Today's post is not the one I had scheduled, but thanks to an article in my GOOGLE ALERTS, originally published in the Montery County Herold and reprinted across the wire and titled: "Living Well With A Chronic Illness Takes A Bit of Time." changed that.
The article starts by giving the reader the thesaurus definition of a Chronic Disease.
Chronic Disease : illness, sickness, ailment, syndrome, malady, disorder or complaint" that is "constant, unceasing, unending, continual, persistent, unrelieved, never-ending, ever-present or lasting." WELCOME TO MY WORLD.
The article goes onto say that says that 1 in 2 adults live with a chronic illness and refers to a Stanford University finding that " people with chronic illness get tired. They hurt. And they sometimes want to give up." Again I not only agree, but have experienced these feelings.
I was happy to see that statement in black in white, for all to see while drinking their morning cup of joe.
But honestly, you don't have to participate in a Stanford University Study to know that. Had the folks at Stanford talked to members of the Diabetes On-line community, they might have come to that conclusion sooner. Every day, pwds write about Diabetes guilt, diapresson, and the fact that we never get a vacation from living with our illness.
The same Stanford researchers found (and I'm paraphrasing here) that those patients who learned how to problem solve, (it's not clear what problems they were actually solving) communicate with doctors, relax, manage their emotions, and eat well improved their health and spent less time in the hospital than those patient counterparts who did not.
Not once did this article mention patients learning from other patients on how to deal with living with their disease, nor were patient on-line communities and learning tools such as blogs, twitter, webinars and other forms of Social Media and #hcsm ever mentioned. The same goes for the terms terms "empowered" or "ePatient" and that's a HUGE disservice to every single patient and or family member of a patient living with a chronic illness.
The article mentioned tips for living well with a chronic illness that include taking classes/workshops taught by health experts, re nutrition & their disease. Then the article makes a statement regarding diabetes that is true, but again, far from complete. " For example, a person with diabetes who learns how to control his blood sugar and blood pressure can often avoid other complications such as kidney disease."
Yes, the above is true -but as you and I very well know, controlling one's blood sugar isn't that simple. People with diabetes can do everything right regarding their diabetes, including counting carbs and becoming a human pincushion and their blood sugars can still decide to go all "Sybil" on them.
People with diabetes can be given all the tools to manage their disease (insulin, pills, SYMLIN, meters, test strips, etc) but if your not taught how to handle the emotions that accompany diabetes, all the fancy bells and whistles don't matter. People with diabetes will continue to get frustrated, tired, and depressed - And many will give up.
PWDs learn and find strength and become empowered from our patient peers -the same can be said for any patient living with a chronic illness.
While the media is starting to realize (and educate the public) that Chronic Illness patients daily struggles can take both an emotional and physical toll, they have yet to embrace and or spread the world about how new forms of #HCSM ( health care and social media) help all patients, chronic or otherwise.
Not only is this disappointing, it's downright unhealthy.
If your a person with diabetes new to the diabetes on-line community, be sure and checkout twitter #DSMA on Wednesday nights at 9pm eastern time and meet others living with diabetes - you'll be glad you did!