Blue Candles: Is it time for our community to develop etiquette around them?

2065591First of all, the person who first posted a blue candle in honor of a person who loses their life to Type 1 diabetes is brilliant. Just about anyone in the D-world knows now, with a glance, what it means. And that’s what good symbols do: tell you something instantly and evoke an emotional response.

That said:  I’m worried. Because while the blue candle is haunting and beautiful, I’m worried about not what it but what we do with it is doing to our community. I think I have an idea. First, some background.

Blue candles started popping up on-line about three years ago. When someone would have a loved one or friend pass away in the D-world (sometimes from something related to T1D, sometimes not), they’d post a blue flame photo as their profile in that person’s memory. In turn, others in the diabetes community would post it as well, as a show of compassion and unity for that person, since we all see ourselves as family. Evocative, beautiful, special.

But as time went on, blue candles –with all the best intentions– started popping up in what I would suggest might be too fast of a time. Rumors, stories, fourth and fifth-hand information had people posting candles and sharing stories about a death at times accompanied the blue candle symbol. Again, done with the best of intentions, but not with careful thought.

And this past week, that action bit us. Someone posted a blog about a child dying of a diabetes related coma. The on-line community lit up in blue candles with posts like “this is so horrible,” “This is why I get up at night” and “This could be my child.” Parents cried and worried and vowed to try harder. Our community was terrified.

But it seems … the “death” was a fake. Someone preying on the weak played a terrible game, and kind of, sort of won. Because while they may have been called out and found out, they still managed to scare the bejezus out of thousands of parents.

Yet  …. We all had a role in that too. And I think we as a community need to take some responsibility for that spreading of unwarranted fear. Because really: so many, many, many of us took the word of the blogger as true and shared it far and wide the moment we heard. I get the reason – we were afraid and wanted to share. But it might just be time we all take a breath and think through some steps to take when sharing terrible, tragic and yes, important news.

Let’s do it like we do in the real world.

When someone passes away in our family, our neighborhood, and our lives in general, etiquette tells us not to share it until all the family members and close relations know first. We take a breath and give them the right to find out in a caring, private and sensitive way. Usually this is done by allowing a family spokesperson to share. Of course Facebook has blurred all this. Last week when our family lost my eldest daughter’s new father in law the night after her wedding, we realized quickly we had to make some calls and ask friends to keep things quiet until the family had the chance to reach every single family member. Thankfully, we were able to lock it down for a day until that happened. We did that because it’s the respectful, sensible and compassionate thing to do. Once we knew every single person who needed to hear this in a private way had heard, the family announced it on their official ALS support blog they’d be using for months. And then it spread on Facebook. (which is part of our reality now). It was well planned and compassionate, yet did not leave anyone out in the caring and sharing.

What if we did this with blue candles? What if the DOC waited for a cue from the family of the person who has lost their life to say “please post blue candles in their memory?” True, we could all still be fooled (sadly, you cannot stop crazy. Someone is always going to find a way to fool people), but at least we’d be doing the respectful thing in real cases: honoring the wishes of the family in an oh-so-difficult time.

Second, what if we did not share details on the person’s passing until a family spokesperson released them (either a death notice, a family blog update or just an official message from a family spokesperson that is to be shared exactly how it is written)? This would take away the possibility of folks posting blue candles combined with supposition.

Because here is the thing: while we really are a family here in the DOC, that sharing and that information is not ours to share. In fact, it’s really almost sacred and it belongs to the loved ones of the person who had passed away. We need to try to take a breath, grieve quietly and only share once those who are most related to the situation want us to. And here’s another thing: we in the d-world may not know all the details of the death. And that may just be because the family does not want to share. At least not yet. (and while you are patiently  waiting for the right time to share, there are other things you can do. Pray [if you are a praying person]. Reflect. Contact Michelle Allswager on their behalf. Michelle has taken her son’s unfair and untimely death and turned it into a calling to help others who experience a family member’s death from T1D She is at But try to hold off on the sharing until given the cue.

I understand the need to share and share quickly. First and foremost: We all care. We really, truly do. Second, we live in a world that thinks our loved ones diabetes can be fixed with just the right amount of cinnamon. We want to drive home our point: T1D is wicked, wicked challenging. So when someone dies, we think first: dammit, why can we not stop this and second: the world needs to get this. And we share with that in our hearts and minds.

But I believe if we could temper our sharing with some quiet patience, the amazing symbol the blue candle has become could become even more powerful, possibly less terrifying and in the end, the thing I believe it was created to be: a quiet yet powerful tribute to a life lost too soon.

What do you think?



 While we are discussing this: I love that someone came up with such a simple, smart, beautiful symbol that just plain works.

 But where is the one for D victories? What if every time someone scored a diabetes win (site in a new spot for the first time! State soccer champ goalie! Made Dean’s list! Went to first sleep over! Had a baby! Whatever – all despite diabetes!) we posted something to shout out that?

What would that symbol look like? It would have to have some blue in it, of course. But I’d love to see some ideas. And then I’d love to see that shared and those stories forwarded on Facebook pages all over. We’d all change our profile pics to the symbol in honor of a win – and folks in the D world everywhere would see it and instantly know someone is WINNING despite diabetes.

The only challenge is this: that new symbol would end up being all our profiles every single hour of every single day. Because every single hour – make that every single minute – someone is out there winning despite diabetes.

That would be a beautiful feeling to evoke though. Right? Come on, someone creative: create it!

18 thoughts on “Blue Candles: Is it time for our community to develop etiquette around them?

  1. blue glitter or blue firecracker (for a D-success)

    blue turd (for the other kind of D-experience)


    I missed the whole blue candle drama part of this hoax, and didn’t see the hoax blog until it had been revealed to be a fake. I felt lucky, because I would have felt so guilty for thinking the kinds of things everyone else was thinking. (Eg “This story makes no sense.”)

  2. I think this is a very good approach for posting/sharing blue candles. I saw the blog post in question and I was struck by the fact that I did not “feel anything” when I read it. I was starting to wonder if I am becoming desensitized to to these events, which was upsetting to consider. Thanks for sharing that it was false, now I know why I did not feel anything…my subconcious must have known it was not true.

  3. Agreed!
    I did read the blog – and like others, thought it sounded/read a little “off.” And that bothered me that I could be so critical.
    I was glad to discover that my sixth sense still works.
    I like your idea of waiting until some sort of confirmation or note from a family member is published by a trusted friend/relative.
    I was very impressed with how you wrote about the death in your family this week. That sounds odd, but your joy that he was able to participate in the wedding made me smile.

  4. I think a blue “w” would work. It looks “simple”, but its not…a blue “w” for winning, or 2 victories, 1 v for what was accomplished and the other v, because it was accomplished despite diabetes!! 2v’s = “w”

  5. My good friend – another Becky – started the Blue Candles when a friend from Children With Diabetes lost her wonderful Eilish to Dead In The Bed Syndrome. It was heartbreaking for the entire community to loose such a wonderful teenager.

    With that said, even my friend agrees that the Blue Candle Movement has gone too far. Every rumor lights up Facebook. I would love for people to verify the information, or to be personally touched by the loss – not just passing on information.

    Also, I always worry what seeing the blue candle on my Facebook page does to my Type 1 teen? How does that throw the fact that this disease does kill, in the face of my child?

    I am VERY relieved to find out that the loss if a 4 year old due to Type 1 is a complete fake. It was on my mind all weekend – that is a nurse checks at 5am and the results are good, then returns at 8am, I mean, what chance do I have? An overtired overworked mother?

  6. This was perfectly written. I have never been one to post the blue candle for that very reason: the candles go up, but I can’t find any actual information about the person in question. I did post a link to the blog this week in a discussion we were having, but I figured if it was written by the parent, it must be true! I agree, it even felt a little off to me. The details didn’t make sense. But then I thought to myself, “Why would someone make up something so horrible?” I am a naive fool.
    Thanks for writing this.

  7. I wrote and erased my comment here a few times for the fear of offending someone. All I will say is that we need to be careful how much we allow what we read online to affect our lives – especially someone or something that wasn’t part of our life only moments before – and really especially if we didn’t even read the thing we are sharing and/or taking to heart (as many admitted they didn’t – the faker was not that hard to figure out with five minutes of reading).

  8. Oh dear – I never knew that this blue candle thing went on. That may seem like a lovely idea, but those who are still working at this, trying their best — well, we have to worry about them. I truly don’t mean to offend anyone, but I think it must be doing more harm than good, isn’t it? Will seeing that candle help me do one bit better at what I am trying to do? I think it would make me feel defeated, overwhelmed or worse. Is that wrong? I’m sorry, but that is how I have survived…by only focusing on the victories. Yes, in a way by “keeping blinders” on, while doing my best. By reminding myself that the vast majority of TD1’s who do their best are going to not just live a long life and do every single thing that “normal” people do, but maybe a whole lot more. I don’t think we need something to increase our fear. It is fearful enough. And I think we need to focus on Becky’s teen, still trying. Makes it too easy to just throw in the towel, to think maybe no matter what I do I can’t win, I might just as well not try.

  9. I love this. For a number of reasons. First and foremost is it is about the value of the community. So is the side bar. The community matters and silliness only harms our community by the extent that we let it distract us from each other.

    You have inspired me to dust off and publish a piece I wrote about munchausen by internet the last time our community had an episode of this.Thanks for a great piece, thanks for the inspiration.

    1. Thanks! But …. I think my point with the sidebar was that if we stopped to think about it … victories flood our lives daily. Maybe I tried too hard to be clever saying that?

  10. I dont know how i feel about it. I understand how important it is to honor and stop and light a virtual a candle for those who have succumbed to this condition. But it is very heart rending to see.

  11. I don’t know how I missed this earlier, but I did. Anyway, I noticed the success idea you mentioned in your sidebar. I’ve been working on something for a couple of weeks, and I hope it pans out. You’re right– we don’t have a universal symbol of success, but we should have one.

  12. So beautifully written. Both myself and my daughter have Type 1. Every time I see a blue candle it shakes me to the core. I feel sick, afraid, and extremely sad. I have deleted friends from my Facebook page after they post the blue candle because I don’t want to see that. I am deeply saddened for families and their loss but I don’t want to be reminded every day how vulnerable we are. I want to remain strong and positive for both myself and my child. I want to see things that remind me how lucky we are. Thank you so much for posting this. I shared it on my Facebook page.

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