Tuesday, February 11, 2014


It's interesting how people quickly can judge your situation. Living with type one diabetes isn't a cookie cutter diagnosis. People living with any form of diabetes are battling things that another type one has never encountered.  I find it amazing how strong the type one diabetes community is along with the supportive helpers that those living with type one diabetes have, including but not limited to parents of type one diabetic children.

But as much as us living with diabetes become defensive when others (non-diabetics) blame us for our disease, make jokes that are OK for us to tell but NOT OK for them to tell.  As much as we write blogs about the horrible neighbour who told you about a cinnamon cure or a new book she saw about eliminating diabetes.  We often hurt one another in our words or 'advice' that we give.

I see it all the time on the diabetes pages on Facebook. People trying to help each other out by giving advice on how to deal with a grumpy type one teen or whether or not to celebrate a dia-versary.  I think people mean well, actually I bet 99% of the people mean well, but we honestly can be damaging our own personal health by asking the community at times I feel.

It is incredibly easy to feel frustrated when dealing with diabetes and it is nice to have a community of people in similiar situations but I feel like the most important thing to remember is that sometimes people just need someone to listen and not to judge them. Heck, sometimes it is better to instead of giving advice just give a simple, "I think you're doing a great job and what worked for me was_____but it may not work for you."

In the past close to five years I have received advice as well as given advice. I admit that some of the 'advice' I received I deemed as trolling or that the person just didn't have the common sense to not press enter/send.  However, I think there are solutions to this to make sure that the parent who is frustrated with their type one child, doesn't become frustrated with the entire community because when a person draws away from something that they once felt was supportive they may never trust to return again.

So, next time you are on a diabetes community blog, Facebook page, forum etc.  please think about what 'advice' you're giving and remember that diabetes may be similiar logistically but in reality it is a different story for every single person.


  1. Going back to my earlier question I am just curious if you had ketones when you were dx'd ? There is a lot of confusion surrounding LADA, but the accepted definition is that it is slow onset type 1. if you have a lot of family history of diabetes in your family you might want to look into monogenic diabetes

    if you have three generations of diabetics in your family. They don't look at type they recomend you be tested for monogenic diabetes. Its free through the The University of Chicago Kovler Diabetes Center, and you do all the tests locally and the results are sent to them. So if one of your parents developed D, and one of their parents have D then it would be worthwhile looking into. Because having a diagnosis of monogenic is life changing and can mean a switch to pills. This is the case with certain types of MODY.

    I don't know if my comment was part of the subject of your writing. I was only curious bc I was dx'd as an adult and my family doctor dealt with it inappropriately. I could have died or developed brain damage as a result of DKA.

    Anyways keep up the good work, just think this issue might be worthwhile exploring in a blog article and with your doctor, it really stood out to me that you did not get very ill with ketones with the kinked mio. In my experience mio's kink bc they don't insert under the skin at all, they are actually sitting bent on the skin surface. Did you notice the adhesive was damp ? And did you see a red line on your skin.

    You are really lucky you did not go into DKA.

    You are doing a great job, I am just curious about this issue. We have 2 generations of diabetes, however, my dad is adopted and we don't know the family history.

    – medtronic veo occasionally with sensors (sof-sets and enlites)

    BTW its great that you are willing to put yourself out there and tell your story. you display a really good character

    1. Hey!

      No sorry it wasn't in response to your question! I just noticed a lot of issues with the online forums/facebook groups that I wanted to address.

      I will look into some of the things you mentioned. There is so much out there and to be honest I am not much of a medical person and focus a lot of my time on the emotional aspects of type one diabetes rather than other aspects. :)

      Thank you!


  2. Jill, I've have juvenile onset (type 1) diabetes since 1965 and I've never been in DKA, not even when I was diagnosed. My blood sugar was over 800. I've the only juvenile onset on both sides of the family in 6 generations. I have no complications. So there are some of us, who for some reason are a juvenile onset and don't follow any of the so-called medical rules.

    Kayla. I hope the facebook groups don't cause you as much pain and problems as they did me. I had to leave them because of how nasty they were. They just couldn't accept that I do things differently. Keep up the good work!