T1International Releases Important Statement on #insulin4all

This was originally published on the T1International blog on August 21, 2020. I am sharing it here today because it is incredibly important to me that you, readers of this blog, and the entire diabetes online community collectively understand how serious this matter is to me. I firmly believe that there is no place for bullying, hate speech, or disrespect in any type of interaction, regardless of when or where it takes place. It truly sickens me to think that anyone has tainted this hashtag with ugly personal attacks and I implore anyone using this hashtag to use it with the utmost respect and kindness – anyone who chooses not to do so diminishes the message behind this movement and harms the diabetes community as a whole. As for myself, I can promise you that as both the creator/writer behind Hugging the Cactus and as a T1International digital advocate, you can always expect me to interact with others in an open-minded, respectful, compassionate manner, no matter what.

T1International Statement on #insulin4all

T1International has been made aware of a recent increase in hateful speech, as well as disrespectful and non-collaborative behavior on the #insulin4all hashtag. While hashtags cannot be owned by anyone, T1International’s global work is tied to #insulin4all. As one of the creators of the hashtag, we want to acknowledge our concerns over these issues and set clear lines about what we stand for as an organization, and what we do not. We do not stand for or tolerate bullying, hate speech, abusive language, or words or actions that are intended to demoralize others.

The History of #insulin4all
The #insulin4all campaign was launched in the lead up to World Diabetes Day in 2014 by T1International and other organizations. Although World Diabetes Day began in 1991 in order to “draw attention to issues of paramount importance to the diabetes world”, the organizations felt that the true spirit of the day had been lost. The campaign was an effort to emphasize that people living with diabetes struggle to survive or face extreme difficulties because they cannot afford or access their life-saving insulin, blood glucose test strips, or basic healthcare. Others are caught in conflict or living in countries where there is little humanitarian assistance for people with diabetes. Many suffer complications and premature death without affordable or sustainable access.

The #insulin4all hashtag caught on quickly, and, in many ways it took on a life of its own. Advocates across the globe use the hashtag on various online platforms and in-person as a rallying cry to support their efforts to improve the lives of people with diabetes.

T1International’s #insulin4all Chapters
T1International’s USA Chapters and some of our Global Chapters have #insulin4all in their names, which reflects the grassroots nature of the movement and the volunteer efforts, though the Chapters are supported by the T1International Team. All Chapter Leaders and Leads sign an agreement to abide by our policies and values. Through this agreement, they are specifically required to act in a way that is respectful and that represents T1International in a professional manner, honouring T1International’s values and upholding the charity’s reputation. Chapter Leaders and Leads are also provided with guidance and tools for engaging in-person and digitally in ways that reflect the respectful, inclusive, and intersectional movement that we are collectively building.

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What #insulin4all Means to T1International
T1International sees #insulin4all as a community-led effort that is not solely focused on one person, entity, or country, but is a collaborative effort to bring equality to all people living with diabetes. This involves not only a fight for equality through affordable access to insulin, supplies and healthcare, but equity and inclusion when it comes to people with all types of diabetes, from all socioeconomic backgrounds, races and ethnicities, gender identities, countries of origin, and more. There is a lot of work to be done, and we believe in doing that work together wherever possible. We believe in doing it respectfully, transparently, and in a way that upholds our values.

The #insulin4all movement has built significant power, and there is a great need to use that power responsibly to advance the cause. When that collective power is focused on those responsible for the problem that have the power to fix it – that means Eli Lilly, Novo Nordisk, and Sanofi, along with other actors that want to profit on insulin even if it means people die because of its price – it is unifying for the community, and serves as a force for driving change.

When that power is focused on people who aren’t in a position to make change themselves as individuals – and especially when that focus intersects with other sources of power like white privilege, economic privilege, hetero/cis privilege, and other types of privilege – it ends up being a source of division and moves us further from our end goal of affordable insulin. Holding the Big Three and their executives accountable is categorically different from attacking individuals who aren’t in positions of power.

What #insulin4all Does Not Mean to T1International
As a small team of staff that are deeply committed to the values outlined, it pains us to see the hashtag and, thus, the affiliation with T1International’s name being used in harmful ways. It is worth reiterating: we do not stand for or tolerate bullying, hate speech, abusive language, or words or actions that are intended to demoralize others. Using the #insulin4all hashtag to attack people of color, members of the LGBTQ+ community, any marginalized group – or any person or group for that matter – is actively harmful to the movement. We do not believe in meeting problematic behavior with problematic behavior. We believe in calling out unhealthy or damaging behaviors – like the pharmaceutical industry’s price-gouging – in ways that are bold and that ignite change to improve the lives of patients, but are not vicious.

We hope that the #insulin4all community, and whatever it means to each member of that community, can come together over the shared aim of improving the lives of people with diabetes, starting with making insulin affordable and accessible to everyone who needs it. As the fight continues, we ask that our volunteers and supporters approach these issues with the same outstanding passion and commitment we see every day, while being open-minded and respectful in their approach.

3 Things I Learned From the Virtual Friends for Life Orlando 2020 Conference

This past week, I attended my very first virtual diabetes conference: the 2020 Friends for Life Orlando conference, hosted by the Children with Diabetes (CWD) organization.

Before I recap my experience, I’ve got to give a heartfelt round of applause to every single individual involved in the process of turning this in-person event into a virtual one. Between figuring out the technology and adapting the program to make sense in an online format, I’m sure it wasn’t easy, but the CWD staff and many volunteers made it appear seamless. While every conference attendee (myself included) would have loved to see each other in real life in Orlando for this event, it was the right (safest) call to make this conference a digital one. And the majorly bright side of doing the conference online was that more people were able to attend *for free* – literally thousands of people! Each state in America was represented, as well as dozens of countries. The massive turnout makes me happy as I think about how much more accessible this particular conference was to people with diabetes and their families around the world.

Moving along to…the actual conference!

Attending the Virtual Friends for Life Orlando 2020 Conference
All decked out in my conference gear – t-shirt, name tag, green band, and OmniPod, to boot.

It ran from Wednesday, July 14th through Sunday, July 19th. Given that I was away with my family for the duration of the conference, I knew going into it that there was no way I would be able to attend every session or social event. (I was by the beach for a week, so when given the choice between staying indoors or logging onto my laptop…need I say more?). However, I also learned pretty quickly that many of the sessions were going to be recorded and made available at a later date (along with a report summarizing the conference, which will be ready on the CWD site in early August)…so there’s a good chance I’ll refer to some of those recordings for the sessions I missed.

But in terms of the handful of sessions that I did make it to, there were some major takeaways I got from them. Here’s what I learned:

#1: There are some important steps that I (and the rest of the diabetes online community) can take in order to address underrepresentation within our community. In the last few months, issues of underrepresentation of people of color within our diabetes online community has gained overdue attention. Individuals and organizations are working hard to address this and make everyone’s voices equally heard. However, I’m sure that I’m not the only person who felt helpless when trying to figure out how I, as just one person, can make a tangible difference. During one of the conference sessions that I attended, I learned that there are actual a few simple steps that I can take that will make a big impact over time: Follow social media accounts run by people of color. Amplify their voices by sharing and highlighting their content. Support and listen to their experiences as non-white individuals with (and without) diabetes. The bottom line is that everyone deserves to have their voice heard, no matter what, and our community must come together in order to help make this happen. It’s an uncomfortable truth that these representation issues exist, but it’s one worth acknowledging and doing everything within our power to fix it.

#2: Diabetes care and management comes in many different formats, and what works best for one person should always be respected. Of course, I’ve always known and believed in this, but this notion was reinforced for me during one of the sessions that I attended. I can’t remember the exact context, but it was brought up that sometimes people who choose to manage diabetes with multiple daily injections (MDI) take a little heat from people who use insulin pumps. In other words, those who prefer MDI might get pestered and questioned by this choice, which is unfair because it’s a very personal one. It reminded me of how I refused to even contemplate an insulin pump for nearly two decades of life with diabetes – I was so ardently against them for no real reason other than I just preferred my MDI regimen. But then when I did switch to a pump, I was instantly converted and I can’t really imagine going back to MDI. So when I saw a lot of MDI-ers reminding the rest of us that pumps aren’t for everyone, I remembered that diabetes care and management tools aren’t always high-tech (and that doesn’t make them any less effective) and that devices shouldn’t be pushed onto those who get by just fine the old-school way. At the end of the day, we’re all doing our best to take care of our diabetes in the way that’s right for us, and we should always remember that we’re in the fight together.

#3: Our community is strong, resilient, and adaptable – the virtual format didn’t put a damper on anyone’s enthusiasm. It was truly incredible to see how much energy every speaker, staff member, and attendee had for the event. You could practically feel it radiating through the computer screen in some of the sessions! Diabetes forces us to make decisions that are tough sometimes. It throws curve balls in our paths and we must find a way to deal with them, and we always do. This collective tenacity totally translated to this conference as we embraced the virtual format. It was heartwarming to see photos all across social media throughout the five days from attendees and speakers alike showing snippets of their at-home conference experiences, and I loved how everyone had so much spirit for the event. I admit that I even got up and danced  (to several songs) when we had our virtual banquet on Thursday night. I gladly draped the tablecloth and fairy lights I got in my BoFFL (Box of Friends for Life, a package I got in the mail last month containing swag from conference sponsors that was available to the first 500 conference registrants) to really set the mood as I ate dinner “with” diabetes community members across the country and ’round the world…and smiled widely because my T1D mom was able to experience it with me for the first time.

So yes, while it’s a bummer that I didn’t get to hug so many of my friends from the diabetes online community or meet new ones for the first time in-person, I’d say that the virtual conference exceeded my expectations in terms of what it delivered using the available technological resources and passion from the community. Hats off to the sponsors for doing what they could to really engage attendees, and another extra-special kudos to the staff, volunteers, and speakers who pulled off yet another amazing conference.

It just makes my anticipation for the next in-person one that much greater, knowing how wonderful it will be to see everyone in-person again.

“My Black Diabetic Life Matters” – A Post by Sydnee Griffin

This post was originally published on the T1International website on June 15, 2020, and is written by Sydnee Griffin. I reached out to Sydnee and asked if I could re-post it here because Sydnee’s words opened my eyes to the medical side of racism and the importance of supporting my Black friends (and all Black voices) with and without diabetes. Thank you for sharing your story, Sydnee. 

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“Follow and highlight local Black and non-Black POC on social media. Listen to their stories, speak out and support them.”

My diagnosis story is so similar to numerous other type 1’s, I almost never tell it. I had the weight loss, the extreme thirst, the irritability, and the constant hunger. Paired with abdomen pain that was similar to that of menstrual cramps, all of these things signaled ‘puberty’ to my 16 year old brain. I had been living with the discomfort for so long, it was no longer new to me.

I remember a handful of things about being admitted to the hospital and the time I spent there. The first is the hospital staff telling me if I had gone home and waited for the test results to come on Monday, I probably wouldn’t have made it through the weekend. The second is the amount my family needed to advocate for my care during my stay. From the office of my primary care physician to the hospital itself, my mother had to speak up in order for me to get the treatment I needed and in a timely manner. Though the initial night of the hospital is fuzzy, I remember my mother going back and forth with the ER technicians imploring that I needed to be put on an IV ASAP. She noted that I had lost significant color and all of the questioning could be done while I was hooked up. The back and forth seemed to go on for hours. When I left the hospital I remember wondering, “Why did my mom have to beg those people to do their job when I was visibly sick?” A few years later after I had dealt with numerous visits, checkups, and insurance calls, I became aware of the medical side of racism.

A quick Google search will take you to a few sites that define the term medical racism (i.e. racism and prejudice that carries over into the medical field) and even more articles about the instances occurring. What do Beyoncé, Serena Williams, and I all have in common? We all have experienced medical racism that could have easily cost us our lives – and so have numerous other Black people. It’s one of the things I don’t share with my white friends that I’ve made online who have type 1 diabetes.

Another occurrence I see fairly often with my non-white friends with diabetes is questioning over their diagnosis. My friends who look like me are familiar with the question, “You’re type one? Are you sure?” This is a question that my white friends are rarely ever asked. This is because type 2 diabetes is more prevalent in communities of color, but also because type 1 diabetes organizations and type 1 diabetes social media accounts often promote the image of the skinny white kid as the face of type 1 diabetes.

I recently made an Instagram account to help connect with others living with type 1 diabetes and to become a face of the community. Before I got involved, the biggest thing I noticed was the lack of Black representation on diabetes Instagram. There are a handful of them that I follow, and it’s great that they’re there – but I had to scour Instagram for them. So even, as they exist, they’re not getting nearly the same amount of attention or recognition as their white counterparts. And it’s easy to say, maybe their content isn’t as engaging (you’d be wrong, but let’s entertain the idea!) – you mean to tell me not a one of them is as popular as your local white type 1 blogger? I can search through the hashtag #t1dlookslikeme and not find a single Black person under the “popular” posts.

These are the things that contribute to both misdiagnoses in the doctor’s office and stigma outside of the doctor’s office. These are the things that need to change and the things that we can change that don’t involve getting a degree in medicine.

How can we change them? For starters, follow and highlight local Black and non-Black POC on social media. Listen to their stories, speak out and support them. Right now, I’m seeing a ton of white people with diabetes online who are complaining about people wanting them to speak up on the protests and police brutality occurring now. Some see their account as something that’s only for diabetes content. Hearing that is really disappointing, as I’ve pointed out to quite a few of them. Because I’m Black and diabetic every day.

I have to worry about police brutality in addition to blood sugars and health outcomes. So when they tell me they don’t think the two are related, or “diabetes content” it really shows me where their head is at. It is a privilege to solely be marginalized with your one disability. I have had to grapple with myself as a Black person about whether or not I am doing enough with signing petitions and donating, because I can’t be out protesting due to living with diabetes and COVID-19 still being prevalent. It is a privilege to not have to worry about diabetes and COVID-19 and a privilege to not have to worry about being racially discriminated against in a healthcare setting or any other setting.

To my Black diabetic friends – I am here online if you need an ear, or support, or help in any way. Please don’t feel like you’re alone. We are here, we are strong, and we aren’t going anywhere. For anyone looking to get educated right now, myself and lots of other Black social media users are posting helpful resources on how to donate and support even if you’re immunocompromised.

Don’t think that you as a white person or non-Black POC need to necessarily make a statement. There are tons of Black voices you should and can amplify in this time. We are similar in so many ways when it comes to this disease, but we are also different in so many as well. You have Black friends. You have friends with diabetes. Both see you when you don’t support them. They notice as you advocate for affordable insulin to save their lives, but don’t declare that their Black life matters. You need to know their lives are in danger in more ways than one. Support them through this like you would support them with any other diabetes related struggle.

27 Acts of Kindness: Days 15 and 16

We’re entering week #5 (or is it 6?) of work-from-home life here at Hugging the Cactus.

Truth be told, I’m feeling a bit burnt out this week.

After a decently nice weekend, I entered Monday feeling rather…blah. Which was annoying because I’ve actually kind of enjoy Mondays recently.

But rather than embracing this one with open arms, I treated it more like Garfield the cat would…ew, Monday again.

The bright side was that I still had acts of kindness to do that will surely make my week better as it goes along.

Monday, 4/20 – Act of Kindness #15: I texted a friend today. This friend is someone who I usually only talk to in group settings, but because I know that the individual has really been struggling lately, I wanted to let the person know that they’re on my mind (again, keeping it kind of vague here on purpose to protect this person’s identity). We ended up making plans for a virtual tea party later this week, which I know will be mental health bolster to us both.

After exchanging just a couple of messages with this friend, it dawned on me just how important it is to check in on our family and friends – not just during the hard times, but also on a regular basis. Because who doesn’t like knowing that someone is thinking about them? Or that someone cares about them? I think that a lot more people struggle with feelings of loneliness than we might realize, so if sending a thoughtful text or picking up the phone to call someone is all it takes to make a person feel a little less alone, then it’s a small gesture that could have a big impact on the well-being of many.

Sunshine
In other news, this adorable little sun makes my day so much brighter…and I hope that I help make the days of others brighter, too.

Tuesday, 4/21 – Act of Kindness #16: In keeping with my “checking in” theme, I decided to combine that with my appreciation for the talented bloggers within the diabetes community. There are just so many awesome blogs out there that I don’t get to visit often enough! So I spent a portion of my Tuesday afternoon catching up on blog posts from various members of the DOC from the month of April. After reading them, I did my best to leave comments on each post because as a fellow blogger, I know how much I enjoy it when I receive comments on my writing. It’s always a good feeling knowing that someone out there cares enough to read my ramblings, so I figured other bloggers might like getting a note on their most recent posts.

While I was reading and commenting, it also occurred to me that I could review one of the diabetes podcasts that was kind enough to have me as a guest a couple months ago. I left a rating and a review on Apple podcasts for This is Type 1, and hopefully, the hosts will see it and it will make them smile.

I’ll wrap up today’s blog post by sharing the blogs I visited and left comments on, because I think you should check them out, too!

Ally’s blog: Very Light, No Sugar – “The Sugarhouse”

Frank’s blog: Type 1 Writes – “Insignificance”

Renza’s blog: Diabetogenic – “A COVID-19 food post not about banana bread”

Tracy’s blog: Sugarcoated – “A Westworld of Our Own”

Rachel’s blog: Yoga for Diabetes – “Rest, restore, and get creative”

Briley’s blog: inDpendence – “Details. Lots of ’em”

Colleen and Jessie’s Podcast: This is Type 1

Have You Heard About “Ask Me About My Type 1”?

You should definitely know all about “Ask Me About My Type 1”, the podcast, by now.

And no, it’s not just because I appeared in a recent episode (although I totally did, and if you haven’t listened to it yet, keep reading for a direct link to it).

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The podcast’s logo!

Let me tell you the reasons why I think you should know about “Ask Me About My Type 1”:

  • Readers of this blog know that I like to spread the word when I try or experience something great within the DOC. I want others to see how awesome that person or thing is, too, so that’s why I’m talking about the podcast in this post.
  • There’s like, a lot of T1D podcasts out there. Way more than I ever realized or expected. How the heck are you supposed to find out about them? Why, word of mouth works wonders! I know there are a couple of podcasts that might be considered well-known, and these podcasts deserve it…but so do the podcasts that are lesser known. Especially “Ask Me About My Type 1”.
  • This podcast really resonates with me because the focus of every episode is different: If you have a special interest within the DOC, such as marathon training, then you can bet that there’s an episode on the topic. You can also be sure to find episodes on subjects that you never really knew about before, such as politicking with T1D, taking dietary supplements as a T1D, and sex/love/dating with T1D (ooh la la). The show’s host, Walt, goes out of his way to find people within the fabulous diabetes community who offer different perspectives and insights on just about every aspect of life with diabetes, which makes the entire podcast truly important and meaningful.
  • Speaking of Walt – he’s the host of the podcast and he’s a great guy with a story of his own to share. You might recognize him from Team Bike Beyond, but besides being a mega-skilled bike rider, he’s also an incredibly talented podcast host. He asks thoughtful questions, blends his own narrative into every episode, and puts an obvious amount of time and energy into making all of his episodes. When he interviewed me and my friend, Emma, for the show, we honestly forgot that our conversation was being recorded because he did such a seamless job moderating the discussion. That’s a quality that not every podcast host has, and Walt (modestly) rocks it.

Those are just some of the reasons why I’m a firm believer in this podcast (and again, let me emphasize that I am not saying all this because I was a guest – at the end of the day, I truly just want others to know about DOC gems that I’m aware of because I have gained something positive from them).

So now I bet you’re just wondering how you can start listening – and I’m here to help! Simply search for “Ask Me About My Type 1” on Apple podcasts, Stitcher, Spotify, or just about any other place you can listen to podcasts. Check out an episode on whichever topic intrigues you the most and I can guarantee you’ll be back for more. Keep up with Walt and new episodes of the show by following @askmeaboutmytype1 on Instagram and visiting his website here, too!

Oh…and here is the link to my episode, in case you were holding out for that (wink, wink).

Do We Take Medical Technology for Granted?

Before I dive into this post, I want to make it abundantly clear that I don’t know the answer to this question. I’m not judging how anyone reacted during the recent Dexcom G6 outage, nor am I stating that there was a “right” or a “wrong” way to handle the situation. I merely think it’s important to ask ourselves questions like this when things don’t go according to plan with diabetes care/management.

Alright, now that I’ve got THAT out of the way…

Capture
Many variations of this graphic have floated around the Internet in the days since the outage. I am not mocking anyone by posting it here; rather, I am using it as an example of ways in which we cope with diabetes difficulties. This example, to me, is an attempt at using humor to deal.

For the last several days, the DOC has been in a bit of a panic. And when I say “bit” I mean “a helluva lot”. That’s because the day after Thanksgiving, Dexcom Follow stopped working. This means that parents/caretakers who rely on the technology to monitor their child’s/loved one’s blood sugar levels were left in the dark. It sparked confusion, outrage, and downright fear, all of which only seemed to intensify over the weekend and into this week when the problem was only partially solved for most users.

Rather than coming together to support one another, the DOC swiftly divided into two camps: The first consisted of individuals who sought to gently remind others that this technology is still pretty new. It hasn’t even been around for two decades. That meant that for many years before then, people with diabetes were doing things the “old school” way, and getting by just fine. Doesn’t this mean that we should all be able to make it through unexpected technology blackouts, knowing that we have our blood sugar meters to fall back on?

The second camp was in a greater fury over the issue. This camp relied on the Dexcom G6 system because those within it simply didn’t know a life without the continuous glucose monitoring technology. For them, the outage was a bit like asking them to Google something without access to the Internet – it’s pretty much impossible, unless you’ve got an Encyclopedia handy. Oh, and it’s MUCH higher stakes, because people who don’t recognize symptoms of low or high blood sugar need this technology to work in order to stay on top of fluctuating blood sugar levels. Let’s not even get into how much is PAID for this expensive piece of medical equipment…one would argue that the high cost of supplies means that the technology should work at all times, no matter what.

If you’re like me, you can see that both of these groups have perfectly valid points. I’ve had diabetes long enough that I didn’t even use – and didn’t see the point in using – continuous glucose monitoring or insulin pumps until a few years ago. I took care of my diabetes the old fashioned way growing up: doing fingerstick checks multiple times per day, treating low blood sugars with 15 carbs then waiting 15 minutes, checking blood sugar levels about an hour after injecting insulin to make sure highs were coming down the way they should. This way of handling diabetes worked for me for a long, long time…throughout elementary, middle, and high school, right up to college.

Then I got a continuous glucose monitor (I believe it was the Dexcom G4) just before starting my freshman year of college. And I haven’t really been without a CGM device since then. It’s changed my life and helped me navigate adulthood with diabetes. Whenever I do experience periods of the technology not working the way it should, it’s infuriating because I feel like it’s not worth throwing away buckets of cash on it in those periods of inconsistency and inaccuracy.

But here’s what I’m wondering, as a result of this Great Dexcom G6 Outage of 2019…do we take this technology for granted?

Do we truly appreciate the times that it works the way it should?

Do we expect too much from something that, technologically speaking, still has a long way to go in terms of working perfectly?

Do we rely too heavily on continuous glucose monitors to provide us peace of mind when, in reality, they simply provide us with real-time updates of our blood sugar levels (i.e., it’s a stream of data)?

I don’t have answers to these questions. I can reflect on my own answers to them; furthermore, I can ponder how and why the DOC gets so divisive in these times where we should try to come together, listen to (and learn from) differing perspectives, and figure out what we can do to best support one another during trying times.

 

Thank You

Today’s blog post is intended to be short, but sweet: I want to take this as an opportunity to say thank you.

To my sweetie,

 

Since I published my post last Friday about being “dia-feated”, a dozen or so members of the DOC – and even a couple nonmembers – have reached out to me via social media to share their words of encouragement with me:

“…I enjoy your blog posts and your voice is important to me”

“…your blog reached one person, and that’s enough (for me)”

“I read your blog all the time, and it helps me.”

Each message expressed similar sentiments using different words: Don’t give up. My voice matters to someone.

Again, the intention of that post was never to drive traffic to my blog or messages to my inbox. I was merely trying to express some sentiments that I’d been feeling for a few weeks now. But the fact that so many people DID, in fact, take the time to reach out to me and exchange a few messages with me meant the world. I found each one to be uplifting and truly touching, and if you were one of the individuals who wrote to me, I can’t thank you enough.

It’s funny – but truly wonderful – how kind words from friends and strangers alike can do so much to revitalize your soul and make you see what’s right in front of you: an amazing, supportive community who just gets it.

Thank you.

Why Online Communities Aren’t Always the Best Source of T1D Support

Before I jump into this post, let me make this unequivocally clear: The DOC (Diabetes Online Community) has been an incredible source of support, advice, and education to me ever since I discovered it (roughly seven or eight years ago). This post isn’t necessarily about the DOC; rather, it was inspired by a recent experience I had with a totally different online community. But what I’m about to say here can be applied to just about any kind of virtual support group in existence…

In addition to the DOC, I consider myself a member of a few other online communities. One of them is focused on fitness. (I’m not going to specifically name the group here, mainly because I’d like to maintain its privacy as well as the privacy of its members.)

Anyways, said group was formed to provide members with a place to post about their respective fitness journeys. Members are encouraged to post daily about their workout routines, nutrition plans, and any emotions that might arise as they work toward building a healthy lifestyle. It’s common for members to interact with one another and show support when someone is struggling, as well as applaud victories big and small as they’re met. Unsurprisingly, negativity and criticism aren’t welcome in this group, as it can be detrimental to the goals that each member has for himself/herself.

Thanks for the love!

In keeping with the spirit of the group, I posted a photo a few weeks back of myself (making a grumpy face) after a particularly challenging cardio workout session. In the caption, I wrote: “Excuse my pissed off expression…I had to cut cardio fix short because my blood sugar was getting too low. Only worked out for about 20 minutes this morning. I really wanted the full one cuz I treated myself with food just a tad too much yesterday…but I don’t totally regret it because it reminded me that I just don’t feel good when I snack unnecessarily. I’m always struggling to remember to only eat when I’m hungry or if my blood sugar is low, not because I’m bored or emotional. I know one day I’ll fully accept this and practice it!”

I wasn’t seeking sympathy or anything, I was just being honest with the other members of the group and channeling a bit of my frustration. Regardless, a few people did comment on the post with some reassuring words, like “you’ve got this”, “thank you for sharing”, and “one day at a time”, which I appreciated.

But what I did not appreciate was the comment thread that followed and involved myself and two other group members (my thoughts as I initially responded to this chain are denoted by asterisks):

Group Member #1: Oh no, be careful! Do u usually run low?
Me *Not wanting to dive into a long explanation*: I’m pretty well controlled for the most part, but exercise can make me go low sometimes! 
Group Member #1: do u have diabetes?
Me: yes, type 1 diabetes for 21 years now
Group Member #1: oh wow! Be careful!! Do u carry glucose tabs with you?
Me *Rolling my eyes as I respond, and adding a “haha” to keep it light*: of course! Haha I’ve had T1D for a very long time so managing it is second nature.
Group Member #1: okay good! Just making sure. Sorry, this was the pharmacist in me asking (an annoyingly cute monkey-with-hands-over-eyes emojis PLUS smiley face emoji followed this comment)
Group Member #2: The nurse in me wondered the same. 🙂
Group Member #1, responding to Group Member #2: haha! (followed by a stupid heart emoji)

What exactly is my issue with this thread? It starts with the “be careful”. It was probably an innocuous comment on the poster’s end, but I thought that me telling her that I’ve had diabetes for 21 years might signal that I know a thing or two when it comes to managing it. It also mildly irked me that she was qualifying her comments to me by saying that she was a pharmacist. That’s great and all, but that doesn’t make her an expert by any stretch of the imagination on diabetes…same thing to the girl who also chimed in by saying she was a nurse.

Now, you might be thinking that I’m overreacting to this whole thing – and part of me agrees, I’m sure that both girls just had pure intentions and wanted to offer support in their own ways – but if that’s the case, then this is a perfect example of how things can get misconstrued in an online setting. My interpretation of this thread is that both girls were trying to tell me that their expertise in their respective fields meant that they knew a good bit about diabetes, and rather than come off as supportive, the comments felt like show-offish (like, oh, look at me and how much I know!) and as if they thought I couldn’t take proper care of myself. Again, my interpretation may or may not be true, but it’s fact that we all need to be careful when choosing our words in situations like this. Even better, when something isn’t totally clear, we can choose to say nothing rather than chime in with a comment that might come off wrong or sounds misguided.

With that in mind, I now get why some people say that online support just isn’t for them. Personally, though I appreciate and like being part of online communities, this experience did teach me a lesson about being careful with my interactions in these spaces, and that I should always try to remember…it’s impossible to gauge tone/emotion in the comments section, and coming across as a know-it-all isn’t a good look on anyone.

The DOC: The 24/7 Support System I Never Knew that I Needed

I’ve lauded the DOC (Diabetes Online Community) time and time again for connecting me with individuals globally who are also affected by type one diabetes. And I don’t foresee an end to my desire to express gratitude for this amazing community, because over and over, members of it continue to blow me away with their words of encouragement and gestures of friendship.

My latest wave of gratefulness was spurred when I arrived home from work on Monday to a cheerful, Tiffany-blue envelope waiting patiently for me to open it. It was a delightful little package from my friend Sarah, who I “met” via Instagram over the summer. Besides diabetes, we share common interests in fitness, wellness, our pet dogs, and bright colors, among other things.

Sarah went out of her way to mail me a few goodies (shown in the picture), including a cute T1D key chain and an adorable cactus card with a message of support written inside. I was incredibly, pleasantly surprised by all of it. It wasn’t about the material items for me (though they are totally my style, and I can’t wait to make use of them). It was more so how she took the time to put it all together for me, cleverly incorporating some of the things that introduced us to one another in the first place, that really blew me away.

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Sweet trinkets from a sweet friend!

It got me thinking about the larger diabetes community I’ve met and harvested friendships with in the last several years. And as hard as it is for me to properly describe the level of richness, knowledge, and support that those friendships have given to me, it’s beyond easy for me to say that I am infinitely thankful for all of them, and I hope that in return, I am able to offer at least a fraction of the same to others.

With all that said, it’s even more mind-blowing to me that I resisted this community for such a long time. For the first 14 years or so that I lived with diabetes, I rejected the notion that I needed peer support to help me manage the emotional and physical aspects of diabetes. I turned down offers to go to diabetes camp. I didn’t interact with the only two other diabetics in my school’s district because I feared social isolation. In some situations, I even pretended that I didn’t have diabetes, because my yearning to be normal like everyone else overpowered my need to make my health a priority.

That’s why I don’t think it’s a coincidence that things started to turn around when I met other T1Ds my age. That marked the point where I could have open, honest conversations with others who were going through similar life events at the same time as me, without the judgments or criticisms I may have had to endure if I had those same conversations with family or doctors. While I know that I need to give myself and my personal growth some credit for improving how I manage my diabetes, I would be remiss if I did not also attribute some of that credit to the members of the DOC who have made meaningful contributions to my life and my outlook on it.

It’s funny that something special in the mail made me contemplate all of this, but Sarah’s thoughtful package to me is a tangible representation of how connections within the DOC have changed me for the better.

Thank you, Sarah, and another big thank you to those of you in the DOC that I have met, as well as those I have yet to meet.

Memory Monday: That Time I Created a Diabetes Lesson Plan for Middle School Students (Part 2)

One Monday per month, I’ll take a trip down memory lane and reflect on how much diabetes technology, education, and stigma has changed over the years. Remember when…

This is a continuation of last month’s Memory Monday, in which I reflected on what it was like to work on a diabetes-oriented community action project when I was a freshman in high school. There were two main components to my project: running a School Walk for Diabetes, and educating a group of middle school students on type one diabetes.

Ugh, the thought of presenting to a group of middle school kids horrifies me now, but I guess I wasn’t so afraid at the time – you know, because I was a cooler, older, more sophisticated 14 year old lecturing the immature 12-year-old children.

*I’ll pause to allow you a moment (or several) to laugh at that mildly ludicrous notion.*

The easiest part of prepping to talk to the students was devising a lesson plan. My project partner and I put together a beautiful slideshow (complete with Comic Sans font, how professional) that we would use in the first half of the presentation. During the second half, I would show the students all of my medical equipment and demonstrate things like priming an insulin pen and testing my blood sugar. We also provided students with examples of healthy snacks for a person with diabetes and when to eat them. The formal presentation would end with us giving students the chance to ask questions.

Sounds pretty neatly put together for just a couple of freshmen, right?

Turns out, it really did go over well with the students! There were a couple technical difficulties (blast those LCD projectors), but my partner and I knew our presentation like the back of our hands, so nothing deterred us from accomplishing the goal of our lesson plan: for the students to have a greater knowledge of diabetes.

We felt like our hard work was worth it when we received completed evaluation cards from the students. We’d asked them to tell us: 1) The best part of our lesson, 2) The worst part, 3) Rate it on a scale of 1-5 (1 being worst; 5 best), and 4) Write one fact about diabetes they learned. Our average rating wound up being 4.2, which made us feel like rock stars! All these years later, I still have some of the best comment cards preserved in a binder about my project:

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Personally, I really love how one student thought that diabetes is spelled “diabedes”. And I’m amused by how another student didn’t seem overly crazy about the PowerPoint (it must’ve been that damn Comic Sans font that ruined it).

But joking aside, this whole project still resonates with me ten years later because I think it marked the beginning of my passion for diabetes advocacy. It was one of the first times that I willingly shared my diabetes with others and let a real conversation take place about it with no holds barred.