Tag Archives: diabetes online community

Clarifying Our Message as DOC Bloggers

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In talking with a friend recently, I thought about how bipolar diabetes blogs may seem to the outsider.  Often, in the DOC or Diabetes Online Community, people blog about how we are empowered patients, how we are happy despite our serious condition, how we like to be called “people with diabetes” instead of “diabetics”, and how we are lucky to have an illness that we can have so much control over.

On the flip side, it’s not unusual to read a diabetes blog that seems written for an audience who isn’t aware of the ins and outs of diabetes.  It’s common to read blogs about how miserable diabetes can make us, how our rights are infringed upon, how others aren’t sensitive enough to our plight, and how we feel like complete failures for living with a condition that is as misunderstood as it is impossible to perfectly control.

Many of us feel a need and an impulse to talk about our feelings on our blogs.  And since feelings come and go and their intensity ebbs and flows, this gives the appearance of instability.  The overwhelming majority of people who read diabetes blogs have diabetes so traditionally, this hasn’t been an issue.

Many of us also feel compelled to advocate on behalf of our condition and those who have it and therefore we write posts that are aimed at those who don’t understand diabetes and may need some educating and awareness on the topic.  And this works to some extent because family and friends who don’t have diabetes tend to read our blogs.

However, you can see how limiting this is.  Friends and family are already more compassionate to what we experience in life so who else is reading a diabetes blog to learn more?  A few doctors perhaps?  The newly diagnosed.

For those who start reading a diabetes blog without knowing much about diabetes, it’s understandable that the impression they get from the DOC is that “these people need to make up their minds!”  Are we happy and triumphant e-patients who are the boss of our chronic condition or the miserable and depressed victims of a terrible uncontrollable disease?  Well, we’re both and everything in between.

This is understood by me and all you other people with diabetes out there so it’s no biggie.  Except, lately, formal advocacy efforts and the media have both become very intertwined with us bloggers.  And I believe this means we need to amplify our awareness a bit about our writing.  We need to be very careful about how we say what we say.  Is this a drag?  Kind of, yeah.  But, with power and influence comes responsibility and as diabetes bloggers we are essentially representing other people with diabetes, disclaimer or not.

I don’t mean we don’t blog about what we want and say what we want.  But I think there are a few things we could do to help.  Here’s what I mean: (by the way I’ll be working on these myself)

1.  Be clear who your audience is.  Are you writing to those who don’t know about diabetes?  If so, make sure that’s clear to the reader.

2.  Be clear about which type of diabetes you’re talking about.  We need to ban together to make the types of diabetes more clearly distinguished by society.

3.  Before you publish your post, read it as if you were a newly diagnosed or the loved one of a newly diagnosed.  Do you feel like jumping off a bridge?  Consider adding a little something so the reader understands you and is put at ease.  Example:  Writing about how tired and depressed you are to be battling diabetes?  Think of one positive thing and add it.  It will help you and them.  At the very least make sure a reader can gather that you are simply expelling emotions that do not represent 100% of your emotional repertoire.

4.  Be careful about using absolute statements about diabetes.  It isn’t all good, bad, uncontrollable, controllable, easy, hard, always, or never.  If it is that way for you, preface with “I think” or some other sign of ownership.  Also, be careful with citing studies as proof for an absolute statement about diabetes.  Even studies are wishy washy.  They can’t help it.  We’re working with a zillion factors here.

5.  Be careful with causation and causality.  Learn the difference.  Just because your mom breastfed you and you still got diabetes doesn’t mean that breastfeeding doesn’t lower the risk for others-to the tipping point of them not developing type 1.  Just because someone is a thin type 2 doesn’t mean obesity doesn’t raise one’s risk for type 2 diabetes.  Just because someone is thin doesn’t mean they don’t have a high body mass index and aren’t clinically overweight.  When we say something isn’t true based on our very limited experience/knowledge, we’re not doing our community any favors.

I’m astounded by how bloggers are given more and more attention and opportunities to represent our community.  I think it’s fabulous.  I also think we could be a little more prepared so that when our time comes, we represent our community in the most helpful way possible.

Because working towards awareness, compassion, understanding, and a cure is something we’ll only achieve together.  And I know we all want those things.

Here’s a thought provoking post from Nathan of Edibles…The Diabetic Edition that I’d love for you to check out.  His insight helped spark the thoughts for this post.

D-Blog Day 2011

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The blog topic for this year is: Why you feel the Diabetes Online Community is so important? especially to you personally? Give examples of other diabetes involvement may you have, on or offline, how it helped you etc… How do you think “we” as an online community can band together to reach broader audiences to help even more people living with or affected by diabetes.

Diabetes is a disease that requires more management from the patient, than the doctor.  It would be impossible for me to call my doctor 15 times a day and have him help me make decisions on how and what to eat and how much insulin to give and when to give it.  I have to be able to do all that.  Because of this fact, diabetes puts an immense amount of responsibilities on the person who has it.  Out in the workforce, jobs with more responsibility typically pay more.  Diabetes doesn’t pay and it doesn’t necessarily play fair.  One can keep rather good diabetes control and still succumb to complications.

So due to all the above, a long term stress management solution and support system is in order.  One important aspect to that would be a community of people who listen to and support each other through their unique struggle.  The Diabetes Online Community gives people with diabetes a place to constantly connect and relate and get support and feedback.

For me personally, the DOC has been an amazing learning experience.  When other people share what works for them, I pay attention.  Every time I get feedback on a post, I am educated.  When others express different opinions, my mind is opened.  When it comes to my thirst to always learn more, the DOC is priceless and irreplaceable.

And then there are the people with diabetes I’ve had the pleasure to get to know.  It’s been so great to find friends who I can relate to AND who get what I’m going through.  I only wish we all lived closer to each other.  If computers died, I’d snail mail you all.

I think that we as an online community can reach more people by doing a lot of what we have been doing.  I think we need to walk the walk as much as possible.  We need to try and keep an open mind and avoid assumptions about each other.  We need to be bold and step out into our communities if we can.  Something I plan to do when my children are older is get involved offline and help those who are perhaps unable to get online much.  We can all do something to help, it just means recognizing our individual gifts and using them.  So many people in the DOC do just that, and it’s incredibly inspiring.

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