“Sharing” is Caring

12/21/18
WRITTEN BY: Alexi Melvin
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“To Share or not to Share?”

For those of us who wear a Dexcom CGM with the accompanying SHARE feature, that is the question that presumably runs through all of our minds at any given time of the week.

The ability to have other people alerted if something goes awry with our blood sugar levels is invaluable. But – that doesn’t mean that we don’t want to be a little discerning when choosing to whom we’d like to send that precious “invite” to follow us.

When the “Share” feature first became a thing, I was living alone in Los Angeles, while my parents were in the Bay Area. My mom was beyond relieved. She no longer had to wake up in the middle of the night, terrified that I might be too low or too high. She could now simply check her phone.

As time went on, though – more friends and family members saw how the Dexcom worked and thought it would be “cool” to follow my data. I started to become a tiny bit self-conscious about people being able to see my blood sugar level at any given moment – particularly if they had T1D themselves and could easily understand and therefore possibly be judgmental about my levels.

Cut to me a few years later, somehow lucky enough to have a significant other who wants to know everything about T1D, Googles everything about T1D, and always checks my Dexcom a handful of times per day. I am not proud to admit, I have purposely switched the “Share” option OFF. Usually only when my blood glucose level starts reading over 200 mg/dl with the dreaded “UP” arrow, because I so badly don’t want her (or anyone else) to worry.

(For the record… turning off sharing only pissed her off, which wound up being much worse than simply letting her see when my numbers are higher than I’d like!)

Ultimately, I always feel safer knowing that my loved ones can lend a helping hand much more easily if something were wrong, thanks to Dexcom “Share,” and the “Follow” app. And, being vulnerable on this very modern level has a way of illuminating “the good ones” in our lives, the ones who truly care.

I always wondered, though, if other T1Ds have the same thoughts about being able to share their data with others. So – I investigated. I spoke to Laura, Todd, Nicole, Keary and Zola about their very unique experiences with allowing others to see their blood sugar data, and even “following” others.


LAURA PAVLAKOVICH – Founder: “You’re Just My Type

What do you remember the most about your first experiences with the SHARE feature?

The very first thing I did after inserting my first Dexcom was add and follow my closest type one friends on the SHARE app. It was the most comforting thing to know I would have an extra set of eyes and ears on my blood sugars throughout the day.

How many people do you share your data with, and do you follow others?

I share with 4 people and follow 4 people. I definitely only share with people who I talk to on a daily basis and I consider close friends of mine. I would never share with anyone who I felt would judge me for what my blood sugars were.

Have your friends or family ever seemed irritated about receiving your alerts?

I did have one friend who after the first day, was so overwhelmed by the amount of alerts they were getting that they unfollowed me that night!

Describe a significant experience you may have had with the Share app where things might have turned out much differently had it not existed.

There are times when I don’t hear my low alerts going off at night. One of my closest friends who follows me made sure to put his phone number on emergency bypass on my phone, so that I would get his call even if my phone was put on “Do Not Disturb.”

This came especially in handy when there was a night I kept dropping, and clearly wasn’t waking up from my alerts because I was only going lower and lower. My friend called me over and over again until I eventually woke up and picked up the phone for him to explain that I needed to eat. There’s a chance I wouldn’t have woken up at all that morning if it weren’t for the SHARE app.

 

NICOLE MCGREEVY – Community + Social Media Manager: Beyond Type 1

Who were some of the first people you invited to “Share” your data with, and why?

The people I shared my Dexcom data with were my mom, my first friend I ever made who also has Type 1, and my closest friend at college! My mom has never been one to pester me about my sugars, so I felt comfortable that she would only message me if something seemed off for too long. My first T1D friend, Amy, I’ve known for 12 years and we shared our Dexcom data with each other. It’s a fun way to keep close since we live so far apart now.

I shared with My closest friend at college, Becca, because if something were to happen, she is actually the closest in proximity compared to my parents that if I really needed something and she saw the potentially dangerous trend, she would know what to do.

Were you ever self-conscious or skeptical about it?

 I had been terrible with testing my blood sugar on a regular basis prior to getting my Dexcom CGM that I have been really excited from the get-go to share with as many people who I knew were not going to judge me, but were going to help me. Although, I do find myself texting my mom telling her about a trend I do not like trying to explain myself before she says anything to me.

How many people do you follow?

Amy (first T1D friend)

Rachael (T1D friend)

Connor (T1D friend)

And I followed Josh (our Beyond Type 1 intern) when he ran the New York City Marathon – just to keep tabs on him!

Any particularly funny or light-hearted experiences you can remember that have come from sharing data?

This recent meme we made for Beyond Type 1 – I have never laughed so hard watching people’s reactions to it! A lot of people related, thank goodness! It was cool to see people being so honest about the fact that not every day is going to be a “good” day. Those blood sugar rollercoasters are REAL, folks!

 

TODD BOUDREAUX – Content Manager: Beyond Type 1

What do you enjoy about having a CGM? What was your experience like getting used to it?

I have lived with Type 1 diabetes for 18 years, and have had a CGM for only two of those years. I love being able to see the trends! In the past, I might check my blood sugar and see that it was 110 mg/dl and assume everything was okay — but that could be a 110, rapidly dropping or a 110 on its way up to 250. It’s a little like being able to see the future, knowing where your blood sugar will be instead of where it is. Getting used to the CGM was not too difficult, although I did find the alarms to be slightly annoying! I think that might have been a blessing in disguise though, because in avoiding the alarms I actually developed better blood sugar control.

What were your first thoughts when hearing about the SHARE feature?

“Too much!” I thought “This is great for parents to keep track of their kids’ blood sugars, but I don’t know anyone I would give that level of access to.”

What makes you uncomfortable about the idea of having people be alerted?

I have bad memories as a teenager of my mom constantly asking me what by blood sugar was. I would receive texts: “What’s your blood sugar?” Or if I was cranky, people would tell me to check my blood sugar. I’ve always viewed my blood sugar as personal medical information, not something for sharing. That being said, I am single, and I think if I were to get in a serious relationship then I would consider sharing my blood sugar with my significant other.

What is your “plan of action” instead of having people be alerted via the SHARE app in case of a BG emergency?

My friends and family members are trained on the symptoms of low blood sugars and know that my blood sugar is on my watch face. I don’t have a great plan for when I’m alone and have a BS emergency. If my blood sugar was dropping rapidly and I was worried I wouldn’t be able to bring it back up on my own, I would probably call one of my parents or 911. This is actually making me think I may need a better emergency plan!

 

KEARY CHENEY – Founder: Grace & Salt

(T1D & Mother of T1D)

What are some of the ways that being able to follow your daughter’s blood sugar makes your day to day routine easier?

Following my daughter, Zola’s, blood sugar from my phone has radically changed our lives. It has given me peace, and it has taken a huge weight of fear off my shoulders. It gives us insight that we never would have known without this technology. It has allowed me to sleep through the night because my phone will alarm to wake me if she is out of range. It has given us freedom.

Being able to see Zola’s blood sugar at any given moment from anywhere in the world gives us both independence. It has allowed my husband and I to leave her with a friend so we can go on a date, and it allows Zola to go to school without the crippling fear of something devastating happening to her because I can always see where her blood sugar is at.

Dexcom gave us our lives back and I am forever grateful for this technology.

Have you ever felt like you needed a break from the CGM, either for yourself or with your daughter?

It’s pretty rare that we ever want a Dexcom break. And if we do take a break, it doesn’t take more than a few fingerpicks to remember what a bad idea that was or how much harder blood sugar management is without seeing your numbers in real time.

Who do you choose to share YOUR data with, and why?

Zola and I both share data with my husband, Justin. This gives me piece of mind knowing someone else knows where my blood sugar is at all times, and since Justin and I are both the people who manage Zola’s blood sugar, we both see her numbers on our phone as well.

Does Zola want to see your data? If not, now — when she is a bit older?

Yes, Zola is always curious what my blood sugar is and we are often comparing numbers, using it as a tool to learn how various foods, activities, etc. impact our blood sugar. Once she’s older, I’ll download the Follow app for her, so she can follow me. But for now, her phone serves solely for the purpose of receiving data from the Dexcom G6 app and so that I can follow her data.

How have you used the share/follow features to share your story and experiences with social media, and what has that been like for you?

I love the Dexcom G6 and Follow app and being able to screenshot the app and use it as an educational tool to share on social media. One of my favorite features of the Dexcom G6 app is the “events” feature. This allows you to add in “events” into the app such as insulin dosing, carb intake, and exercise. This has been really helpful for us to identify where changes need to be made whether it’s adjusting timing of dosing, adjusting carb ratios, or seeing how different types of exercise impact our blood sugar in different ways (ex: The Dexcom taught me that cardio consistently lowered my blood sugar and weight lifting consistently raises my blood sugar. Because of this knowledge, I can now go into a workout and know exactly what I need to do in order to maintain normal blood sugar and avoid spikes or drops.)

And here’s a fun little tip:

Since Zola and I both use Dexcom, rather than having to open the Dexcom G6 app to see my numbers and then open the Follow app to see Zola’s numbers, I started “following” myself, so that now I can skip opening the G6 app, just open the Follow app and see both of our numbers on the dashboard at the same time.

Any crazy, inspiring or scary experiences you want to talk about when it comes to the SHARE or FOLLOW features?

I love that I can be anywhere in the world and still see Zola’s blood sugar at any given moment. When our family was living in Uganda adopting our kids, there was a time I had to fly back to the states for a week to take care of some adoption paperwork that couldn’t be done from Uganda. I cannot even begin to explain the peace that I felt being able to see Zola’s blood sugar from 9000 miles away. And if I noticed anything, I could text my husband to make sure he saw it. And my husband could do the same for my blood sugar. Talk about a blanket of security that wraps all the way around the world!


This article was published as part of a partnership between Beyond Type 1 and Dexcom.



Alexi Melvin

Alexi Melvin is a writer, artist and actress in the Bay Area. She also serves as a member of the Beyond Type 1 Leadership Council. Alexi studied at the New School University in Manhattan as well as the Lee Strasberg Theatre & Film Institute. She has written for multiple publications such as the San Francisco Chronicle and has been a regular contributor for Beyond Type 1 for many years. You can also hear her voice in two Star Wars films. She has been a loyal advocate for Type 1 diabetes awareness, education and fundraising since she was diagnosed in 2003. She hopes to continue to empower and be a voice for those who choose to embrace Type 1.