that bored! My secrets aren’t that interesting.
But I’m planning to get one of those USB bracelets and it has a big, red cadeuceus on it, so I’m expecting more questions. And more harsh questions and statements from friends and strangers. And I’m okay with that. I’m looking into getting an insulin pump and even though I could hide it, I’m not planning to because I’m not ashamed of my diabetes. Gradually, I’m coming more and more out of the closet and I know there will be times when it is hard but I’m still looking forward to it as a chance to educate others and provide solidarity and a (hopefully) positive role model for those who might still be too afraid to say something about their own diabetes.
Honestly people do forget, even us that diabetes is a progressive disease, Last year was my year 13 and boom everything went haywire and now am back on insulin and am working my way back. Am sure you can find an ass in any setting diabetic or not, hope you told them to mind their own…. what I cant figure is how they didn’t understand the basics that diabetes is a very personal disease, what works for them doesn’t necessarily work for everyone else…. Thanks for sharing Sparrow
I agree about attempting to educate the public about how challenging diabetes really is. The problem is that most people who “know” a diabetic, especially in the adult population are thinking of someone who is a Type 2. They outnumber us by so much. The last statistic I saw was about 97%. Dieting can often reverse a Type 2 diabetes, so why would anyone want to donate for a cure? Its frustrating, But like so many things, education is the answer.
I have mixed feelings about telling people about my diabetes. I’m overweight and type 2 *though I suspect that I may be type 1.5*, so people automatically assume that I did this to myself. They don’t care that my mother who is not overweight has adult-onset type 1; so I have a gene for it. I’m not ashamed of the disease, I just hate arguing with idiots that think they are experts because they saw a story about diabetes on FOX news, beacon of accuracy that it is.
Thanks for a great post’
I can argue both sides of this debate
For the hide diabetes perspective its all about special treatment and the diabetes police.
As a teenager I was mortified when anyone dared give me special treatment just because Im diabetic. I was a strong determined young woman who got top grades, traveled the world and was fearless & independent.
I always felt the Special attention was an attempt to belittle my achievements
These days with the raised awareness of Diabetes and particular Type 2 – its the constant questioning of what I eat. Statements like – I suppose you cant eat that? I’m surprised you are allowed to eat that.. Why are you eating that?
I work as a consultant so Im constantly in touch with new people so its tiring after awhile justifying my own food choices.
On a good day Im all for education and awareness, on a bad day, I want to follow people around and question their food choices which are often shameless compared to my occasional treat.
On the other side, after 25 years of diabetes and occasional hypo unawareness, not telling people can potentially have serious side effects.
I think its a personal choice at the end of the day and whether you decide to be an advocate is up to you!
I see your point but the major reason behind these comments is ignorance, people just don’t know any better and the only way to reverse it is educate educate educate..