Wednesday, July 24, 2019

Could The T1D Community Have Done Better with Doreen?

If you dabble in the Diabetes community, online or elsewhere, you’ve probably heard of the whole Doreen debacle that happened this month. If not, I’ll try to explain as we go on. This topic came up in our social media panel at the Friends For Life conference by Children with Diabetes, and I instantly knew I wanted to expand on it.

Doreen is a woman who made a public comment on a South Florida food Facebook discussion page (click here to see comment) about her disgust at a man giving himself an injection and testing his blood sugar in a restaurant. Well, someone with T1D, or someone close to someone with T1D, saw it, shared it and it quickly went viral, sparking outrage among the DOC (Diabetes Online Community).

It blew up to the point that you’d see the controversy at every turn you’d make in online diabetes spaces. From angry letters, to memes, to people calling for her job, there was really no way to avoid hearing about the topic.

There is something beautiful about the Type 1 community. And that’s the fact that we tend to have a “You mess with one of us, you mess with all of us” mentality. We don’t let our fellow Type 1s get pushed around in any way, and if someone does something hurtful to people with T1D, no matter how big or small, it tends to cause a ripple effect throughout the community. And although it’s powerful and supportive, the way we can come together... it can also be scary.

If you’ve been in our shoes, maybe you’d know why we get so defensive. It’s hard to live with a disease that is so heavily stigmatized. For example, it seems that we’ve already moved on from Doreen as a billboard went up in Philedalphia that says “Today’s afternoon snack could be tomorrow’s diabetes.” This is such a tiny example of perceptions we have to deal with. It’s not fair in any way, and we feel a need to try to squash the stigma to anyone who will listen. Because we know how serious this disease is. We know that our fellow fighters are dying trying to take care of themselves. We know that in no way did anything we ate contribute to us being diagnosed, just that our immune systems decided to go on the attack and rob us of our ability to produce insulin (which we need to live). We know that there are innocent little kiddos being diagnosed every day, scared to death of the poking and prodding they need to endure every day to stay alive. We know better.

But a lot of people don’t. Doreen didn’t know better. Does that excuse her very rude and disgusting comment that she felt the need to make? No way! But we need to think about how we approach people like Doreen.

We came at her hard. Some people sent educational letters her way. People explained why that man was giving his injection, and why he should have the freedom to inject wherever he wants. And that is great. A large portion of the community did a wonderful job expressing to her the reasons why she was wrong, and why what she said was hurtful.

On the other hand, she is a journalist, and there were tons of people writing in to her employer calling for her job. People were harassing her family, wishing a diabetic coma on her, etc. Some were even threatening her life. And is this really how we want to represent our community, that we know is so special? Is this how we want to be seen? As an angry mob will ill intentions? As attackers instead of peace makers? As bitter people with a vendetta instead of people who really just want to be understood?

There is no doubt Doreen learned her lesson, and learned the hard way. Which some might still believe she deserved. But maybe next time we can do better. Because no doubt, there will be a next time. The fight for the world to understand Type 1 Diabetes is ongoing and our voices are important. But how we use them matters.

If we want to be respected, and if we want our voices to be respected, we need to do our best not to sound like a rabid, angry mob. We are a community filled with intelligent, passionate advocates, and we don’t need to use threats, name-calling, or fear tactics to get our point across. We are so much smarter, and so much more creative than that. Instead, like I truly believe the majority of the community did, we need to use education, and maybe even a little compassion, even to those who aren’t showing compassion to us. Because some people really don’t know any better. And it is in our power to change that. But if we’re being real, it is hard to sympathize with an angry mob.

So yes, it’s infuriating that this woman used the word “gross” to describe what we have to do every day to keep ourselves alive. It’s maddening, and the first we hear about it, it makes us want to snap. But when we take a moment to think about what makes the Type 1 community so great, and what makes it special... that’s what we need to hang onto when we react. We need to remember that just like we’re human, so are these people. People make mistakes, some far worse than others, but with help, people learn. There is no doubt that Doreen will probably be afraid every time she’s in public and sees someone with a Dexcom or an insulin pump. And I just don’t think that’s what our goal really was. We don’t want to be scary. We just want to be understood.

Monday, July 22, 2019

Friends For Life Orlando 2019

FFL green and orange wristband art by mom.

I’ll start off my blog post with the caption I wrote on my Instagram post this morning.

“Friends For Life feels like coming back home every summer and getting to see your family from far away after a long time apart. Giant family reunion. These people have such a special place in my heart and I’ve felt surrounded by so much love the last few days. And getting to meet new friends, and friends I’ve been talking to online for ages was so exciting. @cwdiabetes gives us the biggest gift of all and I will be thankful for them forever. I’ll get some more thoughts together for a blog post but for now, I’m leaving FFL with my eyes teary but my heart full 💚”

For those of you reading this who are hearing about Friends For Life for the first time, it’s a conference put on by Children With Diabetes. I’m talking about the Orlando one, which is absolutely HUGE, with over 2000 people, all who either have Type 1 (we wear green wristbands) or love someone with Type 1 (they wear orange wristbands). There are such fun programs for kids, tweens, and teens with amazing staff, and all kinds of sessions for the adults during the day. Some examples of the variety of sessions this year: “Diabetes Technology Update”, “Language Matters”, “How to DIY Loop”, “Avoiding and Overcoming Diabetes Burnout”... There are so many great sessions going on that it’s a challenge to choose which one to go to in each time slot!

This year, because of the bad timing of my open heart surgery, we didn’t think we’d make it to Friends for Life at all. Well, in the best plot twist, we did! We got there late. And 30 minutes before the session where I was going to speak on a panel! Just in the knick of time.

I had the pleasure of being on a panel discussing “Finding Your Tribe: Support & Knowledge in Social Media” with some of my favourite people; Kerri Sparling, Scott Johnson, Mary Lucas, and Cherise Shockley. We talked about all things from Instagram, Twitter, Facebook, and blogs, to Doreen, hashtags, the evolution of our online community. It was a really cool discussion and I’m planning on writing a more detailed post about it, so keep your eyes peeled.

Sitting on the panel with Cherise and Mary.

There is a team at Friends for Life that works really hard on figuring out what meals they’re going to serve us, and figuring out the nutrition facts of every single item so they can lay out how many carbs are in each thing and no one has to figure it out for themselves! It’s great for us adults, but also so nice for all the T1D parents who have to do all the carb counting for their kids! No guessing games. I think seeing the carb counts on the buffet is something every family there gets giddy about. All thanks to the nutrition team.

Then we have the exhibit hall, where different diabetes companies, organizations, research teams, and shops set up at booths. And let me tell you, it’s HUGE. There are also so many fun activities for the kids. From claw machines where you could win fun prizes at the Dexcom booth, to face painting, Mickey ear decorating, snow cone stations, ... half the fun is seeing all the kids running around having the time of their lives! Some of the bigger booths were companies Dexcom, Lilly, Omnipod, Tandem, Novo Nordisk. Then we had some amazing organizations there like Beyond Type 1, Diabulimia Helpline, and Padre Foundation, who are doing such important work! I was especially happy to see the Diabulimia Helpline booth, a booth dedicated to mental health, which was something new there and something that I think so many people need but are quiet about needing. Then of course we had our fun shops like Myabetic, A Tad Too Sweet, Pump Peelz, and Sugar Medical. Honestly, this is just a very tiny peek into what that exhibit hall holds. I wish I could name every booth that was in there because there were some really interesting things!

As you can tell, with all these things going on, everyone is running around trying to get somewhere all the time! So it’s so nice to have parties at night where we can all just let loose and have fun together, spend quality time, and of course eat good food. This year we had a family fun beach party, an adult party of the decades, family movie night, and of course the banquet which was a ball this year for the 20th anniversary. Fancy dresses and suits everywhere!

But what is at the core of this conference, what is in its essence, is love. It’s unconditional understanding of one another. It’s joy everywhere you look. It’s treating everyone there as if they were part of your own family. Because no T1D family leaves another T1D on their own. It’s tears of joy, and tears of relief, because you’re finally among a sea of people who understand your struggle. It’s feelings of pride, looking around you in awe seeing all these amazing and special people, and realizing that you’re one of them too.

Friends For Life is a gift that keeps on giving. Because the friendships and bonds formed last far longer than imaginable, and the lessons you take with you will stay with you for the rest of your life and maybe even change the way you live.

It’s so much more than just a conference. In a sea of green and orange bracelets, you will find a home.

Until next year, FFL Orlando. 

Thursday, July 11, 2019

Back From My Unintentional Break

Hi all,

It feels good to be back! On May 31st, I had emergency open heart surgery to remove a large blood clot from my right atrium. I'll definitely write about it but it's taking me a long time to get those words together. And well, it's quite the long story.  So that kind of knocked me off my feet for a while. But I'm back with what I feel like is a whole new perspective on life in general.

I wrote this in my Notes app in my phone a couple of weeks after surgery; "Something about having emergency open heart surgery makes you come to a screeching halt to re-evaluate your life."

I feel like it's impossible to go through something like that and not feel changed in some way. I'm not sure exactly how I'm changed, but I knew as soon as I was coherent enough after my surgery that life would not be the same from here on out. I was going to leave anything I was doing that was causing any stress or unhappiness in the past. I was going to live with purpose. I was going to be a better human. I was going to be a better friend.

Where am I now? Still trying to figure this all out. I've definitely taken a step back from some aspects of social media that I feel were unhealthy for me. What purpose am I living with? Haven't quite nailed that down yet. But I know I will, and it feels like I didn't get through all that just to merely "survive" through life, I got through it so I could LIVE. How am I going to be a better human? I think that we can all always try to be a better human. That growth is never ending. And as long as you acknowledge that you have room to grow and are willing to open up your mind and learn, you'll always have space to become a better human. So that goal is never ending, but I am definitely actively thinking about it more. How am I going to be a better friend? I haven't done as much of this as I would have liked to by now. Recovery has been slow and I feel like I've been an absent friend, far too quiet, which I felt like I was before too. I want to muster up the energy that I don't feel like I have, and be a friend who checks in. A friend who reminds the people close to me how special they are. A friend who lifts them up.

So, that is where my head is at. Actually, it's just a really small part of where my head is at, because let me tell you, it's EVERYWHERE. I have so much to figure out, but the good news is... I have time :)