PAID ONLINE RESEARCH STUDY

Yes, you heard me correctly.  This is an opportunity to give back to the diabetes community through participating in research,  while also receiving compensation to do so if selected.

I am working with Matchstick LLC (my disclosure) to help spread the word and find participants for their study detailed in Matchstick’s words quoted below:

“[Matchstick’s] goal is to understand what patients and caregivers want and need to create solutions that eliminate barriers to treatment and ensure clients are developing the right devices. To us, the people who use these devices always come first.

Matchstick is running an online research study that can be completed on your computer or through an app. The study goal is to understand the current practices of insulin pump users. If you have diabetes, are insulin dependent, and use either Sure – T or Silhouette with a pump you may qualify for this research study.

This online study is currently open and closes end-of-day Thursday, July 5th.[*] The study is set to be completed over the course of 2 separate days of your choosing during the open period. It should take approximately 45 minutes to complete the activities for each day, for 90 minutes of participation in total.

If you qualify and complete the study you will receive compensation for your time.”

*Date updated.

Also noteworthy:

  • You must be US-based to participate.
  • Encrypted platforms are used, and participant information will be de-identified.
  • The research is being conducted for a device company client of Matchstick LLC.  The research will not be published.

If interested in participating and/or sharing the link, the insulin infusion study screener can be found here.

Or, you can manually copy and paste the link from this address:

https://docs.google.com/forms/d/e/1FAIpQLSez5jzqrl6N-UXb0TuB9wex7JJnwrcLvwvy_pVlx-S6l4Y2ag/viewform

I encourage you to please share this link within your networks, particularly Twitter and insulin pump-related Facebook groups.  Thanks so much for your participation and assistance!

-Ally

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The Balancing Act

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This blog post appears as part of Diabetes Daily’s Diabetes Social Media Burnout Day.

Much like diabetes is a balancing act between the highs, the lows, and everything in-between, so, too, is social media advocacy.

I find myself pulled between extremes: excited when having a great day, frustrated when things go awry. How much should one vocalize these feelings? It is no secret that I wear my emotions on my sleeve, especially on Twitter. But I always hope to lift others up by being transparent with my diabetes experience, rather than to tear down anyone’s mood by being too-transparent in a Negative Nancy moment. Again, life is a balancing act.

On the one hand, I am so proud and thankful to be a part of the diabetic online community (#doc). I want to scream it from the rafters so that my non-#doc world knows how great it is. But on the other hand, I love my #doc cocoon just the way it is: bursting at the seams with people who “get it,” devoid of judgment from those who do not “get it.”

The #doc may have differing opinions on various topics (Should we inhale insulin, or inject it, or pump it, or pray harder for a cure?!!!), but at the end of the day, we all understand without needing to say much. We know how tiring it can be when the CGM line continues to drop down no matter how many juice boxes are guzzled. The non-#doc sphere requires some introductory, explanatory information in these, and similar, circumstances.

For example, there is a large difference in screaming, “I’m high!” to my diabetic relative, versus yelling the same phrase at a baseball game and receiving some weird looks in response. I can Instagram a picture of an empty Juicy Juice box on my nightstand, and the #doc immediately understands. Whereas I may need to explain to my non-diabetic friends why overnight hypoglycemic episodes can be dangerous. Most of the time, I enjoy educating others about diabetes. But especially during times of burnout, I simply want to get on with my day and push diabetes aside.

There is a weird juxtaposition of advocating outside of #doc territory.  I often want society to respect diabetes for the jerk that it is, so I may post a picture of a CGM graph showing 55 mg/dL with a slanted down arrow.  As in, “Wow, I survived that sh*t!  Heck, yes!”  The media does not always portray just how strong we are.  We deal with life-threatening lows and highs, and we start over the next day.  Some of us have not been so lucky, and we mourn their losses and raise awareness for their stories.

Yet these measures of advocacy often draw out the questions that make my skin crawl.  “Is your diabetes still bad?”  You’re missing the point.  Diabetes is an enormous Swear Word, a complex beast that we do our best to tame.  If I’m talking about diabetes often (I am), it is because I want you to hear my story and to respect it.  The non-#doc Wilford Brimley anecdotes provided in response often add to the feelings of burnout.  Social media is overwhelming sometimes, and I can be my own worst enemy when in a cranky high blood sugar-induced mood.

Diabetes isn’t Burger King, and we can’t always have it our way. I cannot simultaneously expect the non-#doc world to understand more about my personal life with diabetes if I do not let them peek inside my #doc cocoon sometimes. They know Ally already, but do they know that I take my coffee very light, no sugar? Some do, and some do not. In order for me to be a better advocate, I do not have to tell every detail to everyone. But I may choose to explain that I am grumpy due to high blood sugar or why I believe so wholeheartedly in finding a cure for diabetes. Achieving that balance of what to share and when to back away from over-sharing can be a difficult tightrope to walk in the heat of one’s emotions.

Generally, I find the #doc to be a very supportive environment, willing to listen to each person’s shared, yet unique, experience with diabetes. If I ever feel stressed out about blogging, then it is simply not the right time to be blogging. It is a purposeful hobby which I enjoy greatly, and I never want it to feel forced.

As for “diabullies,” or internet trolls, or cinnamon-cure-enthusiasts, I have been tangled up in a few instances where no matter what I said, the hole seemed to get dug deeper with them. My intentions here will always be good, and I believe that we should all be able to respectfully agree to disagree if we choose to do so. If a person hiding behind a keyboard is especially cruel, I try to remember that said person is hurting. Bullies target others to distract from their own pain. It does not make it right, but we are all human and we all make mistakes. We should hope that internet bullies one day find the type of love and support that we have within the #doc.

So there you have it: the diabetes blogosphere balancing act. Am I high? Am I low? Am I happy? Am I sad? Should I advocate harder? Should I let others into the #doc cocoon? Is that a friend? Is that a bully? Do we all experience our own versions of diabetes, whether as T1D, T2D, LADA, MODY, CFRD, caregiver, friend, family member? Aren’t we all in this together? And aren’t we all in it for the right reasons?

I believe that we are indeed here for the right reasons, and we share our stories as they unfold.  If you need to take a #doc break because you are genuinely burnt out, then by all means, go on hiatus in the spirit of maintaining authenticity. That, in and of itself, can be a valuable aspect of your own diabetes story.