Alicia: UnLeashed! July 2018 monthly article

The internet is an incredible resource of information and support. For people with diabetes it is often our way of building community with others sharing similar struggles. The internet can be a great source for information, particularly for those who do not have extensive local medical resources. It can even be a great place to relax and blow off some steam that accumulates living this life. But for all the good that the internet can do, it can also cause a great deal of harm. Knowing where to tread and what to avoid is an important skill for maintaining balance.

So here is a basic guide to sanity and civility for we people with diabetes. I’d like to share my experience with interacting with the diabetes world online without feeding the trolls. (trolls being the negative voices that like to comment, tear down, and misinform also known as “flaming”)

DON’T: Post your specifics. 

DO: Share your wins and struggles.

There is no other time in our lives when we invite the entire anonymous world into our lives like we do on social media! We would never stand in the middle of a crowded train station and shout our medical state and ask for others to comment. But we go into a social media page and do just that. This gets intensely overwhelming when everyone’s opinion floods your world!! This is never more evident than posting your A1C on a public forum! If someone post an A1C of a 6.4, one side of the room will shout at them that they are going to die young if they don’t get it into the 5s, another side of the room will scream that this is unnecessary and that anything below a 7.5 is fine, still others will insist that a 6.4 is a construct of the pharma-medical complex designed to hold us down!! Meanwhile, three meek and mild souls will private message  with words of support and encouragement.  The anonymous world of the internet is a place where negativity and judgment thrive! Posting: your numbers, your diagnosis, and other information that you would typically keep private, invites the judgment and negativity of the masses. While some of us are equipped to sift through the dregs of venom to pull the pearls of support, why feed the fire of online trolls?

What I recommend and practice is to post victories and struggles, but maintain the same level of privacy online that I would at work. I might share “Finally hit a long time A1C goal” or, “really disappointed that my labs came in higher than expected”  That way I can discuss coping skills, or general management strategies with others without feeding the trolls. Sharing victories without assigning numbers to them allows us to share in the victory without unintentionally putting others down as well. After all, someone who gets their A1C down from a 12 to a 10 has just as much rite to celebration as someone who gets theirs from a 7 to a 6 (And quite possibly more so!). Save sharing specifics with those with whom one has built a relationship. These people are invested in our growth and wellness, rather than just getting an anonymous reaction. This also goes for seeking affirmation from averages. Many patients ask me if their blood sugars are average, if their insulin usage is average, or where they fall in relation to the “norm”. Trying to find this information online is nearly impossible and what one does find is so biased as to be meaningless. This is because diabetes is as individual as the people who have it, and what is average for one person could kill another! What works for you is the most important data set you can use for comparison. Mark Twain is credited with having said “Comparison is the death of joy” and I have found this to be very true.

DON’T: Self diagnose via Google

DO: Use reliable resources to educate yourself on a diagnosis and potential treatment options.

As not only a CDE, but an RN, I get a LOT of calls from friends and family members asking if I think they are sick. Inevitably this conversation ends with convincing someone to see their doctor to get a proper assessment and diagnosis. The progress of seeking knowledge tends to go something like this: someone notices symptoms; they try to convince themselves it is nothing; symptoms get worse or more frequent; in fear they Google their symptoms; Google leads them to a website or forum where people who have never even had a conversation with them suggest that they are either entirely fine or likely to die a horrible death immediately; they call their friend the RN to get a second opinion from someone with whom they have had conversations (but who does not know their full medical history and has no intention of doing a full physical assessment and destroying the personal space of friendship.)

The only person who should be diagnosing medical problems and guiding you to treatment is an educated, trained, caring individual with the permission, resources and ability to complete a full assessment along with the knowledge of as complete a medical history as possible.  Any reputable online resource is going to be required, by our litigious society, to list the absolute worst possible diagnosis for any given symptoms. All Web MD searches lead to cancer or possible death! And if you do a search that does not include that your symptoms could be a sign of a complex medical problem that should receive immediate medical attention, you probably have hit on an un-credible source.

But there is a great deal of really good information online that can help us be more educated patients and help our providers find the best fit of diagnosis and treatment for us. When we are more educated about our options we can also be powerful advocates for our needs. There is even the opportunity to educate our providers to therapy options they may not have been aware of.  SO how do we find good resources in the sea of misinformation that is the internet?

First, check the extension. The Extension is the word for the last three letters on a web address, for example .com, .gov, .org, .edu. A website that carried a .gov extension means that it is an entity of a federal or state government. These are considered sound resources for medical information such as the Center for Disease Control, National Institute of Health, or local Health Department. Because the government is very conservative with the information they give, this information is not likely to be particularly cutting edge or specific, but it is all derived from studies, testing, and proven sources. (How much faith one puts in governmental bodies is not the topic of this article so please no trolling)  The second extension to look for is .org. This is typically used by organizations, community resources, and other non profit entities. Though this is not a restricted domain name, entities under this extension are less likely to be engaged in direct commerce. While these sites may have an agenda, they are less likely to be directly making money from selling a product, which can give them a little bump in credibility. This is the extension used by entities such as the American Diabetes Association, the American association of diabetes educators, the JDRF and other diabetes support and advocacy entities. Which brings us to a third way to check credibility. Credible resources will typically be recognized, or accredited by one of these agencies. Another good check is whether the site links to these more credible entities. Stick with more reliable sites for the most trustworthy information, the farther you stray into the murky waters of the internet the more you should be looking for evidence of credibility and questioning things. When looking at magazines, journals, online publications and the like, check the “About” section and look for the phrase “peer reviewed” this means that this publication submits itself to its peers in the field for review of its information. Just because something is published by someone with a PhD at the end of their name does not mean it is valid, but slipping plain old malarkey past a board of professionals of various degrees and perspectives is at least more difficult to achieve.

A final check that I recommend for screening all information online is a personal bias check. If it is really easy for you to agree with something, question that. IF something fits really well with your opinion, what you hope to be true, or what you thought before you started searching, that is a red flag to question its credibility. The internet is full of people who make a LOT of money from getting you to click like share and subscribe. Telling people what we want to hear is a booming business, so if you find something that tells you what you like to hear, look for things that tell you, you are wrong, and compare the credibility of both. Or better yet, take both possibilities to your healthcare team and discuss the possibilities openly.

DON’T: Jeopardize your safety or security

DO: Build a network of support.

Barely a day goes by without a new report of an online scam, data breach, or victimization of vulnerable persons. Protecting yourself, your family, and your security extends to life with diabetes too. 

A couple important tips here are:

1. Your pharmacy, insurance company, doctors office etc will NOT call you to ask for credit card information for payment. Any professional organization will mail this type of request. Don’t give out financial information, or identity information to anyone who calls YOU.  If you call THEM they will ask for information to verify who you are and to complete any business you have requested, but these types of entities will not call asking you to give details over the phone.
2. Read your Explanations of benefits letters. Whenever you have a claim paid by your insurance company they are required to send you an explanation of benefits letter that details what was charged, by whom, when and for what services, as well as how the insurance company then paid that claim. READ THESE!!!! insurance fraud is a billion dollar industry and it is easy for someone to set up a “doctors office” or “pharmacy” and charge your insurance for services without you ever knowing it. First this adds to the cost of insuring you and could even leads to problems getting services you do need covered later. Second, the person doing the scamming has your information and can also be using that to commit identity theft! Read these EoB letters and question anything that does not seem accurate.

But, as  scary as it can be, the internet can also be an amazing source of support and community. Diabetes can be a very isolating disease at times. People with type1 (in its various forms) make up a very small percentage of the population so chances of meeting someone near you to connect with are quite slim. We are all dealing with a chronic disease that requires near constant management, but we don’t “look sick” if we are doing it well! This leads to a feeling of being alone in the struggle, or lacking an outlet to express our frustrations, fears and joys. Using the internet to help us gain and maintain contact with the diabetes community helps us stave off this emotional strain that often leads to diabetes burn out.  Reaching out to your local JDRF chapters, support groups, camps, meet ups, events, and learning opportunities gives us a chance to network, recharge our batteries, and gain inspiration to continue the battle. I strongly recommend to all my patients and friends with diabetes, as well as those supporting them, to reach out to the diabetes community. Not just online, but in person too. You might not meet your new best friend as a JDRF walk, but there is something about just seeing that many people who are fighting in the same direction you are, that is incredibly empowering.