Diabetic-Forum.net
Where to even start...?
And that is the point, you don't know where.
When someone is newly diagnosed with diabetes, where should their educational journey begin? Sure, there is the inevitable hospital stay, and the chat with a doctor, and possibly a self-injection tutorial (for the insulin requiring crowd), but what is the next step... after the hospital scene?
I remember sitting in my hospital bed and trying to wrap my head around the situation of being newly diagnosed. I couldn't let myself be scared because I didn't know what kind of situation I was entering. I didn't know what I should be afraid of, if anything. So I took it day by day, focused on the tasks at hand. Willing the needle into my stomach while the nurse coached me through, internally deciphering the odd feeling of a low blood sugar, calmly wondering what was next...
My journey started with the tiny booklets that I brought home from the hospital. I filled in the meal records and tallied up carb counts (actually carb exchanges at that time... which didn't last long), followed by insulin doses, and times. It was literally "by the book" at first. Then I ventured online to see what else was out there. And let me tell you, a lot of what's out there is very repetitive and dry. I finally got a more thorough perception of what I was dealing with when I stumbled upon personal blogs of diabetics, and entire online communities dealing with the topic of diabetes.
I finally got an overview of what so many people deal with every day. It helped paint a picture of what worked in the life of a diabetic and also what didn't work. All of which came from the virtual mouths of the people who experienced it every day. By seeing the individual routines, product viewpoints, and personal stories of these people, I was able to shape my own life with diabetes. And in many cases, the online community gave me a launching pad to further discuss topics with my endocrinologist.
Where does a newly diagnosed person with diabetes start? Tell me where you started.
And if someone close to your heart was newly diagnosed... where would you send them to be able to understand this disease and the daily upkeep of dealing with it?
A lot would depend on how close that person was to me physically, how comfortable s/he was with Internet use, how comfortable that person was with mainstream medical care (and/or how proactive s/he was with research and self-care), how well that person is able to critically assess health news, and how willing s/he is to "hit the ground running".
Obviously, if that person was close to me, I would let him/her know that I am open to discussing anything s/he might want to concerning diabetes. E-mail, phone, text, tweet... Sometimes a friend who's been there, or who knows where the ropes are, can help.
For someone who needs a lot of person-to-person handholding, I'd look for a good CDE and a local in-person support group. This is also important for a person who is not terribly proactive about researching the latest and greatest, and who may be a bit lax about self-care. Such a person needs some external accountability, and being accountable to a friend or family member can adversely affect the relationship.
That said, if the person lives nearby, I can recommend places to go for appropriate food, diabetes-friendly portions or service, etc. If the professional team and support group aren't there, I'm still (in theory) a short trip away.
If this person is comfortable with Internet use, I can direct him/her to relatively reliable technical online resources (dLife, Diabetes Daily, Health Central, WebMD) for health information (if s/he is proactive about that) and to online communities such as dLife Community, TuDiabetes, Diabetic Rockstar, and Diabetic Connect for overall support -- and to the d-folk on Twitter for 24/7 quick-response conversation.
I'd suggest that most newly-diagnosed diabetics sign up with Healthy Outcomes. While the available information there is heavily weighted towards sponsors/advertisers' products, the broad set of learning modules are short, simple, and to the point.
For people who are more proactive and who are better able to sort the wheat from the chaff, information-wise, I might also direct them to some of the more technical resources, such as Diabetes in Control, Endocrine Today, and the online abstracts of the standard group of medical publications (Diabetologia, Diabetes Care, JAMA, NEJM, The Lancet, BMJ, etc.) [Yes, I am well aware that this level of information is not for everyone.]
Again, "being there" and willing to discuss and guide is probably the most important thing I could do for a newly-diagnosed friend or family member. That's the road map and some suggested places of interest. Beyond that, they need to decide where they are going.
I have to agree with TMana. It all really depends on so much about the newly-diagnosed person and the resources that are available to that person wherever they live.
When I was first diagnosed, there really wasn't much of anything except the booklets and other documented information given to me by medical or dietary professionals. There really weren't any support groups, and the internet as we know it today did not even exist back then when virtually no one had a personal computer (although some people had an Atari game station that plugged into the television set).
Initially, when I was newly diagnosed with diabetes I thought it was a death sentence, and that no one would want me anymore. Like some Type 2's, I had an overwhelming sense of guilt, as if somehow it was my own fault I was diagnosed.
I went through all the phases of loss, including denial, fear, sadness, bargaining, and acceptance. At worst, I envisioned future amputations, dialysis, sores that won't heal, blindness, walkers, wheelchairs, dependence on other people to use the bathroom and the resulting humiliation thereof, exclusion from group activities, isolation, endless depression and even death. Worst of all, no more chocolate cake. I was 12 years old and had not developed an adult view of such things.
That was a very vulnerable state for me to be in, and such vulnerability had me focus only on the worst-case scenario, which after later rationalization I came to know that such things do not have to happen, and very likely will not happen, with proper diabetic management.
Nearly all support groups, books and articles I have attended or read about seem to focus much more on Type 2 than on Type 1. Not everyone goes through the panicking stage upon diagnosis like I did, but I suspect nearly everyone needs some sort of support initially. Medical and dietary professionals provide the information one needs to learn about, but they don't do so well with the emotional aspect. Not everyone will go on the internet to learn everything they can about diabetes, if it is not their style.
Here's what I would have liked to have, but didn't have, when I was first diagnosed.
* Personal therapy.
* Group therapy.
* Classes on diabetic management for MY type of diabetes (Type 1).
* Explanatory documentation to give to school teachers, the parents of freinds, etc., so that group "fairness" would not take priority over "medical necessity".
* Classes on legal rights of people with chrinic illnesses.
* A diabetes mentor.
* An endocrinologist, instead of a general practitioner.
* A support group for people in my age group.
* A psychiatric professional to explain what I as a child could not explain to my parents about their wrong reactions to my diabetes.
* The right to slap people in the face who accused me of "pretending" something was wrong to get "special" medically necessary needs met.
The original question was "Where does a newly diagnosed person with diabetes start?"
My answer, however simplified, is simply this:
No matter where you are in life, the next step you take is always the beginning -- just be sure to take the next step.
If you don't know how to take the next step, then ask someone -- because if you 'leap' before you 'look'... Splat!" :-)
Dantony C.
One thing that was useful for me -- but then again, I was an adult at diagnosis -- was having known someone who had lived many, many years with diabetes with no visible complications, and others who had lived with diabetes for many years with no known complications (we now know "senile dementia" as a symptom of Alzheimer's, and that uncontrolled high blood glucose levels can hasten the development of Alzheimer's) -- so I knew it wasn't an automatic death sentence. Then again, I knew people who died from diabetes piece by painful piece (but I also knew they did not take care of their diabetes). That put a lot of my future into my hands, and I could make the choice to live with diabetes, or to die from diabetes.
It's tough to know where to go and what to do. I work with the National Diabetes Education Program. Our website has some great free introductory material for people just diagnosed with diabetes and helping them setup a plan to help them manage the disease.
Check it out at http://bit.ly/dELhj
Ndepjohn,
Thank you for the interesting link to the webiste (http://bit.ly/dELhj) including introductory material for people just diagnosed with diabetes and helping them set up a plan to help them manage the disease -- I am going to add it to my "Favorites" and my "Bookmarks" lists and recommend it to others so that the information can be made even more available.
Dantony C.