Tag: diabetes online community

Battling ‘Betes

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One thing that I love about Hugging the Cactus is that it encourages me to check out other diabetes bloggers’ content. It may be more difficult to come by these days, as most diabetes content on the Internet can be found on Instagram and TikTok, but I’ll always enjoy the written word format (and can definitely appreciate the time and energy put into a single blog post).

Plus, I’m always struck by how other diabetes bloggers are able to articulate some of the complex emotions around diabetes, in ways that I’ve struggled to do but certainly have been able to relate to.

Take, for example, Renza’s recent post about her personal battle with diabetes.

I won’t do it justice – you should really read the full post here – but in sum, Renza talks about how words that invoke battle are used widely across the diabetes community (think “warrior”, “fighter”, “army”, “challenger”, etc.). We are asked – no, demanded – to wage a war against diabetes in rhetoric all over the place, meaning that we must always fight to maintain “ideal” blood sugars, A1c, time in range, and all the other numbers associated with diabetes. But as Renza puts it, no matter what the metrics may be, diabetes remains. There’s no way to defeat it, which makes militarized language around the matter that much more infuriating and paradoxical. What a massive burden to place on the shoulders of a person living with diabetes, to ask them to fight with all their might against an enemy that can’t literally be defeated…but one that perhaps is open to a resolution of sorts.

To quote directly from Renza’s post, because she said it best:

“To be at war with diabetes is to be at war with myself. I can’t divorce myself from my diabetes – it is me and I am it. We are a tag team, a group package, a two-for-one deal. I don’t get a say in that, and no one else does either, no matter how much they implore me to fight.  

It’s not a battle with diabetes that I need. In fact, it’s the complete opposite. It’s finding peace. That’s what I want to work towards – a peaceful existence that doesn’t add more burden.”

Renza Scibilia

I had never thought about it that way before, but as I continued to read Renza’s post, I marveled more and more over how she was able to put into words a feeling that has gnawed at me for many years now about trying to win a never-ending war against diabetes. Why should I be so focused on winning, when it’s more so about learning to live in a peaceful coexistence with a condition that I know is here to stay (until we get that cure in 5 years, wink wink)? Why just accept that I am fighting an unrelenting fight, when in reality it will take much less of my valuable time and energy to seek harmony with diabetes?

Thank you to Renza for such an honest, insightful, and surprisingly optimistic post that challenges conventional thinking about the “fight” against diabetes.

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Book Review: “Still the World’s Worst Diabetes Mom” by Stacey Simms

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Three years ago, I had the pleasure of reading Stacey Simms’ first book, “The World’s Worst Diabetes Mom”. You can read my review of it here, and read on for my thoughts on her second book, entitled “Still the World’s Worst Diabetes Mom”.

Comfort comes in many forms. Sometimes it means curling up with a blanket, hot beverage, and a good book. That’s just what I did when I read Stacey Simms’ newest book, “Still the World’s Worst Diabetes Mom”. And in reading it, I discovered another form of comfort through her words and experiences as a mom of a person living with type 1 diabetes.

Obviously, I’m not the mother of a child with diabetes, but that doesn’t mean I didn’t find plenty of common ground with Stacey as she shared nuggets of wisdom learned over the years of raising a son with T1D. As she shares strategies and lessons learned in her writing, Stacey’s book feels like the reassuring hand of a friend placed comfortingly – not condescendingly – on your shoulder. She talks to readers, not at them, about everything from diabetes organizational tips to the nuances of raising a teenager learning how to drive with diabetes. In doing so, Stacey gives us honest examples of things that have gone right as well as wrong in her family’s journey with diabetes.

As I read the book, I couldn’t help but appreciate just how many similarities as there were differences in how Stacey and her son, Benny, manage and talk about diabetes. Benny’s about a decade younger than me, so naturally, growing up with diabetes looked a lot different for him than it did for me (talk about technology advances). But even so, Benny and I both started using Dexcom right around the same time – back in 2014 – and Stacey’s anecdotes about pain points of the old G4 system were very familiar to me.

Stacey’s new book, “Still the World’s Worst Diabetes Mom”, is filled with stories that highlight her diabetes philosophy: “not perfect, but safe and happy”.

Another perspective that I know all too well and share with Benny? The fact that I, too, have a sibling who is 3 years older than me (a brother, whereas Benny has a sister) and who does not have diabetes. The chapter of the book that talked about this dynamic resonated particularly strongly with me as Stacey shared a conversation that she had with her daughter Lea about what it was like to grow up with a T1D sibling. Lea shared some insights about how it could be difficult, at times, to be the big sibling who had a little sibling that required extra care and attention from her parents. This section of the book made me wonder how much my older brother might be able to identify with what Lea said about being aware and understanding of Benny’s needs, but also a touch resentful from time to time. It’s a talk that I’d like to have with him one day so I can better understand his experience, and I credit Stacey and Lea for being brave enough to share their discussion so candidly and inspiring me to think about what growing up with diabetes was like for my own sibling.

Equally powerful for me was the chapter on sharing photos of diabetes on social media. This section of the book encouraged people to think twice before posting a photo of a child with diabetes in distress or in the hospital. Stacey was able to navigate the tricky topic in a non-judgmental, though-provoking way that I think will help people be a little more careful and deliberate about what they choose to post about diabetes online.

And my two cents on the matter? I’m about to sound like a dinosaur here, but I’m a child of the 90s, meaning that social media wasn’t a thing – so my parents were definitely not posting about me, much less my diabetes, on the Internet. In fact, whenever I browse through their photo albums (they have a solid dozen plus documenting me and my brother’s youths), I’m hard-pressed to find a single image that indicates that I even have diabetes. There’s one that comes to mind where my blood sugar meter is in the foreground, but the focus was always on me and my experiences as a little kid, period, and not as a little kid with diabetes. And I love that, because for me, it helps me remember a childhood that was very much so not tainted in any way, shape, or form by my diabetes diagnosis – let alone a traumatic, diabetes-related incident that I would’ve preferred my parents kept private rather than posting about it online. After all, my diabetes story is mine to tell, and clearly I’m comfortable doing so now as an adult!

Overall, this book is authentic, empowering, and inspiring – a worthwhile read for people living with diabetes and their caregivers. It’s a reminder that support from loved ones is key in helping people with diabetes learn how to fly, making it that much more special when it’s time to watch them soar – like Benny.

You can pre-order the book here, or purchase it here beginning November 1st. And be sure to check out Stacey’s podcast “Diabetes Connections”, which is available on the Apple, Spotify, and anywhere else you listen to your podcasts.

Disclosure: Stacey personally invited me to review her book. She’s one of the many terrific people I’ve met through my own personal diabetes connections (pun intended). I was not financially compensated to provide this review. It is an unbiased and honest review of a wonderful book written by a wonderful person and I’m happy to help spread the word about its upcoming release!

Change is on the Horizon

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In the last year and a half, change and I have grown to be more than just acquaintances: We’re very good friends now.

The big changes that I’ve experienced in that span of time (to name just a few) include buying my first home, getting my puppy, Violet, and naturally, coping with the numerous ripples of change that were brought about by the pandemic. As someone who has always found comfort in the “known”, these changes made me anxious and scared because of all of the uncertainties associated with them…but they also taught me that I’m capable of adapting to them.

So I figured, why not add one more change into the mix?

Another big change is headed my way.

Today is my last day with my employer of the last six and a half years. On Monday, I start a brand-new job at an organization that means a lot to me, one that I’ve happened to write about here many times before…

…and that is the College Diabetes Network!

I’m pleased to share that I’ll be joining the talented CDN team as their new Community Engagement Manager.

This job represents so much to me. It’s a career shift, for sure, but it’s a shift into a field that obviously is very near and dear to my heart. I’m excited to see how my personal passion, advocacy skills, and creative energy will translate to this professional role. And I’m even more thrilled to know that I will be working with an absolutely amazing group of individuals, both internally within CDN and externally with a community that I care so much about.

While I will miss my colleagues from my now-former employer very much, I do feel that taking this opportunity with CDN is the best possible decision I could’ve made. It feels like a dream come true. I’m honored that I was selected for this role and I am determined to achieve a lot with it.

For the first time in a long time, I’m looking forward to going to work on Monday and starting this new chapter…and I really can’t wait to see (and share) what the CDN team and I will accomplish in the future!

The Comparison Culture and How I Tune It Out

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We all know that social media can be…damaging.

Scroll through Facebook, Instagram, or any other social network and 99% of what you see is the idea of “perfection”: Beautifully dressed and made-up individuals showcasing their gorgeous homes or families or possessions. Usually, some sort of caption will accompany the post and it might say something like “so blessed to do life with my dream partner” or “we just bought our first home, can’t wait to fill it with joyous memories” or some other gushing, effusive language that is followed by a series of exclamation points and emojis.

There’s nothing wrong with this…except for the fact that, obviously, people’s lives aren’t as “perfect” as they seem.

Life is messy, but we don’t get to see that side for many people on social media.

This is true not just about life events, but something as specific as life with diabetes.

I think that our community has gotten a lot better about it, but I used to see so many posts that showed “perfect” blood sugar graphs and “perfect” A1c readings.

And I used to obsess over these posts.

I’d wonder why I wasn’t achieving the same levels of success as these other individuals. I’d convince myself there was something wrong with me, and that I’d never have blood sugar graphs or A1c levels that were “good enough” to share online.

Between diabetes perfectionism and real-life perfectionism (Why aren’t I married yet? When will it be my turn to start a family? What’s wrong with me that I haven’t met all the other adult goals that so many of my friends have met?), I was starting to drive myself insane.

Social media was breeding a culture of comparison for me.

I couldn’t log onto an account without immediately comparing myself to the images I saw and the stories they told.

It’s taken time, and I’m not always good about it, but I’m learning to tune out the noise on social media and how to stop comparing myself so much to others.

So how did I start to unsubscribe to that culture of comparison?

For starters, I came to terms with the fact that I didn’t want to leave social media altogether. I like how it keeps me connected with family and friends on top of connecting me with individuals all around the world. I like how it functions as a support system when I need to consult my diabetes online community for wisdom and guidance.

But I knew that I needed to take a step back. So I started slowly and gradually: I removed the Twitter and Facebook apps from my phone, telling myself that if I really wanted to check the feeds for either, I could do so using my Internet browser. I also spent less and less time scrolling, a habit that was addicting to me because I wanted to see as much content as possible, but also one that I recognized as damaging because more content meant more comparisons to others.

The most important thing that I did, though (and continue to try to do) is repeat a few mantras to myself:

This is just one page of this person’s story.

You don’t know the whole picture.

You don’t want to be anyone other than yourself because you truly do love the people and things in your own life.

It might sound silly, but reminding myself that social media is designed to show off the “best” parts of our lives really did help me come to terms with the fact that I needed to stop comparing myself to everyone. Just like I have plenty of bad things that happen in my life, I have a hell of a lot more good, and just because I don’t choose to showcase everything on my feed doesn’t mitigate the good.

And one last thing that I’m trying to do? I’m simply trying to be happy for others who revel in their successes and choose to share them online. I’m also trying to pay closer attention to those who are brave enough to showcase their failures online, diabetes-related or not. In fact, it’s not uncommon for me to open up my Instagram app, scroll through my feed, and see the most “perfect”, straight-lined Dexcom graph followed by an “imperfect” topsy-turvy Dexcom graph. I’m training myself to react to the former graph not by comparing myself, but by feeling good for the person who posted it. And in terms of the latter graph, I also don’t want to compare myself to it (I’m not proud of it, but I’ve taken a look at “bad” graphs before and said OMG, my numbers are sooo much better), but instead offer words of encouragement or commiseration – because we’ve all been there.

The comparison culture is toxic. It’s taken time for me to realize just how much it was affecting me, but now that I have, I’m glad because removing myself from it will help enrich the relationships I have online and in real life. When it comes to diabetes specifically, it’s difficult enough managing my own, and that much harder when I compare how I take care of it to how other people with diabetes live their lives. Learning to appreciate our diabetes differences instead of stressing over them makes it so much easier to support and uplift one another when we need it most.

This Time Last Year…

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This time last year, I was under the impression that I’d be heading to the Friends for Life Orlando conference that is held each July.

It was supposed to be my “triumphant return” to in-real-life diabetes meet-ups. There were so many individuals I’d hoped to either reunite with or meet for the first time.

Obviously, the pandemic totally changed my plans – as well as everyone else’s.

I was upset for awhile, but took consolation in the fact that the FFL team worked hard to turn it into a virtual conference. IMHO, I think they did an excellent job, and I remember signing off from that one feeling hopeful to attend it in-person in 2021…

This time last year was supposed to go a little differently.

…except I just don’t think that’s going to happen for me this year.

As far as I’m aware, the CWD FFL Orlando conference is on and in-person for 2021. But I, personally, am not comfortable attending. I know this won’t be the case for everyone and that’s okay. Yet I still feel compelled to explain why I’m not going to attend and how this makes me feel.

I don’t feel good about traveling, well, anywhere these days. I have a lot of anxiety about it, so much that any type of getaway, as nice as it sounds right now, just wouldn’t be worth it in the end because of how much worry I’d have about the trip.

And of course I’m sad about this. Of course I want to escape somewhere, and OF COURSE I’d love the chance to see my diabetes community in person. I find that in-person interactions are so much richer and fill me with a sense of gratitude and camaraderie that just can’t be matched online. Plus, I feel that it’s much easier to forge genuine connections when interacting with others face-to-face…I struggle to keep up with all the tweets, Instagram posts/stories, and Facebook threads, so instead of trying to weed my way through them all, I typically just don’t engage whatsoever. I simply can’t find enough time to comment as much as I’d like, which means that I miss out on some great opportunities to satisfy my need for conversation with the diabetes community.

As much as my decision not to attend bums me out, I do take some solace in knowing that there are others in the same boat as me. And I also feel reassured thinking about how hopefully, this time next year, I will be planning my true comeback to the wonderful world of diabetes conferences (in the wonderful world of Walt Disney, to boot).

I’m Right, You’re Wrong: Debating with T1D

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This blog post was originally published by Hugging the Cactus on September 12, 2018. I’m reposting it today because it is still incredibly important and relevant: We ALL must work together and treat one another with respect. Life with diabetes is hard enough on its own! Diabetes online community, I love and value you so much…please just remember to be kind to others. Continue reading for my thoughts on why I think it’s fruitless to debate one another regarding diabetes…

I found the diabetes online community (DOC) a few years ago – or perhaps it found me – and to this day, I’m incredibly grateful for it. It’s introduced me to new friends and it’s always been a reliable source of information. Whether I’m lamenting a low blood sugar at 2 A.M. or asking if anyone has advice on a pod problem at 2 P.M., odds are I’ll have someone reaching out to me within minutes in some form or fashion. That kind of on-the-fly support is invaluable.

That being said…the DOC is not always a perfect safe haven.

I'm Right, You're Wrong_ Debating with T1D
It isn’t productive to argue over who is “right” and “wrong” when it comes to diabetes care and management because it’s highly individualized.

In fact, if there was one thing I could change about it, it would be to make it a judgment-free space: because all too often, people are unfairly judged for how they choose to manage their own diabetes.

I’m not saying that people aren’t entitled to opinions. Of course they are! But what happened to respectfully disagreeing with people?

I’ve seen situations like the following across different social media platforms:

  • People getting attacked for following low/medium/high-carb diets
  • People getting criticized for sharing “good” and “bad” blood sugars/A1cs
  • People getting judged for dealing with diabetes burnout – as well as people getting judged for sharing their diabetes triumphs
  • People getting discouraged from posting only the pretty parts of diabetes

We can’t keep doing this to each other. Just because a certain diet or T1D management strategy works out well for one person, doesn’t mean that it will work the same for another. That’s because diabetes is not a one-size-fits-all condition.

And we shouldn’t be judging one another for our differences. In fact, our differences can teach us so much more than our similarities can. We should celebrate one another for living with diabetes: doing the best we can, day after day, whether it yields “ideal” or “not ideal” results. Because it’s damn difficult to manage, and anyone who says otherwise is being judgmental.

We can learn and grow from one another, which is pretty powerful, as long as we refrain from this “I’m right, you’re wrong” attitude.

T1International Releases Important Statement on #insulin4all

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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

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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

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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. 

dcfe851d4b73a1ade687020fece39328
“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

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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