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Friday, March 13, 2015

Why the lack of support for people with Diabetes?

It is 2015, each and every year I am shocked at the lack of support many of us with Diabetes, in any form, do not get.  The medical field still doesn't have it right, they still don't test for it like they should and they are still telling people with type 2 Diabetes to test once a day or once a week or some terribly small number.

People are being misdiagnosed as type 2 all the time.  I read about it nonstop in groups.  What about all the people who are not in support groups, trust their doctors and go on thinking they are type 2 just because their doctor thinks they are too old to have type 1?

It drives me insane!

Public schools...almost none of them are willing to support the student with type 1 Diabetes, help their parents to have all the information they want to have about their child during the school day and some of them even go as far as to fight the parents about the way they and their doctor want their child's diabetes managed!   THIS IS 2015, this is insane!  Some of these parents even have to get lawyers involved, get the ADA involved, it is just completely insane.

Then there is the lack of support for anyone with Diabetes.  Cancer and Aids get more research, more support and yet Diabetes kills many many more people a year.

Here is a great example of what I am talking about: http://www.diabetesdaily.com/blog/2013/03/why-do-canceraids-get-more-support-than-diabetes/

It's true, if someone gets Cancer, their friends and family rally around them, that is great don't get me wrong, but get diagnosed with Diabetes a life long disease and you dont get any support for the most part from family, friends or your medical team.   UNLESS you have a great team that I have been blessed with--family and friends on the other hand--pretty much no support. 

The figures taken from that link:

Total (inc. Survivors)  Diagnosed / Year        Deaths / Year
Diabetes104,800,000  1,900,000         231,404
Breast Cancer2,900,000    200,000         40,000
AIDS1,148,200  32,000         15,000

Do you see what I am talking about?
To quote the article in part:
 "Then we get to the financial cost. The American Cancer Society estimated the annual impact of all cancers at $201 billion in the USA.  Diabetes costs an even more startling $245 billion. Diabetes is likely the largest single driver in the increase in domestic and global health care costs. These big numbers aren’t driven so much by daily treatments, although they can be expensive, but by the people falling through the cracks. Our biggest expense is not diabetes, but  untreated diabetes!

Yet when it comes to diabetes in our culture, we are surrounded by deafening silenceWe know that diabetes is hitting one out of every three Americans. We know the cost is bankrupting our health care system. Yet when you look at the media, the fundraising, and the research, so much of the awareness and visibility is going elsewhere, towards (worthwhile) causes like AIDS and breast cancer. Why doesn’t it get the attention it deserves?

Diabetes is a complex set of diseases – type 1, type 2, MODY, LADA. Diabetes kills when undiagnosed, untreated, misdiagnosed or improperly treated. It kills when the patient doesn’t have the support or education to self-manage. But even for those diagnosed, treated and educated, the road is difficult. What other disease requires 24/7/365 self care? Diabetes is a challenge that so few understand or appreciate on any level."

Why is there such a disconnect?  Why are so many medical professionals treating Diabetes with such disrespect? Diabetes needs to be respected, it needs to be supported by the doctor and the persons friends and family.  We (we being anyone with Diabetes) need YOUR support.  Diabetes is freaking hard, its hard to wake up everyday knowing you have to have the same battle all over again every single freaking day.  THEN you get bombarded by horrible HORRIBLE assumptions by the people you love.

We don't get any breaks from Diabetes.  Its long, its hard, its depressing, it sucks ass, we all hate it.  We need your support.  Diabetes for most people is NOT self inflicted.  I did not do ANYTHING WRONG to become a type 1 Diabetic.  I have an auto immune disease, my body attacked itself and I cannot do anything to reverse it. YET.  We need the monetary support that Cancer and Aids gets, we need a damn cure too you know?

I try my hardest to be a voice in the Diabetes community, to help rally support for people, help get proper information out there, advocate for the people who are not brave enough to speak up, brave enough to speak for that person that was just the victim of horrible assumptions and is so hurt they want to just give up fighting. We are the brunt of a lot of really hurtful words, it makes our every single day fighting this disease even harder to fight. Just because we have Diabetes doesnt mean we GAVE it to ourselves and it doesnt mean we don't need your support.

I have a hard time myself getting anyone to support me, people just ignore my posts on facebook about Diabetes, new research, new treatments, my Walk to Cure Diabetes that I have done for the past 4 years.  I cannot even get family and friends to donate a small amount of money. It hurts, I won't lie.

How do you guys feel about the support or lack of support you receive?

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