Monday, November 4, 2019

In Which the Diabetes Community Is Amazing, Except When It Isn't

People often look back on the day of their own diabetes diagnosis or that of their child as the worst day of their lives. However, if you dig down just a little, you can discover an amazing silver lining around the cloud of diagnosis: the diabetes community. The diabetes community is known as "the best club you never wanted to join."

We discovered that quickly when an old friend whose husband and two children all have type 1 drove over to our house the night Kittygirl was released from the hospital to give us a copy of her daughter's 504 plan so we would have something to work with when Kittygirl returned to school.

I quickly got on Facebook and found a local group for type 1 diabetics and parents of type 1 diabetics, as well as a slew of T1D parents groups with members from around the country and the world. These groups were invaluable at first as I had a lot of questions that either weren't answered well by our doctor and CDE or weren't true medical questions that needed an answer from a doctor or CDE.

Before someone is tempted to sue me, I should note that one of these groups give actual medical advice. They share things that have helped them or their children achieve more stable blood sugar, deal with the diagnosis, handle anxiety, etc. They can very helpful in particular for parents who are lost amid all the medical information that was thrown at them at the time of their child's diagnosis.

Initially, I found a lifeline in these Facebook groups. I found a lot of great advice on them and a lot of support and camaraderie. Sure, there was conflicting advice from time to time, but I pushed that aside. Over time, however, many of the groups started to annoy me and even cause me stress.

One group was staunchly against low carb diets for children and the admins were sure that anyone who did such a thing would stunt their child's growth. The same group promoted the idea that wild blood sugar swings are just a part of living with T1D and staunched anyone who wanted to talk about another way to manage the disease.

Another group, focused on a particular style of dynamic diabetes management that I won't name right now because I'll soon be writing a review of the book that informs it, seemed at first to be extremely helpful and right up my alley. However, the admins didn't accept the idea that the advice they gave wouldn't work for all kids at all times. For instance, when I tried to argue that, in my daughter's case, rice does not act like a fast acting carb that just needs a good prebolus but rather causes hours of high blood sugars that are hard to get down, I was shot down and told that there must be another factor I wasn't considering. The fact that I had experimented with plain white rice and had the same results was not considered. And don't even get my started on the bagel blood sugar debate. Suffice it to say that, if you didn't accept the word of the admins as the last word, there was little point in asking for advice.

A third group was my favorite for a long time, but I eventually got tired of all the extremely reactionary parents posting things like, "My child's blood sugar was 74 last night and I saved his life with a juice box!" 74, in case you don't know, is officially an in range blood sugar, though it is below the target of 80 given by some endos for children. Or people, years into diabetes, would post about how it had ruined their lives, they never let their children go anywhere, and they were terrified to even let their child out of their sight for fear they might have a catastrophic low blood sugar resulting in immediate death (severe hypoglycemia really can kill, but that's exceptionally rare). There were voices of reason trying to convince these parents that life could go on, but they were the exception.

I began to regularly complain to my husband about all three groups. The second group, in particular, caused me no end of stress because, though I faithfully applied all of their suggestions, I could not consistently achieve the smooth blood sugar graphs that they were posting. Mr. Engineer gave me an ultimatum: if I couldn't stop complaining about the groups I needed to leave them. I reflected on that and realized that my life would be a lot less stressful if I just made a clean break with all the groups causing me stress. I left every diabetes Facebook group (and I belonged to several I haven't mentioned) except my local one and one for the Friends for Life Conference, which is a benefit of the diabetes community for which I have not found a drawback.

The Friends for Life conference is sponsored by an organization called Children with Diabetes, but, despite the name, it is a conference aimed at people of all ages with diabetes along with their families, as well as being open to healthcare professionals who focus on diabetes.

The flagship conference, and the only one we have attended, is held in July at the Coronado Spring resort at Walt Disney World. Now, I'm a huge Disney fan, but the fact that the conference takes place on Disney property is only a tiny part of the amazingness of this event. I learned about FFL, as it is nicknamed, during the spring after Kittygirl's diagnosis and immediately wanted to go. Mr. Engineer talked me down and suggested we look into it for 2018. He took some convincing because the conference is expensive (scholarships are available), but we finally decided that just Kittygirl and I would attend in 2018 because the dates conflicted with Boy Scout camp.

I came in thinking FFL would be a good experience, but I didn't expect it to be as amazing as it was. The educational sessions were amazing and I learned a lot. Kittygirl had fund in the sessions just for kids her age and learned a bit. However, the very best thing was just the overwhelming feeling that we weren't alone in our journey with T1D. Everyone at the conference lives with T1D in some way, either as a T1D themselves, as the family member of one, as a healthcare professional specializing in T1D, or sometimes two or three of these. I've never been embarrassed about checking Kittygirl's blood sugar in public or giving insulin, even when she was on injections, but it does feel lonely sometimes being the only one who has to do that. At FFL, there are always several people at the table checking blood sugar, giving insulin, treating a low blood sugar, etc.

We even made a handful of "friends for life" at our first conference - people we're still in touch with regularly and eagerly looked forward to seeing in person again at the next conference. Kittygirl made two good friends - another girl with T1D and a girl who is the sister of a T1D. The former girl just happens to live in the same town as my cousin, and we were able to see her and her family right after Christmas of 2018.

Because of the expense, I had initially promised Mr. Engineer that I would not ask him to attend the conference more than every other year. I immediately went back on that promise upon returning from my first FFL. After much debate, and a stretch of caregiver burnout for me in the spring of 2019 (more on that another day), we decided just over a month out that the whole family would attend FFL Orlando 2019, which was the 20th anniversary of the original conference.

I was a little nervous that Squirrelboy would feel out of place as the sibling of a T1 and not a T1 himself, and the Mr. Engineer wouldn't love FFL as much as I did and think I had overhyped it. However, I had no reason for worry on either count. Both of them loved it. In fact, Mr. Engineer said he loved it a little too much because he didn't want to pay or take the vacation time to go every year, but he really wanted to go back as soon as possible. Squirrelboy had an amazing time in the teen track and one speaker in particular was a big part of the reason he elected to join the journalism club at school this year, which has been an amazing experience for him. In fact, Squirrelboy loved FFL so much he keeps asking when we can go back and is pressing us to attend the conference this spring in Indianapolis because the next Orlando conference conflicts with scout camp again.

Of course, the diabetes community doesn't only exist online and at conferences. We've also gotten to know a handful of local families with T1D kids. Some we've met at JDRF sponsored events. One I met through one of the groups I later left. Another we randomly met at the Y. My daughter noticed the other girl's Omnipod insulin pump and insisted that I had to meet her mom and set up a playdate. In addition, I've enjoyed reconnecting with my old friend (the one who dropped off the 504 plan late at night), who has given me lots of valuable advice from her vantage point a couple years ahead of me on the diabetes parent path.

If  you're a T1D or a parent of one and you haven't found your tribe within the diabetes community, in person, online, or both, I encourage you to reach out. Despite the fact that they caused me stress, none of the Facebook groups are bad in and of themselves. If you find a group you love and it doesn't stress you out, embrace that. If you meet another T1 family "in the wild," ask to exchange contact info, even if it feels stalkerish to you. The worst thing they can do is say no. Having type 1 diabetes or having a child with type 1 diabetes is hard and can be very stressful. The diabetes community makes it suck significantly less.


  1. Long before I had diabetes I was the child of a mom with diabetes. In those days (in the magical time called the 60's) my mom was the community go to person to use a sitter for T1 kids. Moms needed a day out, my mom took the kids. Moms and dads need to go somewhere, my mom took care of the T1. The young T1 had to stay home from school and their parents had to work(it was the 60's - well before family medical leave) kids came to my house for the day, week, or even in one case a few weeks.

    Over the years, I saw many faces of diabetes. A few I still knwo and love like bothers and sisters, and others, kids who drifted away.

    So yes, the thing is I also know the value of loving kids and parents. Not the tribal love that demands conformity, but the true love. The kind that says, lets help each other. After all all kids are worth it, and all parents deserve it.

    1. Wow, your experience is pretty amazing. If you don't already have your own blog, you should start one to tell these stories.


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