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If I Knew Then: Diabetes Blogging.

I wish I had known, at the outset, what a “blog” was.  When Chris suggested I start one back in 2005, the face I made was as though he had shoved a lemon into my mouth.  “A blaaaaahgg?”

I wish I had known that things like SEO would matter – not on the “I need more page views” sort of nonsense, but in terms of being found by the people I was hoping to connect with.  I started blogging in search of others who understood what diabetes in real life was like, and in starting that journey, I picked a blog title that took poetic license into account more so than SEO.  (I guess I should have included ‘diabetes’ in the title, but where’s the fun in that?)

I wish I had known how privacy concerns would change over the course of a decade. When I first started writing about diabetes, I wanted other people to find me, and I was happy to have my real name attached to my writing.  (I also didn’t know any better.)  Openly disclosing my diabetes was an asset in my pursuit of diabetes-related employment (leading directly to my job at dLife) and I was fine with being Googled.  But over time, and with the realization of how pervasive the Internet is, I wanted a less-is-more approach for certain topics.  Not everything needs to be shared, in particular moments where my family is concerned.  We have made certain decisions, as a family, but it doesn’t mean they are the right choice for everyone.  There is no “right choice,” – just varying perspectives and levels of comfort.

I wish I had known how much I needed to connect with peers who have diabetes.  I don’t know what it’s like for every person diagnosed with type 1 as a kid, but for me, there was this long period between diabetes camp and finding the DOC where I felt isolated and alone with diabetes.  I didn’t realize the missing link between “pursuing” and “achieving” my health-related goals was peer-to-peer support.  Having access to a community doesn’t make me like diabetes, but it does make diabetes feel less like something I’m inclined to hate.

I wish I had known there would be trolls.  And that they don’t matter.

I wish I had known how my writing would affect the people closest to me.  When I write about a low blood sugar that scared the hell out of me, I forget that my mother and father also read about that same low blood sugar, and it still scares the hell out of them.  My diabetes, though existing in my physical body, reaches out into my family and might scare them at times, too.

(To that same end, I wish I had known my mother didn’t know that I could pre-write posts and schedule them to go live at any given time.  For a while, my mom thought a new blog post in the morning meant I was awake and fine.  I hated taking that security away from her.)

I wish I had known there would be growing pains as the community expanded and grew in numbers, scope, and passion.  When the DOC was small, it was easy to know all the folks involved and for people to support one another.  Now, there are hundreds and hundreds of amazing voices and perspectives, and keeping up is damn near impossible.  Even the best feed reader and the strongest coffee can’t get me through everyone’s new updates, so I read as many as I can instead of reading as many as there are.  Sometimes I don’t agree with everything I read, but isn’t that the point?  For the community to expand my mind and my perspectives?  For the DOC to be the red pill?

I wish I had known that the community would be bigger than one state, or one country, or even one continent.  I wish I had known that I would find kindred spirits in London and Melbourne and Burlington.  I wish I had known that these people were there the whole time, living with diabetes just like I was, and that I wasn’t nearly as alone as I felt at times.

I wish I had known there would be a lot of people asking “How do I get involved?” Because then I’d be prepared to tell them that involvement requires participation.  You want to get involved with the diabetes community, online or off?  You need to put yourself out there, even just a little bit, and make yourself available.  Volunteer at local JDRF or ADA events.  If support groups don’t exist, start one.  If you want to become more connected online, go to where many people are connecting (try #dsma tonight, even!).  Start your own website.  There are many avenues for diabetes advocacy, and the need for your voice is critical.

But what I did know is that every voice matters.  And every voice has always mattered.  This community is huge and continues to grow because it needs to, and because there isn’t someone who tells the story of all of us.  We tell our own stories, and the power is found in the collective itself.  One diabetes blog or website or newsletter doesn’t define this community (there is no “blog of Sauron”… wait a second …), so share your story – please!  Raise your voice.  And maybe the difference we make can be felt in more that just our own lives.

 

9 Comments Post a comment
  1. k2 #

    Kerri –
    I LOVE, LOVE, LOVE THIS – And totally agree!
    Xo

    04/9/14; 11:45 am
  2. BA #

    I found your blog five years ago. At the time, I had been diabetic for two years, and I was home alone one night and a bit sad about still being diabetic, so I searched the internet for “type 1 diabetes blog.” I found your blog and it made me cry, but then it made me laugh and cry at the same time, so I was hooked. Now that I’m eight weeks pregnant, I’m back on your blog, going through your archive about diabetes and pregnancy. Thank you for what you do for our community, and for sharing your experiences so openly. I really appreciate it.

    04/9/14; 5:10 pm
  3. I love this, too. I’ve been thinking about how the DOC has just exploded – and that it’s difficult to keep up. And it’s wonderful!
    I remember asking you if I could list your blog on my blogroll.
    I worry about new bloggers feeling left out.
    I worry that I don’t leave enough comments on new blogs or old blogs – or that the comments I leave are not fun/encouraging/whatever. I loved my first comments. I still love comments.
    I laughed that your mom didn’t know about pre-writing. Neither did I, at first. I was quite in awe of all the people who were up so bright and early and posting a fascinating blog at 9am precisely.
    I gave a copy of your book to a mom and her 9 year old daughter this week. I know they’ll enjoy reading it and not feeling so alone.
    And the “not so alone?” That’s what it’s all about, right?
    I always forget to check the NOT a spammer box. Oh well…

    04/9/14; 6:29 pm
  4. John #

    I found your site, I think thru dlife, you were still unmarried at the time and I was about 2 years into the start of my dlife. For some reason your site filled a void that was missing from all the gloom and doom sites that were out there at the time. You were speaking about the happenings of living this life day to day and not regaling the dark side of diabetes. Which is their of course, but after being beat over the head with it almost constantly gets kind of old and depressing. But, you on the other hand were and are like the sound of reason, even though I cannot relate to your female ramblings, I can and do on the PWD side and somewhat on the parenting side. (my kids are all grown with families). I for one am glad that you started the blog and look forward to reading it. I can only hope that you continue, I know that it must be daunting at times, most things that are worth doing are, kind of like exercise. I suppose that I could ramble on, but will just end by saying a very big Thank You to you and you can thank Chris for me also, for suggesting this too you………….. :-)

    04/9/14; 7:57 pm
  5. Kerri, thanks for writing words, sentences and paragraphs that describe life living with type 1 diabetes. We share many of the same or similar emotions and experiences, although separated by more than thirty years and many miles. Your writing is filled with humor and encouragement and I hope you’ll continue to share your journey for many more years to come.

    04/9/14; 9:27 pm
  6. Kerri, You are awesome. Thank you for sharing. For putting a great, funny, caring voice behind so many of my thoughts and feelings. I agree with you, I often feel alone in my diabetes. Your blog has helped dispel some of that. Thank you, for being my ‘friend’ and not even knowing that I think you’re my pal! Someday, we’ll have some good laughs together.

    04/10/14; 10:17 pm
  7. I may have looked at your blog before but I didn’t become a regular reader until you were speaking at an event close to me.

    I’m struggling with privacy/openness because I’ve always kept my blog very private (few family details, etc) and I don’t always write much about diabetes. But our JDRF Walk is coming up soon and I’d like to post links to my team and encourage donating BUT that means the location/time will be open information on the *Internet*, ugh.

    04/11/14; 8:19 pm

Trackbacks & Pingbacks

  1. Around the Diabetes Blogosphere: April 2014 Edition : DiabetesMine: the all things diabetes blog
  2. ADA Tweet Up for DOC. - Six Until Me - diabetes blog

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