National Health Blog Post Month, Day 10: The future of online activism. Our favorite social media sites are constantly undergoing renovations to become quicker to navigate, easier to interact with, all encompassing, mobile, and everywhere. Imagine the same thing about your community – how will they evolve, improve, and grow?
The Diabetes Online Community (DOC) is growing. People with diabetes (PWD’s) are discovering that there are other people out there in the world and on the internet just like them, who know what they are going through, and who deal with the same things day in and day out.
According to the World Health Organization, in August of 2011 there were 346 million people worldwide who have diabetes. Most of those 346 million people have never even heard of a diabetes community, much less a community that is online, worldwide, and accessible at any time, day or night.
Last week there were 111 people involved in the weekly Diabetes Social Media Advocacy (#DSMA) Twitter chat. That is 111 people who either have diabetes or who live with and love someone who does. For every one of them there are millions more who are living with diabetes alone, with no support, no encouragement, and nobody to turn to who truly understands the daily pricking, poking, counting, injecting, and correcting adventure that is life with diabetes.
DSMA is not everyone in the diabetes online community, by far. There are a host of diabetes online gateways and communication forums, including Juvenation, Children With Diabetes, TuDiabetes, dLife, Diabetes Daily, and ACT1 Diabetes, just to name a few. (If you know of other online communities for PWD’s, please share them in the comments below.)
The point is that we, as a diabetes community, have a lot of room to grow. So far we’ve really grown organically, and often accidentally. Someone may be searching for something about diabetes and spot a link to a diabetes blog. From that blog they may find references to other blogs, different types of information, and maybe even reach out to an online community with questions.
Healthcare professionals need to better recognize that patient advocacy and support is not going to go away, and that it is not a bad thing, and encourage patients to get more involved with the online communities that are there for them. From those that I’ve talked to, the overwhelming majority of doctors do not like their patients getting information online relating to their health condition. Most doctors would prefer that a patient contact them directly for support. Meanwhile, these same doctors go to great lengths to remain incommunicado, often having an unlisted personal phone number, not sharing their email address, staying off of Facebook, and forwarding patient calls to voicemail instead of a real live human being after hours.
If you, as a doctor, expect your patients to look to you to be their primary contact for questions, then you must be available 24/7 just like the online communities are. Otherwise, change your expectations, because patients are not going to stop looking for the information and support that they need to live with their chronic condition.
I realize that doctors are cautious about patients contacting other people who do not know their medical history and asking clinical questions. It’s a valid concern, but it doesn’t cover the whole picture of what it is like sharing a world 24/7 with diabetes.
The Diabetes Online Community is about LIVING with diabetes. Our doctors and healthcare professionals play a critical role in our living with diabetes, but they are supporting cast. We, the people WITH diabetes, are the stars of the show. Doctors need to make sure that the patient views them as part of the solution, a partner, not some overbearing dictator of their health.
Diabetes is a chronic illness that requires people to manage almost all aspects of their disease independent of a physician’s watchful eye. We look to our endocrinologist, CDE, or primary care physician for overall guidance, but ultimately we are the ones taking action on all of the diabetes decisions we have to make on a daily basis. Nobody calls their doctor every single time they need to inject insulin. We educate, we calculate, and we dose accordingly.
The diabetes online community also provides something else that most doctors simply can’t, and that is time for the emotional side of the disease. We take time to get to know each other, and bond. Diabetes is an incredibly emotional disease, and the online community is more capable of providing support and encouragement and understanding at the point of need than any doctor’s office can, because those in the community deal with the same emotional triggers day in and day out.
If there is anything that I have learned about diabetes in my 30+ years with it, it is this: The only diabetes quick fix is glucose when you’re low. Everything else takes time, patience, and deliberate action to make it better. Having a community of people available who understands is the difference between thriving with diabetes and simply surviving with it.
This post was written as part of National Health Blog Post Month (NHBPM) – 30 health posts in 30 days: http://bit.ly/vU0g9J
This is also my belated post for dblog day 2011: http://diabetestalkfest.com/blog/?p=461
I am a new member of the DOC but a long time advocate whenever I meet a fellow T1 or T2 traveller. I’ve had T1 diabetes for the last 28 years and felt the only info I get is from a small group of friends and mostly my medical team. There are things I do to care for my diabetes that are “unconventional” – but then all PWDs have a similar take on their condition. I love having other peeps with the big D out there that I can share and care with. I have started a You Tube Channel as well – http://www.youtube.com/thediabetesproject
Lovely words – I think that there is too much stigma in docs being online as well as stigma regarding diabetes. “What if I say something and it’s construed as medical advice…and something happens to someone as a result?” kind of thing.
I will say that having docs who are comfortable with my online life, even if they are not online themselves, makes a huge difference.
Wow Martin – This is a beautiful post! I mean, I know I’m emotional about a whole lot of things (both related to & not related to diabetes). Thanks a million for mentioning the emotional aspect of living with it! The DOC is always my first stop for exactly this reason.
Knowing that we’re not alone is so important! 🙂
Love your line about the only quick fix. You’re such a born writer, M.
My post for today was really similar in terms of comparing our tiny DSMA gathering (that feels so huge when you’re in it) to the overall numbers.
It just makes you realize how far we have to go in order to offer support and education where it’s most needed.
Great post. Other communities include Diabetic Rockstar, Diabetes Sisters, F.A.C.E. Diabetes (not sure if that’s a community quite yet), Divabetic (more of an IRL community), Diabetic Connect. I did a presentation on Diabetes Online Communities back in 2009 and a more general one about special-interest social networks last Friday.